40 years of chronic pain

By Helencal Sunday, February 10, 2008

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I was diagnosed with trigger points and overall pain as a teenager. I remember getting muscle biopsies and up to 35-40 trigger point injections three times a week by the time I was a sophomore in college. But I also had severe depression and headaches since childhood. I have been so active my whole life from skiing to backpacking to every sport created and associated multiple serious injuries. Plus I also worked two to three jobs at a time as a trauma specialist and family nurse practitioner. But the chronic pain and depression disabled me 12 years ago (now diagnosed with fibromyalgia, major depression, myofascial pain and peripheral neuropathy). I need to be smarter about appropriate exercise (I want to play hard, fast tennis and jog) when I should be doing water exercises, stretching, etc. It seems that every medicine I have been on has been disastrous. I was recently on Lyrica and became disoriented, suicidal and very ill. I hate the side effects of meds and I do get horrible side effects. There doesn't seem to be any rhyme or reason to what triggers my worst symptoms. After getting rid of almost all meds except for gabapentin 300 twice a day, clonazepam 0.5 mg three times a day (for restless leg syndrome) and Oxycontin 30 mg a day (terrible constipation), I even developed severe left-sided TMJ pain right after the Super Bowl...I celebrated with a frozen Ensure smoothie which triggered the jaw pain. I have pain, fatigue, and depression that never stops. I have started going to a pain clinic sponsored by the Army as I am a military dependent. But I feel like such a complete loser. I desperately need some support. However living in paradise here in Hawaii doesn't provide much of a support system. I used to be so active (even with chronic pain) that I feel like a failure being unable to work, concentrate, and do most normal activities. I moved to Hawaii 25 years ago because the pain was so bad in a cold climate...but I just get more debilitated each day. I really need some help as I am so suicidal but I know that it would just devastate my husband. Very few psychiatrists and psychotherapists in this state. But I really don't want to die...I just want the pain and fatigue and depression to go away. Help... anybody???

Comments (58) | Add comment

Kimberly175

2/11/08 1:50pm

Oh reading your post makes me cry! i feel so bad for you and your pain. I know right now you need support NOT someone to feel bad for you, but just know on this site there is so much helpful information on this site, and sooo soo many great people who support you and make you feel welcome. Thats what they have done here for me, this site is like a little family. We all give eachother advice and read others advice and so forth. It helps ALOT. For me, its like you know people are going through pain out there, but it feels real when people acually write about it and such.

How you tried different methods to help with the chronic pain?? nerve stimulaters?? phy. therapy? streches? etc? anything to help it? I hate the way the emds make me feel so i can feel ya on that one. Its not fun feeling all dopped up all the time. Then you really cant get stuff done! Do you think you got worse as the years went by? you said you suffered as a teenager with chronic pain as well, was it worse then? if you read about me, you'll see im young, and in chronic pain as well. Its horrible. I dont even know how i get up and go to work everyday. I feel like quitting my job everyday b/c i feel like its too much for me and i cant deal with it. Just try and hang in there, you cant leave us now that you have joined...hehee and your husband needs you too, so you cant go anywhere!! :) LOTS of great support out here waiting for ya....take care and please write back and keep me informed on how your doing.

Helencal

2/11/08 7:25pm

Kimberly, Mahalo (thank you) for your comments. The best thing hat was ever said to me was that fibromyalgia is a terrible disease, but you just have to get on with your life! You will have good days and better days...but some will be gloomy and dark like the weather. I found that by being a nurse practitioner and ICU nurse that I took care of patients who were much worse off than I. They needed me and my caring for them helped me through the pain. I look back and wonder how I did so well as a golf amateur, but it was just that I looked forward to life and learning and teaching every day of my life. Find something that you are really excited about and do it. When i started law school back a few years ago, there were two quadriplegics in my class. God, they never had pain anymore, butlook at their daily struggle.

I feel better and not so despondent after you wrote me. Thank you.

Helen

usetobe

2/12/08 12:14pm

Helencal.. I understand your plight. Not wanting to die, just wanting the pain to go away. Anyone not experiencing constant unrelenting pain probably does not understand. I cannot imagine 40 years of it, my own 11 years of pain has taken me to 'that place' (wanting to escape). I understand the cycle. Balancing pain and how much you can endure before that veil of depression washes over you. Being beaten down, exhausted from the battle, fighting to regain your fragile grip on strength and will to continue the war. Attempting to figure out how you got to that place again. Where the pain has reached the point that your body and mind are just too tired to go on. How did I get out of it last time. How long did it take and can't I just sleep until this passes. Where did your life go and why can't you have it back.

I admire your strength and endurance. We that are living with chronic pain, gather our will to continue from you. You are one of the Generals in the battle. You have fought on, through the depths of depression to the height of survival. When you share your desparation, you are not complaining or looking for pity. You are communicating your feelings and sharing your experiences. You allow all of us into your inner struggle.

I thank you for sharing. I have faith in your ability to 'get through' this. I admire your honesty and wish you well. I too have been writhing in the depths of despair, that is how I found this site. If I can help you to get through this, please contact me. Like I said, I am new to this site and not very computer savvy, so I am just learning how to navigate.

I hope to hear from you.

Helencal

2/12/08 4:57pm

usetobe, change your name to "I will be"...you have a lot of life and love in you. Mahalo (thank you) for being so understanding and supportive! I am no general, but one just has to get through each day. The drugs made me more suicidal and so I have reduced them to the minimum. Life is so much better wth a clear mind.

Have you found a pain clinic or ongoing team approach for your pain? It's extraordinary to work with caring, knowledgeable MDs, nurses, behavioral psychotherapists, and anesthesia.

Your support is outstanding...you are one of the good people. It's not a good day for me as my husband brought home a virus from one of his students and we are both suffering from muscle pain, listlessness, and cold symptoms. But it will pass.

If you watch the TV show "House", Dr. House made the comment once that "we are all miserable"....I had to laugh out loud. He's right...but please keep living; you helped me so much!

Aloha good friend,

Helen

usetobe

2/12/08 9:21pm

Helen

We heard about the show House this past fall and ordered the series from Netflix, we're hooked. You are so right, he cuts to the chase with his comments and if you are a chronic pain person, you really get him. Well, at least his comments.

I'm glad to hear you are doing somewhat better and sorry you and your husband have the muscle aches today. It never ends!! Sounds as if you have a great husband as well. I would never have made it this far with out mine, he is my once in a lifetime love and takes care of me so well.

I do have a pain mgmt team. Not too good but better than none. We moved to NC 2 1/2 years ago and I had to leave behind a really good group in PA. This Dr changed my meds when we got here and I have had lots of ups and downs since then. In fact I just found this site a week ago when I was also nearly suicidal. It is SO BAD when its bad! I was really lucky for about 5 years and able to have more good than bad days. I so related to your talking about being really active, that is how I was. Even after I got sick, I had good times, not so much now.

I'm so glad you replied. It is very difficult to connect with others when you are chronic. Especially when you are a strong one that hates to give in but sometimes have to. I saw a lot of pain in your post and felt that it took a great deal for you to be so honest. I think we may have alot in common, you sound like you may be as stubborn as I am. Like I said previously, you are to be commended for your endurance and strength. Again, I salute you!

Please keep in touch, you give me hope and I would like to give some support to you if I can.

Di (Usedtobe)

Betty Boop Too

2/14/08 5:33pm

Hello Helen & Welcome to the Chronic Pain Connection.

Boy I sure cannot imagine having to deal with pain as early in life as you have.

I've really found a great deal of support here and hope you do too. I hope you received the invitation to my pain page. I responded to your message yesterday. Big Grin Your welcome to email or contact me any time you'd like. My email is on my homepage.

My husband just took me on a trip to Kona in September, it was a vacation/research into finding a climate that might help my pain.

It turned out to be a wonderful trip, I was nervous, as I'd not traveled since my pain had become chronic, but the climate really helped me and I was in the lowest pain I'd felt in 5 or six years. It was amazing, but when we flew back into Portland, the cold damp rain hit me and I was in dredful pain for the past several months. I can see why you moved.

Take Care, we're here if you need us.

Betty

Helencal

2/14/08 7:23pm

Hawaii has superb weather. I'll never miss snow and cold again. It's an expensive state, but we are very careful about any money out. Lotsa free activities, concerts, ocean activities...just sitting outside and reading is a pleasure...

Betty Boop Too

2/15/08 1:10am

I'm right there with ya Helen.

I spent all my time at the Condo, out on the lanai, reading, & just ejoying the nice temps. It was the best ever.

snorkeling was great, I could swim along and really feel very little pain, just amazing. I miss it so bad right now. Your a lucky lady

Take Care, hope to see you around

Betty

jerry hesch

2/15/08 1:22pm

Helencal,

I am happy to speak w you.

My singular attempt was in 2001 and a perfect stranger offered help, "Do you need a ride somewhere..." I was stunned. I was crossing the street to the park...

Now, 4 major surgeries later (10 total), after doggedly pursuing, pushing, asking for atypucal medical tests such as a very very helpful cervical discoram (Yes, I am that smaller than 20% in which it gave NEW and VERY HELPFUL INFORMATION), me developing a palpatory test for 3 nerves/traumatic neuropathies in the inguinal canal (if you do literature search-you will find nothing!) brought me to last surgery last July and al fin, a reasonable quality of life with manageable pain syndrome, versus 13 years of brutal out of control, suicidal, etc.

Honestly, I believe that you are underdiagnosed.

For example: multiple triger points is NOT an explanatory diagnosis. I say, dig deeper....why do you have multiple triger points....etc. Treating the triger points can be unsatisfactory if etiology is not yet clear, not yet addressed.

Re a chat, if interested, I prefer a 3-person chat, with a best friend, or advocate, your husband, etc. Ideally, a colleague (Nurse Practitioner or MD friend). Prior to that we can have a general chat anytime, but if I were to discuss your medical condition beyond generalities, I like having a second person on your end. It is an ethical obligation.

Sincerely,

Jerry H

Robyn Goldblatt

2/15/08 3:37pm

Hi Helen. I read your post & can really empathize right now. A good day has gone rapidly to ****. I learned a long time ago, suicide is not an option. It hurts the ones you love, even tho it's never the intention, and leaves them questioning themselves. And there is nothing anyone can do, we just want the pain to go away. Among my meds, I am on Lyrica & a phentynol patch. Most of the time it works pretty good and there's no break thru pain so I don't need the heavy duty meds, but all of a sudden, a few hrs ago, I got very sleepy (& the rest of the dwarfs will be played by...... Grin ), muscles sta rted twitching...so I was sleeping till UPS r ang my doorbell (btw, have you hea rd? UPS & FedEx are going to merge; it will be called FedUp Innocent ). I got lucky in the respect that I have a great team of docs at MD
Anderson Orlando, and I guess that was the reason I ended up staying here in Kissimmee 18 yrs ago. I was actually on my way further sw for a rather expensive paramedic school, when I found out I could do it here for a lot less.

I believe that most of us find this page at just the right time. I know I was feeling pretty much the same way you were when you wrote this post. But asI read the replies, I could see that you were starting to feel better. Ppl like us,who are so used to being caregivers, find it hard to reach out. I'm glad you did.

Coming up on 3 yrs ago, I took a 2 week cruise to Hawaii. It was something I had always wanted to do ( & I feel in love w/cruises a few yrs before that), and I decided to live that dream. 1 of the excursions I went on, took me to Pu'Ohanua O Honaunua National Park. That has to be the most peaceful place on earth! I didn't want to leave. I was thinking about getting a job there and just picking up & moving there.
I too got hooked on House and have ordered the whole series thru Netflix. I try to stay awake to watch him, but that usually doesn't happen. Thank goodness for Netflix.

Laughter has helped me thru some very tough times. If you want to ctc me offlist, pls feel free to do so. I love my computer, if only it would learn to cook & clean I wouldn't need a husband Roll Eyes Ok, so that's pushing it. But I have mt cat and wonderful neighbors, so I have been blessed in that regard. Hang in there Helen, because you are NOT alone.

Lotacats

2/15/08 4:07pm

I hear you. I, too, was active as all get out. I had a back yard full of horses (some adopted wild horses) and I did the skiing and was an RNC and substance abuse councelor. If it was physical I did it.

I have not had the problems you had so long. Mine started in 1990 and I waited...as nurses do...for three years to see a doctor and it took 7 years for them to break down and use a real pain drug. Gads. The simple T#3 could have actually been diagnostic but I had to deal with narcophobic clinic doctors.

I couldn't work anymore...the first real symptom that decked me was the strangest pain that ended up under my shoulder blade. All diagnostic attempts failed. Just "suck it up". Someone finally used the T3's and the pain blocked out. Poof...just like that. Seems some neuro pathways are closed with the use of opiates.

Since all of that I've been diagnosed with firbomyalgia and myofacial pain syndrome. The shoulder blade "Beast" as it is named, seems to come from that. (I've had the "beast" for 18 years now)

I have severe Osteoarthritis that has eaten it's way thru a lot of joints and now L3 and L4 and the left leg is numb, overly sensitive, tingles, burns and generally nerve ruined from the vertibrea collapsing on them.

The shoulder blade "Beast" caused me to go on complete disability. If they tried the T3's sooner I may have worked another couple years...but since it rendered me unable to commit to anything...I became legally disabled. Since I got that I was able to get my own doctor who understands and knows me personally from work....and he is really good about helping. He believes me...and keeps the meds up so I can thwart the "beast"...the T3's also prevent it from occurring by goofing up it's signal and takes the sharper edges off of the fibro and joint pains.

My thing to get around all this pain is computer stuff and the ever helpful T3's. My bones and muscles hurt so bad I can do little else. I like to do T Shirts online. It keeps my mind busy. My cats. They get a lot of spoiling. As for my activities...my memories and grateful I got to do them at all when I did. Pain free isn't gonna happen. All I ask for is something to give me a little control over it. That sense of control is everything...even if it's not perfect.

I think the thing that hurt me the most was lack of that control when the clinics were too afraid to use opiates. I bow to the opium poppy because of the properties that foil nerve signals and close certain gateways. Other then that...I have to live with it. Being on disability sucks....but...glad it's there. My son helps me and we work the finances together. Another of my blessings.

I learned to build and repair computers 'cause I can't afford the geek squad...disability isn't that great. I built my soldier sons gamer while he was in Iraq....and my own desktop. At least the electronics is not too hard to work with.

I miss my activities and keep the memories of speeding down the slopes but enjoy my POWER over geek squade. I cannot, will not be without a computer!!! My T Shirts help pay for the internet. I love the Paint Shop Pro pictures I can make...now a friend who is in his early stages of disablity gave me Photoshop. (now to learn how to use it) I like writing web pages n stuff...and doing the T Shirt shop thing really occupies my time....anyhow. That's how I handle it.

Without some pain meds I don't think I can. I depend on being able to sit up and the lower back is a disaster area. The Osteo also ate my lumbar facet joints. Kinda messy back there.

I think if you can make some sort of passion out of something it helps the pain or at least give you something to think on a lot that has nothing to do with pain. Woot!

missy

2/15/08 10:01pm

im so sorry to hear about your pain , i my self am costintly in lots of pain , im so depressed and worryed how im going to be when i get older. my body aches everyday with costant pain. im taking lots of meds , but now lately ive been getting bad stomach pain. and if i dont take my meds i can hardly functon through the day . no one understads me , my family my freinds. if they only knew the pain i suffer each day with but its hard to explain. i have fibro, myfacial, im epaleptic, chrohns, acid reflex. also vulvadynia. for 34 im in ruff shape , you keep strong and best of luck.

Lisa

2/16/08 12:33am

Oh my dear girl,

I am asking you to pleae dont' do anything to take your life away. I have been there. Set a new goal for yourself, not what drs or meds will do to make it better, but what you can do challenge yourself to find new things that you can still do in your chair or couch.

I sometimes do abstact painting, I put my pain down on canvas, it may not be pretty or even art, but i can do it.

Learn all you can go to the library and find every book you can, but not the old ones they dont' know crap!! Be your own medical source. treat yourself to things that you don't normally do and don't tell anyone keep that pleasure for yourself.

I have been in pain since age 8 and am now 45 and have not worked since 96. I can no longer work two jobs.

Have you tried diliudad for pain? Do you go to a pain mangement dr. That is very important. Figure out what you can control that does not make things worse and take charge of your life that way.

antidepressents made me suicidal also. I get lidocaine infusion therapy for my migraines. I had this done in november and haven't had a headache since. I have fibromyalgia, lupus, sclerderma, brain tumor. had bilateral tmj surgery and so much more.

When you are feeling bad my dear tell yourself i am going to sleep on it and see how tomorrow goes. I will email you jokes everyday to keep you smiling. talk to me.

Army mom, lisa

Helencal

2/16/08 2:02am

Aloha and Mahalo(thank you) to everyone who wrote in support. I am getting support from a pain clinic, and new psychiatrist through the military. (Husband is a retired officer) I've gotten down to Oxycontin twice a day with neurontin and as few ultram as posssible.

The trigger points are diagnostic of fibromyalgia along with the exhaustion, depression, etc.

Again thank you all!

Lisa

2/16/08 7:16pm

Dear Helencai,

I am glad to hear back from you! I was worried all night. For me I have found that Hydromorphine at 8mgs three or four times a day works for me and has the list effect for me anyway with constipation. Also with this medication i can take a smaller amount when it is needed without any side effects or withdrawal symptoms.

I can see that you have had great support here from people who care, we will always be here for you. I hope that your tricare medical staff go above and beyond to help you at all times. Please don't let anyone tell you that this is in your head it is not.

Please tell your husband thank you for all of his time spent in the military.

miss lika (lisa)

Helencal

2/17/08 1:32am

Lisa, thank you. I still am having trouble dealing with the constipation...if anyone has an idea..please tell me!

Lisa

2/17/08 3:52pm

Hi Helencal, Yes i do have an answer for this issue, it is called Amitiza. It is a new medication as of 2007. It has no side effects. What this medication does is this, the medication is distributed into the intestinal lining causing the muscles to work. I have gastroperesis which is really slow moving stomach and my intestines are included. I could go 10 days to 2 weeks without a movement. You can imagine the pain. I lived this way for around 20 some odd years. After one month of taking this medication, and i could take up to 4 a day to get my insides moving. I did this for 3 days and went. Then when i could feel myself not moving on the inside I followed up with taking 2 a day for 2 days. I am happy to say for 3 months now i have only had to take this medication 3 times. It is very expensive, but i have a great gastro dr who gave me samples to try, so your dr might have samples also. I don't believe there is a generic out yet. Also Miralax is now sold over the counter.

But stool softners are really not the way to go on a regular basis.

My mom used to drink a beer when she had this problem.lol

keep in touch and let me know. Lika

Helencal

2/18/08 3:15am

Lisa,thanks for the response, however...I read medical research journals all the time and this drug has many side effects. In fact there is no drug that doesn't have a side effect...but I'm so glad that it is working for you. Go to www.drugs.com for updates.

Aloha,

Helencal

Lisa

2/18/08 11:51pm

Helencal,

I apologize about not saying that they are no side effects. Most of the side effects from this medication is nausea, headaches and loose bowels. I should have said out of the 50 some odd people i know who take the medication have not had any side effects. Not everyone feels the or experiences side effects.

There is a weblink for amitiza.com for any one who wants more info on this med. I suggested this medication because you asked and my dr. told me that i have the slowest stomach and intestines in anyone he knows, so i thought if it worked for me you might have some luck.

I was just trying to help not belittle your knowledge. You sound like you like to read here is another website that is great to find info pubmed.com, I think you will like it.

I hope that you find something that will work for you.

have a pain free day,

misslisa

Helencal

2/19/08 2:52pm

Lisa, I'm sorry that I came off as abrupt...This pain and depression can make me irritable. It's just that I came out of a solid 4 months of disastrous side effects from some new drugs and I hesitate to start any medication. For a long time I have felt that the pharmaceutical industry has driven the healthcare industry. Just look at Bayer pharmacies and their drug Trasylol Aprotinin. This drug has killed over a thousand patients a month and Bayer KNEW it had a problem for kidney failure in 2006. The FDA admitted it just looked at the efficacy of the drug and not at any long-term side effects. Bayer stockholders are making millions.

I'm sorry that I have become so cynical, but after 40 years....

Aloha,

Helencal

Lisa

2/19/08 6:08pm

Helencal,

No apology is needed you are not angry at me, you are angry at your illness and you know what so am I. Thank you though just the same for the apology. We all have days when we are bitter. This my sound nuts, but I pray everyday for the person who decides who gets sick and who does not to give me all he has I can handle it and better me than my child or my siblings or any one in my family. This is what get me through I know if i am sick no one else in my family is.

I too know about side effects. I have a heart issue and have to take a pill for it every day for the rest of my life, but this medication also gave me asthma. And yes the pharmaceutical industry does run the gov't. My dad and I has a disagreement about this one. And I believe the public is just know wakening up to this problem of we will give you monies if you pass bills the way we want them to work. When i had medicaid prescription insurance I was able to get my medications now they are not covered.

And side effects are also something that i have to live with, I consider it part of the bargin, and of course there is always another pill to take care of the side effects. lol vicious circle.

And i have learned to ask if there is a medication to take care of side effects before i leave the drs. office and if i have a side effect a script can be called in.

Do you feel like sharing what happened to you?

if you would like to email me directly let me know.

your friend in this world of crap,

lika

Helencal

2/19/08 9:47pm

With Nexium, Zofran, EMSAM (half of an MAOI patch) and Lyrica I became disasociative to the point of psychosis, asthenic (total weakness), anorexic and almost committed suicide. I had the plan in place and said goodbye to my husband and dog. It was if I had no choice in the matter. Thank heavens I had stopped all my meds the day before and my head started to clear before I began the suicide. I felt awful and it took weeks before my symptoms cleared. I stayed on the Oxycontin but have reduced it at my doctor's okay. Then I slowly added my meds one at a time (Prilosec first), then small doses of neurontin and clonazepam (for the restless legs sndrome). I can now use lidoderm patches for my worst pain areas without crashing out and I use tylenol for pain...rarely. And I try to get on with life. It's 4:30 pm here in Hawaii and in an hour I will take my dog, Sammy for a walk in the evening. It's February and it's too hot to go out during the day.

The rest of my siblings are almost completely estranged...one problem living 2500 miles from the mainland.

My parents have been dead for many years...love them as much as you can, sometimes they just feel helpless to do anything about your pain. I miss my dad every day and he wasn't a close, loving person, but he was my dad and he was as honest and pure as the day is long.

Lisa

2/19/08 10:55pm

WOW! I would be skeptical to take any new meds also. I am the same way because I have had allergic reactions before and whenever i take a new med I have contact people to call and check on me.

I would think that you would be out of it too. Have you ever tried Dilaudid? After about 3to4 weeks depending on the person that drugged out affect does not really happen anymore and it is much cheaper, and you can take it more often without the foggyness. I have been taken it for 4 years and have no problem driving, thinking etc. yes it still causes constipation, but nothing compared to oxy or vico.

My sister is estranged to me also and she lives 2 miles from here. I am sorry that you don't have your mom anymore i can relate my died of cancer 5 years ago. and i miss her so very much. My dad is still around and he is a good support for me, but still has high expectations as far as me being able to do things that he thinks i should be able to do.

I have found that my cousins have become very important in my life. I grew up with them, so when we talk and see each other there is something so familar and comforting with them.

Funny story about bad reactions, when they put me on neuronton i had a bad side effect i could not walk forward, lol when i tried to walk i would be taking steps forward, but my legs would be walking backwards. I had just moved to a new town and would walk backwards down the sidewalks (small town pop 49) so i was the talk of the town and made quick friends because we all laughed at me. I came back home to florida because of this and loosing a lb a day and it was the neurontin that was causing it. The stupid dr started me out at a dose of 3000mgs. So do you have your meds that you have to take all straightened out? I know antidepressents can change our personalities, but in the long run (if we find the right combo) life can be easier, not perfect, but easier in knowing what to expect from ourselves. For me it is lexapro and i take valium for my nausea, but this helps with nerves, sleep.

I wanted to tell you the hawiian plants palamas(?spelling) I have around ten of them here. I have white w/yellow, pink,and ummn i forget the other color. I like my plants here I have so many and I find picking the weeds and trimming to be very calming. And my neighbors are nice to me because they want clippings. heehee oh yeah i remember white w/plum edges.

I thought and tried once myself without success and i am grateful, because not all days are bad and i am really not done talking yet. I still have things to say, to someone...

I have a son he is ssgt in sf and I just received a pic of him and bush shaking hands and i think if i had succeded i would have never seen that pic. And I would not have you as a friend!!

Well i had the ac on this am and now i have the heat on.

But how are you feeling today was it a good day for you? any struggles you need us for?

If you don't read this until the am have a great day!!

Lika

Helencal

2/20/08 8:09pm

Well I screwed up the last email. It's getting hot here and I'm not doing so well. I had m first appt with a nice, intelligent military officer psychiatrist. So we will be working on the PTSD that I have and the continuing support for my depression.

This morning I woke up wit the worst migraine in over 6 months. That and the back pain and continued jaw pain. But after ice packs, ultram, and tylenol, I was able to make my 9:30 am appt. My husband drove me and then he shopped for food while I was at my appt. Good guy.

He is a professor so there are times that he can break free.

3000 mg of neurontin...gees! You must have had pitting edema and a lot of water weight gain from the peripheral and abdominal edema. You need to write the FDA and fill out adverse drug reaction forms. You can do it online by yourself. Everyone on this site should be reporting such serious side effects.

I take 10 mg of oxy twice a day, and I maintain an even edge without any side effects. (I recently dropped from 20 mg twice a day). I am given dilaudid IV for acute episodes of pain or if I'm unable to keep anything down. Rare. It is a good drug. My doctor will not prescribe valium to anyone so I take clonazepam 0.5 mg three times a day. And my pulse stays at 110-120 because of the pain and stress. I wonder if that counts as aerobic exercise...just kidding.

Hope you had a good day

Aloha

Robyn Goldblatt

2/21/08 12:30pm

I use Senna-S. I take 1 tablet at nite w/the rest of my nite meds for about a week. That has helped a lot. When it's really bad, I end up having to use suppositories, but I read the box and only use ones that say works within 15 - 30 mins. The activa yougurt also seemed to help, but then I lost my apetite and trying to force myself to eat just didn't work.

Lisa

2/21/08 5:38pm

Hi there,

Sorry to hear about the way you woke up. Migaines are not a fun thing to have. I have a small tumor and i get migraines from this, but last october or november can't rememeber my pain dr. gave me lidocaine infusion therapy and did not have any migraines until this month. It also helped with my needing break through pain drugs, like you with the diliudid iv or im for me. I am having flash backs of me being curled up in the bed on my hands and knees in pain praying for the pain to go away. so I empathize with.

I have ventricular tachycardia and my pulse without my meds started at 122 and stayed that way for months. I know take 25mg of toprol xl once a day for 9 years now and my pulse is very good. But I did have one life long side effect from this medication Asthma. But I would rather have that then have any more episodes of my pulse going nuts to 140 or so and then my blodd pressure goes upto 160/140. Now let me tell you that is by no means any fun for me, or are the hospital stays that go along with it.

The neurotin was not the problem is was the amount that i was given to start with. It is supposed to be one of those meds that you increase over time. But I live in a small town, i mean small not even one stop light and the drs. there were really bad. I knew more than they did. yes I did report them. They also wanted me to take another med that would of killed me. They are the reason well one of them why i came home to florida.

What does your hubby teach? You are very lucky to have such an understanding man. So many of them were raised to be taken care of not the other way around. Maybe the army had something to do with that, the oppressed code. How long has he been in? My kid will be in until 2010 unless he reenlists. I think he will. He will be gone again leaving in a few months and won't be back until late fall. So. when we write each other if i get cranky forgive me, and let me know. I have a tendency to get stressed when he gone. And overwhelmed!

Did you watch cbs news last night? They are doing a report every night this week on the chronic pain in america.

Ok, i am off my back is hurting and i need to move around a bit.

I hope that you are in less pain now and have a good nights sleep.

lika

Lisa

2/21/08 8:49pm

Hi Robyn,

Thank you for this advise. I have real bad intestine issues and stool softners, lax's, suppositories, enemias, all that does not work for me. It is either the amitiza or I have to go to the hospital and have a grafite(spelling?) enema. They put in some kind of medicine that makes everything inside like wet coffee grounds. yuck i know, but it works.

They are thinking about putting in an neuro stimulator for my stomach. It is the same as a spinal cord stimulator it is just for the stomach. I also get botox injections twice a year on the inside of my stomach lining for food to empty out and it keeps the opening of the bottom of my stomach open. I have scleroderma and it is shutting down my insides starting from my lower esphogus down.

I thank god for modern medicine. I wouldn't be here if it wasn't so advanced.

What causes your consti? Meds?

Lisa

Helencal

2/21/08 9:13pm

The basic ingredient is bismuth (as in pepto-bismol), but that seems strange as pepto-bismol is used to stop traveler's diarrhea or soothe the stomach as in stomach upset. I'll have to read more into it.

They have started advertising Amitiza. It shows a slim active woman who complains of "only having 3-4 BMs a week. Now I have 5 or 6 a week!" I hate pharmaceutical companies. I guess they weren't selling enough to serious patients. Yahoo!

I am on neurontin but only at 300mg twice a day. I still can't believe that this "doctor" started you out at 3000 mg. When my brother graduated from medical school he asked us "What do you call the medical student who finishes at the bottom of the class? Doctor"

Ok don't start, there are some good docs out there, but we have to be absolute experts at our own diseases.

Wow, Lisa, you have amazing problems. I support you wholeheartedly.

Your comrade in arms,

Aloha,

Helencal

2/21/08 9:18pm

Aloha, Robyn. Everything I read says not to use these laxatives for longer than a week. How long have you been on the senna and bisacodyl (the Senna-S)? Does it still work after a while. Do you add extra fiber to your diet such as all-bran cereals or Benefiber??? How much can you exercise?

I really need your advice

Aloha and Mahalo (thank you)

Helencal

Lisa

2/22/08 5:08pm

Hi there,

I have seen that commercial many times here. I guess they had to make something that was so uncomfortable seem pretty to advertise. I am with you on the pharmacetical business if there one any market that is the biggest rip off they are it. My medicare d prescription plan won't pay for my fenteynal patches and their reason is the gov't is telling them not approve this med. Which is such crap because when I was on medicaid it was approved.

And right now they won't pay for my amitiza either. I am lucky that most of my meds are paid for, but it is tuff going without some of the ones that would make my life so much less painful and just more comfortable all around.

I do take valium when i can afford it, my dr. will write this script because i need it for two reasons. And he is very comfortable in doing so because the med has been around for so long he is aware of the long term side effects don't outway the addiction issues. And I am the type of person or not the type of person who has the addictive gene.

Thank you for being my commrade in arms, it is great to have someone like you who understands that we can't control the way our bodies function and that we really don't want to be sick. I know I would rather be working and be able to live my life like a normal person.

I know I have so many medical issues it is just insane.

I too had suffered from ptsd big time around 12 years ago. It was christmas eve and my ex was driving, we just left the mall for those last minute gifts. Well he pulled out into traffic and we were hit T-bone into my door. They never even hit the brakes and it was one of those old caddy's real big. Well my right hip turned back then inward. talk about pain. Well for days all i heard was the sound of the impact. I thought i was going to loose my mind, so bad it was i insisted that my ex take me to the mental hospital. They did not admit me but the next day I started therapy there five days a week. I had group therapy five days also. These group sessions changed my life, I got so much out of it beyond the ptsd healing. It gave me such compassion for other people and what they go through. Know get this one I have been in 8 car accidents and have been a passenger in five of them. And two where i was driving i was rearended by someone who was rearended. and the last one where i was driving this lady cut through 43 lanes of traffic and hit me. I went home and she went to jail had no insurance, no drivers license. And that one was my 5th accident in my 5th car i had brought, it 5/5/95 freaky huh! That was the last day i ever rode in a car without a seatbelt! And I still have a perfect driving record, life is an irony.

I was so sick last night i had the dry heaves for hours, because of a surgery i had my body cannot physically throw up, so i was left to suffer. On top of that for some odd reason i had the chills, but no fever and had a migraine. Today it was like it never happened. I am hungry, but am a little nervous to put anything into my tummy.

So how was your day! lol

Did I mention we have a water line break here and really have no water to speak of again.

Gotta laugh.

Lika

Robyn Goldblatt

2/22/08 7:17pm

I am on a bunch of meds, including morphine and that's what does it. Don't remember if I said or not, I am a 2 time breast cancer survivor (even tho fight #2 resulted in a bilateral mastectomy), and the damage from the chemo and radiation has left me disabled and w/chronic pain. I got lucky because I have a good pharmasist who told me about the senna.

Robyn Goldblatt

2/22/08 7:29pm

I eat fiber cerals, and the senna I take for a few days then stop. I usuall only start taking it when I start to kind of feel I'm getting stuffed up :-) Excercise is getting less as time goes by. I have walked the
ACS Making Strides
Againest Breast Cancer 5k for 8 yrs, this year will be 9.Last year the doc would only allow me to take part if I did it in a wheelchair. I had a dream of doing the Susan Koleman (I know I spelled that wrong - sorry) 60 mile 3 day. He cancelled that too.

Helencal

2/22/08 7:44pm

Mahalo (Thank you)

Helencal

Robyn Goldblatt

2/22/08 10:17pm

Thank you Helen. I look forward to hearing from you again, to my email if you like. I'm glad you have found the strength to continue hanging in. I know how tough that is, but you are an extrodinary person, and I believe you can overcome anything and be a great role model to ppl like me.

Lisa

2/23/08 5:54pm

Robyn,

I must say you are a very strong person! So much to deal with. My mom had cancer and I have seen what chemo can do to a person it is almost as big of a fight as the cancer trying to survive those side effects. I have had 3 benign breast lumps removed and have another that needs to be taken out. I can't even imagine the pain you went through with having bilateral mastectomy done. Does it run in your family? Is the cancer gone for good?

I too take morphine and it is a big help, I don't think my mind could live with the pain if i didn't have it. Are you like me in that the morphine does not effect your thinking? I know the fentynal patches can make me very cranky!

I hope that you are having a good weekend.

Well i am hurting so i will stop for now, have to answer a few other emails and then back to the couch i go.

lisa

Lisa

2/23/08 10:53pm

Hi there,

I was just wondering how you were doing today.

I had the most wierdest event happen today. Twice a month i go to a food pantry it is part of a community church outreach organization.

You sign in go into a big room and they have chairs for you to sit in and wait for your ticket to go get what ever they give you. Part of it is that someone normally comes over and asks if you would like them to pray for you. These people volunteer so it is all denomanations, so you never know what will happen. Now mind you I am a christian so a little pray could never hurt. While i was sitting waiting I was listening to another person in need have this loud blessing being said over him for about 5 minutes, all I was thinking was oh my please spare me the yelling. Wrong it was worse I got two of them. One stood behind me and place her hands on my shoulders and started to lightly shake my shoulders and she started to yelp, yes yelp! her partner his was talking his talk. I just bow my head and prayed that this would be short. Wrong again, it went on for almost 10 minutes. I thank them and was about to stand up to leave and they asked if i was ok, because i looked a little shook up. I didn't want to hurt their feelings in the middle of their pray and tell them that the shaking was hurting me. I just so I don't feel well and of course i was asked why. I said i have fibromyalgia and i am in pain. Well that just lead to another pray. About 20 seconds into this one I just had to tell them that the shaking was hurting me and that the yelping was making me want jump out of my skin. Of course i have to laugh over it all. But I know you can imagine the pain I am in now and have been since and the pain meds are not doing the job. I have taken 28mgs of morphine since this afternoon and my stimulator has been on all since i came home.I think next time i will ask for the rabbi.

Well I hope that this gave you a good laugh, and if someone asks to do a healing pray over you think twice! lol

Lika

Robyn Goldblatt

2/24/08 12:05am

Well, so much for feeling better after being prayed over Laugh

Whenever anybody asks to pray for me/over me, I let them if it feels right with the caveat that they can't do any laying on of hands. I'm sorry it left you in pain, but at least you can look back on it and laff, that helps. I know I was bad today, lifting more then I was supposed to. I got a free tree (electric co give away), then managed to swipe 3 more of the free palm trees :-), bought a bush for the back fence, a plant for me, and 7 pots of Petunias. I made 1 of the senior ladies very happy w/a palm and 4 of the petunias, and 1 other guy happy w/a palm and I forget what the other was. It's a start. I got lots of good info for looking at various ways of choosing what to put in the flower beds at the condos (I'm president of the association), and plant againest the back fence. It used to be a nice wood private fence, but the owner of the neighboring complex, took that down and put up a chain link fence. Got home and the rain started, so I have been sleeping, waking up every so often, but just in time to watch and stay awake for "House".

Lisa

2/24/08 12:20am

I hope that you got the story and understood it. I reread it after i sent it out and my english or lack there of showed. I am really not an idiot, but my brain is sometimes.

I really don't mind prayers i quite enjoy them and go see the chaplin at the hospital i was in for almost two years about every other month. we sit and talk for a few and then pray. It makes me feel good.

But these too were just out of their minds, I held back on some of my interpretations of them, i scaled it down not to offend anyone who might read it.

Well I hope that you didn't over due it too much and you feel worse tomorrow. I am sure it felt good to be out there working a little bit. That is good though that you enjoyed your day. Your electric co really gives out palm trees, is this a normal thing for them to do?

Florida has a law that you can't dig up a palm tree unless it is to be replanted somewhere else or it is diseased. It is like $5000.00 fine to do so.

Ok i will write more tomorrow i am getting sleepy

lisa

Robyn Goldblatt

2/24/08 1:06am

I understood what you were writing; probably cuz when I'm on my meds, I have been the same way :-) I'm in Kissimmee Fl. and yes, they are very picky about what you can dig up and what you can't. Every year they give away little trees to plant and in part help not only your electric bill, but water bill as well. So I am definatly looking at ways to help the water as well as plant some of the trees that were either taken out by the hurricances a few years ago or had to be cut down because of whatever reason. I too am getting sleepy and the cat is trying to tell me to take my meds and go to sleep! Sleep well and feel better tomorrow.

Lisa

2/24/08 7:45pm

Hi ya,

Do you take advantage of florida's life line program for elec and telephone? It has been a big help for me.

I'm lucky here i don't have a water bill. I am on a list for a state runned retirement condo's and my rent will be $360. a month, no elec, water and i think the basic cable is included also. Plus they have someone come in and clean once a month and they have food programs at discount prices and some other extras. The location is right across the street from sarasota bay going out to the beach.

My dad came over today and we went out to eat, chinese buffet. It was ok, but we had a good time and i told him about my experience yesterday.

Well my dear my back is a little soar from sitting in the hard chairs, so I think i will go lay down for a bit. If I am up later i will email you back and thanks for understanding about my writing. It wasn't the meds it is just normal for me to not think clearly about what i am typing.

lisa

pogo

6/11/10 2:30am

I take 400mg. morphine and 300mg. oxycodone a day and I have one to two smooth bowel movements a day. What works for me is eating oatmeal twice a day. This has been working for me for years. Also I try to eat alot of dried fruit and drink lots a water becouse I live in nowhere Nevada and fresh stuff is hard to get. Just a thought. Go with what works without making things worse.

mary jo bafile

2/16/08 11:45am

hi Helencal

my names mare, i've been a chronic pain sufferer since 1972 when i had a car accident and crushed and broke every bone on the left side of my body. i too was very active in sports and in life in general. i even started dancing hula at the age of 40, ancient and modern hula and since you're in hawaii you know how much energy it takes to dance ancient hula.

Yes, i'm in hawaii to, the big island. I've also had other injuries and problems that are major pain issues, i broke my arm and shoulder and crushed my wrist in a slip and fall 3 years ago, i have diabetic neurapathy, 2 heriated discs, headaches from a head injury, osteoarthritis, and adhesion pain from several surgeries. I understand what you're saying about support, i could use some myself. I have a wonderful doctor who finally got me on the right pain medication and proper dosage, i also have restless leg and take lorazapam for it; i won't take the new meds that are out now for it because of the side effects, i was on antidepressants, but i stopped taking them, but i do go to therapy and i stay busy and that helps, my depression came because of my problem with living in pain for almost 40 years. I go to aquatic therapy when my insurance allows me to go, i walk, i swim, my work advocating for people in chronic pain and for the disabled helps alot and i'm with the VSA Arts of Hawaii Pacific, i'm a photographer and that's 99% of what keeps me alive and going. I love photography, it helps take my mind off my pain and it gives me a reason to get up and go out daily and interact with the other people. 18 months ago i couldn't get out of bed because my pain was intolerable, thanks to my doctor I can now walk 4 miles round trip around downtown hilo with my camera, i'm involved with VSA Arts and our group is having our art shown in april in Honolulu. I've even mentoring one of the other students in the group. I'm still in pain and always will be, but my meds allow me to participate in life again, to socialize and move forward.

if you want to write me, i'd love to be a support for you, i could use some support too, i know how isolating being a pain sufferer can be. i hope you'll write to me, what island are you on? Bafile1@aol.com

Rob

4/16/08 1:39am

Aloha,

My name is Rob I live on the Big Island out in Puna. I have fibro too. I don't know of any men who have this pain. Mine started in 1998 when I had emergency surgeryfor a perferated ulser, I had to have a blood transfusion. We think that is perhaps a part of it along with the trauma. We had decided to move here due to the weather and I just started to get sick in the midst of the move (6 years ago). I found a doctor who had a clinic on Oahu and came to the Big Island a couple of times a month. I have been on about just everything. My last doctor called me a drug addict and refused to see me anymore. I now have a new doctor and hopefully we are building a good relationship although he does not think I have fibro. I have Kaiser over here in Hilo. If I had anything else I would be out of luck because as you know no doctor is accepting new patients. As of now I am on the fentynal patch, lyrica and anti anxitey medication as well as high blood pressure. I was an ice hockey player and a surfer. i worked construction (plumber and concrete finisher). I can work about 2 hours a day and then I am done. I have the most pain in my legs. Twenty seven years ago I was in a motorcycle accident and my left ankle was crushed. The doc put it back together with pins and screws and told me that by the time I was 50 the ankle would have to be fused. The pain is a 10 plus all the time.

I have an appointment in Oahu on May 6 to see the ankle/foot specialist in regards to the fusion. My wife and I both lost our jobs and are on unemployment and having to COBRA. I know my stress level is over the top and not helping a bit. Our marriage is strained as my wife is stressed out over loosing her job and not being able to help me. She found this site and has encouraged me to write. She knows she does not understand how much pain i am in and gets frustrated at me and life and herself. We both are so afraid of loosing our home it just mounts and mounts. I was accepted to a school to learn how to drive commercial trucks but I am not sure if my ankle will let me or when they see I have a fentynal patch. I really don't know what to do and don't know where to look for help or what kind of job I can do. We can't drive to Hilo everyday with gas the way it is.

I guess I am just rambling right now. I am to start this school tomorrow and am sick and nausated. Please write back perhaps me and my wife Em can meet you in Hilo one day for tea. I am sure I missed alot in my story but can add more as time goes on.

Mahalo for listening to me.

Rob

Helencal

4/16/08 5:42pm

Aloha Rob! We have rented here in Honolulu for over 27 years. Too expensive to buy here. Have you tried state vocational rehabilitation? Learn a new skill that won't require such intensive labor. Also, I have Kaiser and was put on 100% disability which helps out. Just living in this state is such a plus...the lush tropics, almost clean air (the volcanic eruptions aren't helping.) I know what it means to be active and I too am suffering the consequences. I have owned Indians, Nortons, and Harleys. My last bike was a Kawasaki 1100.

I hope things go well with ankle surgery.

Take Care and Aloha

Helencal

Jeanne

2/16/08 2:50pm

You've been through so much, but you're still offering support and information to others when you reply to them in the comments. That shows a lot of strength and kindness. Big Smile

I have chronic pain from inflammatory arthritis and fibromyalgia, and I deal with depression because I'm bipolar. I know you said there were few providers in your state, but imo, getting the depression under control is vital. It's extremely difficult to deal with chronic pain, but fighting depression on top of it is almost impossible. It can be really difficult to find the right combination of meds (even just the right med that works without the awful side effects) and therapy, but please keep trying. You're a warm and giving person.

Helencal

2/17/08 1:43am

Jeanne, Thank you so much (Mahalo Nui Loa from Hawaii). I've been diagnosed with everything from psychotic depression to bipolar to atypical depression to....whatever. Multiple meds, all with terrible side effects. I'm better and clearer without psych meds...but the depression does return as Winston Churchill commented on..."his black dog".

My twin sister hanged herself and the psychiatrist that I had for 11 years told me that me that I would complete suicide one day. Now there's a cheery doctor! But I know the hurt that I would cause my husband and nieces and nephews and I couldn't do that to them.

There re many days when I feel as if I'm the most worthless person on the face of the earth, but that's something I have to work through. That is worse than the pain.

manicbeatz

2/16/08 8:46pm

Dear Helencal, I STRONGLY suggest that you get into 1 on 1 counseling! Oh I can Sympathize!!! I say sympathize rather than empathize is because the pain and lack of any doctor, at the time, willing treat it effectively drove me to an attempt at suicide. My husband said when EMS got to me I had no pulse and they could not get a blood pressure. The look on my husband's face when I FINALLY came around was heartbreaking. My parents came to see as well. I was in intensive care. I can still see the pain and worry in their eyes.

I got the "pleasure" of spending a week on the psych ward after I was out of danger. I too did not WANT to die. I just needed the pain to stop. Suicide is NOT the answer. Been there , done that and will never go there again. No matter how bad the pain, the pain I saw in my family's eyes was enough to make me realize what I had done would leave them with a heartache that time would never heal.

My prayers are with you. Reach out in those dark times. Think of those who love you and WILL be there for you. We are always here. Take care and may your day be a good day.

Helencal

2/17/08 1:29am

Thank you (Mahalo in Hawaiian). I am finally getting psychiatric care in two places via my husband's benefits. I really appreciate your sharing.

PJB1963

2/20/08 2:37am

I wonder how many of us there are? My cousin has it worse than I do. I continue to work but my toe muscles contract (as well as other muscles). I don't know how much longer I can work. I have a daughter living at home. She is 23 and finishing college. My husband died 2 years ago. Whow, no wonder I'm depressed...

I just don't want to feel the way I feel. I feel, at times, like I'm already deceased. I went to the doctor yesterday and he is referring me to the pain clinic. I have Kaiser Permanente insurance.

I'm thinking about what you have said and thinking about myself also. If I didn't have my cousin to talk with, I don't know. She's my life line. She'll call and say, "There's a front coming threw...Have you felt it?" What bothers me is there doesn't seem to be any reason for what I feel when I feel it. I thought they said that fibromyalgia doesn't get progressively worse but I feel like I am. It's the quality of life.

You know, when the pain gets so high it is very depressing. One of the things I discovered is a chiroprocter who is also a massage therapist. Imagine that...He is terrific. We can't clone him. Have you tried massage? The problem with that is I could use it every day. I recently read a book about how to attack (my word) your own trigger points. It was amazing.

I haven't read what the others have written, but I'm open to talking on the phone if you want. I was in therapy for a long time and I seem to have learned how to be at least somewhat therapeutic. I am not judgemental. My cousin, Nancy, sounds like she had at least part of your life. She had horses, well, her parents did. She had a successful adult foster care home in her home, as her business. She lost it all. She is living with her daughter and her family and it seems to be okay.

Anyway, as you can see, I can talk forever. I can also listen. I read everything I can to help figure out what is going on. I can't exercise, I'm sorry. I haven't gone to water aerobics. I'm sure that would be good for me. I'm currently getting fitted and using the machine for sleep apnea. I wouldn't have know anything about that but my cousin had insomnia one night on a trip and she watched me sleep. I have moderate sleep apnea. My doctor said it comes with the fibromyalgia terratory. He said he didn't refer me for the sleep test because I don't have a short, fat neck, which is usually what people have who have apnea.

Well, I am turning into a pumpkin. Got to take my meds and go to bed. I won't stop taking the pain meds. I think what I'm on right now isn't working any longer but I know it will get better. Let me know if you want someone to talk with. I may not be the person you can relate to so I won't feel bad if you don't want to talk. I can email also. I think if you had some pain control you would feel better. (that goes without saying) My cousin's doctor said her adrenal glands have burned out. She had too much stress for too long. We're out here. You aren't alone. Sincerely, PJB1963 (I can't remember for sure)

Helencal

2/20/08 7:37pm

Aloha PJB,

Helencal

2/20/08 7:48pm

Aloha PJB,

I also have PTSD which is what I am concentrating on now with a good military psychiatrist. It's about as bad as the fibromyalgia. I have to conquer my fears and reprocess my past...oh dear.

That's a common expression in the medical field that your "adrenal glands are burnt out". It's just an expression...the adrenal glands are still there. If you hear a doctor say this..ask him to explain what he is talking about!

I've let my anxiety and fear rule my life and I have to find some peace.

I have a constant concern of my oxycontin and other pain pills being stolen by an addictive family member, so I have to lock it in a lockbox, keep it hidden and take it with me wherever I go. How's that for constant stress! The son-of-a-gun.

Anyway, hang in there and we'll keep communicating.

With aloha and love,

Helencal in Hawaii.

PJB1963

2/22/08 3:46am

I recently started reading some books written by Tom Hartman, who also has a talk show on Air America (AM radio). Listening to that station has been a God-send for me. It's called "Progressive talk radio." Anyway I discovered that I had already purchased one of Tom's books called, "Healing ADD." I had the book but hadn't even looked at it because I thought it would be some quack. Well, he has some very interesting ideas and beliefs and exercises (mental exercises) that people can do alone or with a therapist that sound really amazing.I can't explain it so I'll have to refer you to the book. It's really different and seems that it could be extremely useful. I recommend you look at what he recommeds. I'd love to hear if it was helpful for you.

I really appreciate that you responded to my response. It's really interesting to hear what medications everyone is using. It seems that everyone is taking something different. I haven't tried the needle therapy. I can't remember the word for what it's called. Acupuncture-that's it. I understand that Hawaii is very expensive. How about we have a gathering in Hawaii. I know nothing about the expense of renting a motel room but it shouldn't be difficult. I know this is a little sudden and forward of me. I just got here. But I enjoy meeting people. I'm sure we could think of some fun things to do. (Modified of course for our verying levels of pain.) And, of course, we would all understand if someone couldn't participate. You know, my husband was very ill and we moved our family from southern California (inland-hot-smoggy) to Oregon. I have extended family here. My husband and I both took early retirements. We had two children. I remember when I got here it seemed to me everyone I talked to was uncomfortable talking about what we were experiencing. It's really hard to make a friend when you are physically unreliable, complain about being in pain all the time and don't like to shower! I just couldn't make "nicey-nice." Roll Eyes (I had to play with these little things.) I have to sleep now. It was great hearing from you. PJB1963

Helencal

2/22/08 3:45pm

Aloha,

Well

Helencal

2/22/08 4:07pm

Aloha, Well my last email got lost in cyberspace, so I'll try again.

There are no motels in Hawaii..just mostly expensive hotels. If you are both interested, you two could find some out-of-the-way beds and breakfasts on all the islands (except the island of Niihau[ rivately owned--no visitors allowed] and Ka'ahalawe the Navy used it for target bombing and is off-limits due to all the unexploded ordnance). Look for the website of frugaltraveler. He just had an excellent article on Hawaii. There are also our wonderful YMCAs which would put you closer to the acupunturists and other Asian healing modalities.

I am a very private person and no longer can deal with any extra energy, but I do wish you both the best of luck with Hawaii. It's still "chilly" here with a low of 65 and high of 81. We are so spoiled...but midday is nice.

I will look at Tom Hartman's book. I like Air America but was saddened whrn Al Franken left to run for the senate in Minnesota.

Best of luck

Helencal

Carol

2/22/08 3:55pm

Helencal:

Just read your post. Along with so many others, I identify with what you've said. I don't think there's a day that I don't say, "Lord, please take me Home," then I think I shouldn't be saying that because "you are what you think about," and that can't be "healthy." Life just plain isn't fair. We all know there are so many people far-worse off than some of us, but that "saying" also puts a burden on us, as we then (at least I do) feel badly that I'm complaining about my lot in life.

Last Valentine's Day, '07, my cousin took his life and the life of his 7 year old son. His parents and the rest of the family is still "recovering" from this. I won't tell you any platitudes or say that things will get better cause they can't get worse, but I can tell you that I understand perfectly how/what you're feeling and that I'm so sorry. I've had Fibro., migraines, RSD, and other things since the early 1970's, and for me, each year there seems to be something NEW to deal with. I, too, have recently been plagued with TMJ, the MRI showing that I'm on my way to an oral surgeon. How I can possibly get through any oral surgery, only God knows. Let's keep each other in our thoughts and prayers.

Carol

Chip Holk

2/23/08 10:57am

Hello Helencal,

Forty years is a long time to deal with constant pain!!! I have been dealing with it for almost 21 years now and can understand what you are saying and where you are in the cycles that come with the pain and depression!

Right now, I am rather afraid of what the furure may hold for me, as it seems that the constant pain and tight muscles in my neck have taken its toll on my ability to swallow as the flap that is supposed to close when one swallows is not closeing all the way and I find myself waking up at night chocking all the time now.

The medical people have told me that this may end with my having to use a feeding tube to eat.

I live alone and now my youngest daughter is going to move in here with me this weekend so that if I start to choke and need help, she can be here to help me.

I have been doing the exercises now for about two months and there has been no improvement. There is one last thing to try and that is electrical charges to attempt to get the muscles to work. Depression is huge in my life right now, and I also suffer with ptsd which is worse now than it has ever been.

I guess what I am trying to say here is that one should be careful of what they do, especially if there is a work related injury involved as the insurance company will use what ever they can to get out of paying the bills that they should be responsible for.

That is my position right now, in that I attempted to do other work than what I was doing when I was injured when the car I was operating was hit head on by a drunk driver. The insurance company has tried everything they can to get out of paying for my care.

Back in 1996, I had a spike in pain in my upper back, chest and arms and the doctor wanted me to have a new mri done to see if something had shifted or what ever. Of course, I needed to get approval from the insurance company to get the test paid for. However, after a week of calling them and not getting any reply, the pain got so bad that I went to the hospital in the early morning to see if I could get some stronger medication for the pain. Well, upon arriving at the emergency room, the next thing that I knew was that I was being hooked up to all kinds of machines and being told that I was post heart attack!!!

Anyway, that is the way that the last 21 years have been for me! Part of my problem was that for reasons that are beyond me, the doctor that was treating me from the emergency room as well as the doctor he refferred me too, both thought that I was faking my injuries. Now, I have my throat problems as well as atrophy of both hands, arms, upper left back and left neck, not to mention my leg problems.And two broken vertabrae in the my upper back that the medical people did not find until like six years after the accident, at which time they told me that they could not do anything as the injury was too old.

From the very time of the accident, my life has been a bad nightmare.

This just goes to show that if one suffers from chronic pain for a long period of time, we need to be careful as other symptoms could be masked by the pain we experience everyday. And, because the symptoms can be the same as other serious problems, the doctors may even miss something just as they did in my case.

You are not alone out here Helencal. I will include you and all those who suffer with any kind of physical pain in my daily prayers.

GOD BLESS

Chip

Mox

4/12/08 4:22pm

Please know that you are not alone! There are many of us out there that feel the same frustration and desperation that you feel. I have been dealing w/ chronic pain for 20 years and sometimes it just wears you down. I encourage you to continue to try to find medications that reduce your pain level, and try to find some joy in the little things. Cymbalta was an amazing medication for me, my pain was reduced and my attitude better. Hawaii has a lot to offer and slowing down and finding low impact exercise seems to be the local way. I wish you the best and I hope that you can find a way to see the glass as half full instead of half empty.

Helencal

4/15/08 8:42pm

I tried cymbalta...but as usual side effects were overwhelming. I am very suicidal as I do not have the energy to get outside into paradise. I just have to keep trying.

Thank you for writing.

Aloha

40 years of chronic pain

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