New to this group- excited to have joined

By rockabillychick Tuesday, June 17, 2008

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Hey everyone- I am new to this group. I am excited to have an oppurtunity to chat with other people who deal with chronic pain each and every day. I have been dealing with my pain issues for a bit over 5 years. Been passes around from doc to doc each with a different diagnosis and treatments plans that failed. Finally after moving to austin and seeing a spine doc here for a year she sent me to a pain clinic with an MRI. I am finally having proper treatments for my spine and hip damage I incured over 4 years of bearing all my weight on my right side while I healed from 4 surgeries resulting from several severe breaks I had in my left leg. I feel very blessed to have finally been sent to a clinic that not only treats pain properly but also with dignity.

I am looking forward to chatting with other people with families in particular, i know that this has had a major affect on my kids and my husband. It would be nice to have someone to talk to who can truely understand what I am going through. I tend to spend most of my time concerned with what it has made my family go through. So I try to not talk about the pain or the new med I am trying or what ever it is each day. That is not easy all the time since it is a 24/7 issue.

Right now I would love to get some ideas on some ways I can keep the weight off!! I am very limited to what physical activies I can bear, most cause outrageous pain. I am starting to think my medication may be causing weight gain as well. I noticed I have been putting is on way faster then normal. I am sure I am not the only one in this situation. Anyone have any good tips on keeping the weight down?! It seems silly to put it on when extra weight will only make the joint issues worse- lol!

Please feel free to chat with me- looking forward to making some new friends

rockabillychick

Comments (18) | Add comment

amebaluv

6/19/08 9:04am

I'm a single mom. I have generalized Dystonia. I try not to talk to my family or friends about my pain. They will never be able to understand what I'm going through, It just stresses them out. I find talking to people with chronic pain will listen because they understand. It helps to vent once in awhile, we can't hold that scream in forever, it's all about learning ways to cop with whats going on for that moment. TodaY IT FEELS LIKE SOMEONE IS TRYING TO PULL MY ARMS OUT OF THERE SOCKETS. This is everyday, but some days the pain meds won't cover it. That's just one part of my body, I could go on and on, but I don't, keeping a positive mind and additude is important..EMOTION! effects pain in a big way expecially for Dystonia. Music is a big help and laughter is a cure all, but I believe sex takes away a lot of pain for me. I figure it releases endorphins, taking the pain away and it's fun too!

rockabillychick

6/19/08 10:20am

Thank you for your message. I have already found some peace of mind with this support group. And I am super greatful that I have finally been pointed to a pain clinic. My last doc was a spine doc and she just couldn't help me- kept me on norco for a year, constantly had delays with refills. I would call the pharmacy with the request 48 hrs early (the doc requred a 48 hr window to get it done) the pharmacy would wait 2 days to contact the doc becuase i had requested too early, the doc would then take 48 hrs to fill it- there is 2 days with no meds!!! Ended up in the hosptal 2x for that one. or the pharmacy would go ahead and request it even though it was 48 hrs early- after i explained to the phramasist that my docs machine says to give them 48 hrs and then the doc would deny because it was too early! craziness!!! finally i just started calling the doc derictly and explaining that i am calling it in today because i need it tomorrow, with a 10 day refill that got to be a drag for everyone involved. finally after a year she turned me over to the clinic- fortunatly she could see that i was truely suffering. the clinic is wonderful, i am getting my 3rd prcocedure in a week (so far they haven't really helped, but they keep recommending them so i am assuming adventually they well, i am not a huge fan of all the steroids. i read somewhere that it can lead to bone lose- soemthing i struggle with anyhow). but they have been great about finding the right meds for me. we are still working on that- it has only been 6 weeks iwth them. they best thing they have done is explained to me that there is a very strong chance that i will be living with chronic pain for the rest of my life (I needed to hear that from someone in a lab caot to believe taht i am not nuts) and they have talked to me with dignity and not an undertone of "is this person just out for drugs?" I never talk to anyone outside of family and my doc (and now this group) about my meds- I am always afraid that there will be that ? in their mind. i don't want to be judged unfairly, and i don't want to bring on anyone who may be looking for some. it has been wonderful to read things people in this group have written. after so many years of being in pain and not finding help, doc after doc, passing you around you can start to wonder if you are truely crazy.

i noticed you said you were a chef. tell me about that.

I am in culinary school right now- that i know i am crazy for!!! i sold my martial arts school that we owned for 8 years- sold it becuase i was in far too much pain to teach any longer and even just doing desk work was too difficult, i was grumpy and it was showing to the customers, so we sold it and moved to austin. i was accepted at le cordon blue- my childhood dream came true. i am insane to have started school- it is soooo painful- so labouris. i have already had to take a medical leave. i only have 13 weeks left of school!! my doc knows how important it is to me to finish- even if i can not work in the industry when i am done. they are workign hard with me to keep me functional so i can get through school with a diploma.

Thank you for writing!

I commend how hard single mamas work! You ROCK!

rockabillychick

Mattsmon

6/19/08 9:17am

May I first welcome you to this site......I hope you find some relief in talking to us about your pain, as we have all been there. The issue I wanted to address is the weight gain. Often with chronic pain, one of the first meds they will prescribe is an antidepressant because not only is being in pain depressing, but for some inexplicable reason, they help with the nerve endings and pain. The only one that worked for me was Paxil, unfortunately, as that is the big daddy of weight gain. I am fortunate that I have a morphine pump in my stomach for failed back syndrome after many multiple surgeries and "procedures" to help me. The morphine keeps my pain level to a 5 or 6 daily (on a scale of 10) and I can function as such, however (and it's a HUGE however!) you may have to decide that the benefits of the drugs outweigh the side effects, one of which is definitely WEIGHT GAIN. I have put on 35 pounds in the past 6 years and have been to every weight loss program there is to no avail. If you are on morphine, you also are aware of what that does to your other systems, specifically the "elimination" one! When I tell the doctor I eat very little (the more that goes in, the more that has to come out and you know how trying THAT can be on morphine!) he simply does not believe me. I am able to walk for 2 miles a day, and do my back stretches, but that is the extent of my exercise.....I also eat fewer than 1100 calories a day to no avail. I have managed to switch from Paxil to Celexa hoping that it would allow me to lose a few pounds, but nothing so far and we are into it a few months. Try to be patient with your family.......you are right.......it does get very tiring to them to listen to what new thing you are trying. They love you and just want you to be "all better" which is never going to happen again, barring an unforseen miracle. You can vent as much as you want on this site and we will listen and try to comfort you as best we can. Chronic pain patients are a family and most of us share all the gory details. As for the weight, as my gastroenterologist says "What's a little weight when you can control the pain? You can be crippled and thin, or active with a belly, it's YOUR choice." My choice is to listen to his wise words and get on with it! I wish you well!

rockabillychick

6/19/08 10:31am

Those are some very wise words- a little weight never "hurt" anyone! LOL! I will keep the weight. I am very private about my pain meds and such with anyone outside of my family and doctors (and now this gourp), if anyone asks my why i have gained weight i can always blame it on culinary school, I am a pastry and baking chef in training! not sure if i will do much with the education- i have 13 weeks left of school adn it has been such a terribly painful experiece i am not sure if it is the right career for me anymore. I am on Kadian- a morphin drug and percocet for break through pain, and a nerve med as well. since they make me naseas i take a med for that as well. I am concerned about constipation- so far it has not been a terrible problem, but when my spine doc had me on nothing but norco it was terrible. have you tried any kind of over the counter stool softener? is it ok to do that? my new doc said i may have constipation with the kadian. I am not looking forward to it, but at the same time it is so wonderful to only have to take those meds 2 times a day- rather then every 4 hours. I tried the fentnyl patch for a week adn i couldn't get teh damn thing to stick! our school kitchens get far over a 100 degrees, 14 ovens running, 30+ stove top burners on high- it is hot!! and the more i sweat the faster it fell off, i tried everything short of duct tape to keep it on and i ended up with a huge open sore from the tape! very funny when i look back on it, not so funny when it happened.

what is the pump like- i have read here and there that it is rather large and protruding?

Thank you for writing! It is such a wonderful thing to get to see that their are many many other people out there with chronic pain- I am not alone and I am not insane!

rockabillychick

Lisa

6/19/08 8:44pm

hi there,

I was reading your comment to the newbee and i just wanted to touch base with you real quick.

I take amitiza for my consitpation. I don't take it every day, but when things get real bad I can take three or four for a day or two and it works internally on the way out to make things move. after a couple of days of this i may not have to take anything for a couple of months. Now mind you i have gastroperesis also and have had surgery for it and i get botox internally for this also, so if it works for me it might work for you. I suggest that your dr. read the material

I also take water pills to get rid of some of the extra weight. i gained 40lbs and have lost 20 of it.

I see my pain mangtment for pain, gi for tummy and primary for all other meds.

lisa

rockabillychick

6/20/08 10:17am

thanks for your message.

i will talk to my docs about the weight gain, i have literally put on a pound a day since they added the kadian a week ago, they doubled it yesterday so i will watch the scale carefully. it does feel like it is nothing but water gain, i have never had that before. i feel mushy, soft everywhere (mostly my belly, hips, ass, upper thighs, even my upper arms and neck, you can see it a bit in my face) i am not surprised to have the gain, but 8 pound in a week and a day now- that seems abit unnessesary. If it doesn't stop the way it is going by monday i will call them. Maybe it isn't just normal weight gain.

Lisa

7/12/08 7:45pm

Hi again,

Please forgive me I read your reply and saved it on my email thinking i would get back to you the next day. Well then i had so many emails and other stuff i my end i thought i had written you back. pain medicine oops.

Anyway how are you doing these days are you still gaining weight? Did your dr. think it would be a good idea to take the water pills? I have lost 5lbs since we last email and it is because of these pills.

I have l lump on my upper left arm that is causing me pain. I had an c-scan and i will meet with the surgeon next week. It is not cancer or anything like that. My dr. told me that it will continue to grow and cause more pain so i am willing to have it removed. It is attached to the arm muscles that we know of so far, so i am going to a vascular surgeon so it will be done right. I am not looking forward to the recovery period.

I hope you are feeling better and have found some answers that will help you please let me know i have not forgotten you at all, i was waiting to hear back from you. lol

Misslisa

rockabillychick

7/13/08 10:40am

THank you for checking in on me- very appreciated!

I have been through some major struggles since the last time we wrote, weight is not really on my mind right now. I had a severe spike in my pain that has lead my doc to send me to a surgeon. I am relieved as I have been telling all my docs for almost a year now that there is something very wrong that needs to be fixed rather then just treating the pain. They uped my meds in the meantime. I never thought I would be so happy to see a surgeon! Sounds like you know what I am talking about. I will deal with the weight too- I have steadly put on the pounds! It is a bummer to not fit comfortably in clothes i had just bought at a memorial day sale! I am a pastry and baking student at a le cordon bleu school (how I manage to get through each and every night of classes is beyond me, the pain is so intense I have to believe it is gods hand that pushes me through everytime!) I am sure my "tastings" there are not helping me with my weight goals! LOL! We are required to taste everything, but as I have a new found craving for sweets and chocolate (nothing i have ever even really enjoyed eating before- just loved to make) I have a bit of a control issue with my eating at school. I see my doc again soon and I will mention the weight and water pill- infact I will write it in my notes right now.

I hope your surgery goes beautifully! Is this type of mass something you have dealt with before? I hope you have a support team ready to take over cooking (and all the other everyday things we manage to do) while you heal. My family never knew how much i do until i started having surgeries on my leg. even with all 3 of them working hard i still had stuff to catch up after i was ready to walk again. that lead my husband to get life insurace on me- funny but true!!!! YOu would think hte new found appreciation would last a life time- but it was more like a week. Got to Love them anyhow!!!

Wish you well and write soon

Itsmyparty

6/21/08 4:30pm

It's just so frustrating to me that this kind of treatment by doctors and pharmacists and "society at large" is considered ACCEPTABLE.....isn't it?? I, too, went thru years of TRYING to 'manage' my pain with narcotics...and all the hassles from rude pharmacists who questioned my diagnosis (RSD/CRPS), and, the NECESSITY of pain medication (who do they think they Are??), to doctors who run you around playing head games....("I think pain patients NEED narcotics, and I have NO PROBLEM with my patients using them. I just won't write the script".)

Come on , Docs, your patients deserve better. Unfortunately, the medical community is still a long way away from coming to ANY kind of consesus about What Pain even IS ( is it a sensation? a Perception?) ...neverMIND how it is best treated!! Three different "Pain Specialists" will tell you 3 different things! It's frightening and lonely and demoralizing....being a pain patient! Hang in there, remember this is YOUR one lifetime and refuse to concede everything to the Pain Monster.....and the "Machine" that is really not doing too good a job HELPING patients with Chronic Pain (That would be Modern Medicine)

RobertBusby

6/22/08 7:18pm

Trying to lose weight when you can't exercise is really tough-especially if you're short like me. I went to an alternative doctor (chinese but Wester trained in gynocology) who told me I was allergic to wheat and dairy. When I gave those foods up, which was really, really hard, I lost 35 pounds.

I have fibromyalgia and arthritis, and so have days I can't get up the pain is so bad. Others, you'd not know there was anything wrong with me. I never know when the pain will strike. But eating mostly plant-based diet has helped me stay trim enough to not carry so much on the joints. Good luck, I know from experience it's not easy! Ann

makeupgal

6/23/08 12:32am

Dear Rockabilly Chick! (LOVE your name!)

As I read your various posts, I felt as if I was reading about me. I feel that way quite often when I read Chronic Pain Patients feelings.

We are ALL one big family in the CP world. We understand each other, we know that "I couldn't get out of bed today, or I couldn't go to work", is a real statement that means something, and we believe it!! It comes down to one of my favorite sayings that is also a book that I would recommend to anyone.

"YOUR PAIN IS REAL!" Is that not a seeming DUH to us that suffer from it? Well, as I saw you write, that after awhile, we may start to doubt it all ourselves!! This book covers about all the pain issues anyone could have, and some of the best treatments out there for most diseases. Speaking of diseases, another poster above was kind of asking out loud 'what is our pain'??

Pain is now a disease in itself. It is no longer thought to be only a symptom of another disease/disorder. It is it's own disease.

I have been through it all. My back is the main place of my pain. I am post-surgical times 2, knee surgery times 2, and about every single procedure available including my last and most hopeful one: A Spinal Cord Stimulator Trial. Instead of the machine and implanted wires innervating my back, I was having buzzing abdomen and right leg. Hmmm. And I had to be awake in the Operating Room to tell them when and if I felt the machine as they placed the leads inside my spinal column. That was not fun. I left the OR still saying it was buzzing in my tummy, not my back. When in the OR, the surgeon said I had tons of scar tissue and the only way to place the leads for me would be to open me up, just like another back surgery. I tried for 3 days, the trial time, and had little to no help from the Rep that was supposed to keep in contact with me during those three days. That didn't happen either. So when I went in to my Pain Doc, and she knew it hadn't worked, as they pulled out the leads, (ow), I felt a horrible sense of dread. That it was my final chance to have something other than meds to help my pain. I could tell that it would probably work quite nicely, as the 'buzzing' in the back takes the brain into the mode that the back is not feeling pain impulses, but another impulse.

I just started back to work as a nurse last week after a few years off the floor. OMG I thought I was going to die!! It was so hard, and then I found I hadn't brought my pm dose of my main med. The next day, I couldn't even go to work. Great calling in on my 2nd day eh? But I will not put my pain into an overspin just b/c I had my 2nd day of orientation. Life is OUR LIVES, and sure, I need to work to pay the bills, but I found out I cannot do that certain position. Found that out in one 8 hour shift.

Well, welcome, and I'm so glad that you have found some solace here. You are among friends and people who UNDERSTAND YOU honey!!

Oh, and I write a blog on Chronic Pain, @ http://shaunaslifeinpain.blogspot.com

Stop by and read for awhile! And on the constipation subject, I have a post about ACTIVIA yougurt. It really really works! I haven't visited the restroom for THAT so many days in a row....it does work. I just have to remember to eat it!!

rockabillychick

6/23/08 11:08am

Thank you very much for your message- I really needed to hear your advice today. I am going in to see a doc at my clinic this afternoon- called first thing this morning to get an appt after having to go to ER on saturday night. I have a terrible habit of under exagerting my pain when i see docs. i am sure that has lead to them undermedicating me. i know now that i need them to get a bit more aggresive. I am sooo terribly afraid of having it get that bad again. I am also afraid of asking for stronger meds, I can't shake the fear of being pegged as an abuser. I had to sign all this paper work at the clinic stating i will not take more then prescribed- on saturday i tried taking an extra percocet for the break through pain and still had to go to ER- that was the worst it had ever been! i think they need to try something stronger for both the maintaince and break through. now i just need to courage to say so! my mom is going with me and my husband may make it as well, i am sure they will make me speak up!

Mattsmon

6/24/08 8:54pm

It's me again! Sorry for not getting back to you about one HUGE issue for me which IS THE CONSTIPATION issue, but I just came back from a six day emergency hospital stay once again for some additional hardware problems (old and hopefully soon to be removed!). I know you have received many excellent suggestions in the past few days re: constipation, but there is a new one that has literally been a God send to me and I have tried them ALL, including the Amitiza (not effective for me and all of the Activia products as well) and everything new through the past 14 years. BELIEVE your doctor when he/she tells you this WILL become an ongoing issue. I took it very lightly at first because I have always been a one cup of coffee, head to the potty kind of gal and never understood people who had those kinds of issues. It is a painful truth with any narcotic meds that you have to be DILLIGENT about your bathroom issues or you can end up in a whole lot of trouble (and I won't scare you here by telling you about that!), but my new one is called "Symax Duo Tab" and it is a colon relaxer. Mind you, you still need to do your fiber (there are some great, not so disgusting new ones out now like Citrucel chewable CHOCOLATE and CARAMEL chews and not the fiber tabs) and be sure you are hydrating yourself as much as you possibly can. Sometimes, no matter what you try, it will be an ongoing burden, but don't let it get ahead of you. Persevere until you get the treatment you deserve. DO NOT UNDERPLAY YOUR PAIN to anyone, especially the pros. I know that there is a percentage of the "bad" public who tries to get the drugs we need to live our daily lives on just to get high or sell, but a true, caring doctor will only be able to help you as much as you are able to be completely honest with him/her about what you are feeling. Pain is the body's way of saying "WHOA, something is WRONG" and don't ever let anyone tell you differently. There is only one way to survive chronic pain and that is to move THROUGH it, get the best help available for your case, pray for God's help and know that everyone who reads your struggles on this site only wants you to be well. You will never go back to the way you were.....we were all "normal" at some point!, but you will find a new "normal"!!!! HANG IN THERE!

Matt'smom

rockabillychick

6/28/08 9:48am

Thank you so much for taking the time to write! I did see my doc last week and I took my husband with me to back me up- I was much more open about my pain and did not down play it like usual. The doc listened and did change my meds and set me up for my 3rd procedure this coming monday. He did not do anything when I told him that I am concerned about constipation- he just said ok. Everytime I go to the clinic I see someone different and they all have their own ideas and things they focus on. I scheduled my next apt with certain doc i have seen before and really liked. she took the time to answer my questions and I agreed with her approach to my care. I will keep doing that so I can get consistant care.

This group has been so wonderful- I have noticed that since I started using it I have become more at ease and more accepting of my new life.

I am also going to see a councelor who works with chronic pain patients. My husband and I are also goign to start seeing a marriage councelor on sunday but I really need to talk to someone who will understand what I need. It is so different then before I was injured. As much as I may try to still be who I was, I never will be again and it is not only a physical change but an emotional one as well.

Thank you again and I hope you are well!

rockabillychick

7/ 8/08 10:00pm

I too live in the Austin area & would like to know who has helped you. I've had hip pain daily for almost 5 years & so far none of the doctors I've gone to can find a cause even after X-rays, MRI's etc. I've always been healthy & active until I took a trip to see my son come in via ship fm Iraq. It was a 2 day trip up there, driving 12 hours a day. On day 2, I stepped out of my truck & almost fell to the ground with the pain...now I've lived with it every since. I was 48 yr's old & 120 pounds, now I'm 53 & 140 pounds. Some days are so bad I can't walk for several hours & some days just an irritant, but the pain is always there day after day without relief. No longer can I exercise for more than 10 or 15 minutes at a time & nothing to gain but more pain. Even going to the grocery store is an activity I dread as the next 2 or 3 days will be horrible. I've suffered with migraines almost my entire life, so I understand various levels of pain & therefore I know how to deal with quite a large amout of it for long periods of time. It's the constant day in, day out, that's wearing me down. Any direction would be greatly appreciated.

rockabillychick

7/ 9/08 9:25am

I go to a pain center- it is only for pain managment. I am not sure if it is a place where you can go on your own of if you need a referal from another doctor, I do know that if i was not refered to them from my spine doc my insurance would not have covered it and they are not cheap!!!!! I had been seeing my spine doc for 6 months very regulary- doing all the tests, treatments and meds she could do for me at that point she had to send me to the center. there they are able to do more intensive steroid injections and other types of meds. They are also able to send me to a spine surgeon this month! that is a horay and a boo hoo all i one- LOL!

There are several pain clinics in the Austin area.

Are you currently seeing a doc about these problems? If so I would recommend that you immediatly talk to them about getting a referral. You will also have to continue seeing your normal doc even as you are going to the pain center- they work in tandium wtih them.

Also check with your insurance co to find out who is in their network. I have recently found out that the buck does not stop with the doc but with the insurance co when they refused to pay for a med even though my doc had writen the script!

I wish you the best- lucky for you Austin does have a lot of places you can get help and i know the people are wonderful! they are trained to understand pain and how real it is. Google is a great way to check them out too.

mike ligeti

8/ 4/08 9:56pm

Hi There-

Excuse me if I don't follow some of the protocols for blogging or whatever we call what were doing. I'm not a "regular"and don't have a sight if I'm supposed to. My email is reliancemike@bellsouth.net. I have been suffering with chronic pain for almost half my life. I'm almost 50 and have had a morhine pump implant for eight years and Im going crazy with pain. I had just got things it under control and then I got in another car accident and have really suffered now.

It sucks! (Pain that is.) As you probably know. I'm actually on this website chgecking out marinol (pot) for pain control. I enjoyed it as a teen but wasn't in pain then. I remember it made us laugh alot. I own a home nursing and physical therapy company now. I need to be straight talking with drs and professionals. I have alot of stabbing and burning pain along with muscle spasms and wondered if it helps.

Now, about you and your question. The best way to try to reduce your weight is to reduce your consumption. Sorry, no easy answer. Just try to do reduce food and do anything you can to get your blood moving. It is great for the body and for the MIND. I know-I know- it ain't easy. I've gained alot of weight with the meds that slow down your body so much. Then, on top of slowing down your body the drugs make you want crave even more junk food (at least for me.)

Do you know any sight or have you heard of anyone on Marinol? I'm Curious.

Good luck,

michael in wellington

sickntired

10/ 3/08 3:04am

hello,

i am new to this group and man am i glad i found it! i've never thought of using the internet to get help from people who have been where ive been. duhhhhh!

anyway, i just joined tonight and i while i am not happy that others suffer my pains, but it's the knowing that i am not alone.

thanks for you all being here! pain! geezzzzzz...am i ever so sick of it. so i'll just smile and somehow, don't ask me but it makes me feel better, if only for a moment, it is so worth it!

peace & love to all~

New to this group- excited to have joined

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