Friday, June 01, 2012

Seeking suggestions for a chronic pain support group

By Betty Boop Too Saturday, November 03, 2007

Hello, my name is Betty

I'm searching for information on starting a pain support group and would like to hear from others with their suggestions, experiences with one and the types of group topics and activities that they found most helpful.

I have some of the plans for information and such already worked out.  I'm still working on what types of discussions and or activities that others have had experineces with, what has worked for them and what does not.

Should the group have structure to it or should it be a free discussion.  I've already gotten some ideas for suppling a guest speaker once a month for our group times.  Do other's think that quest speakers from the medical field are a good idea?

I'm just very open and would like to hear from others and see what they think.

thank you for your time and for sharing with me

Betty

How many person here suffer with Fibromyalgia ?????
11/ 3/07 7:40pm
Maybe a near by hospital can give you more info and help you organize your suoort group , that is probably where i would start and maybe even your own doctors ... just fleeting thought ...
11/ 4/07 1:36pm

Thank You AGSerra2

I'll give the hospital a try. Maybe they have a support goup or something similiar that I can talk to the director.

My own doctors are very encouraging in my persuit, but don't act like they have time to help any.

I had considered contacting the Pain Mgt counselors at my pain clinic and talking with them too.

Thank you for the idea's

Hope your days is going well.

Betty

11/ 4/07 2:00pm
Lol .. you are very welcome .. I am laughing at my first response to you and I can see how terrible my spelling has become .. oh well ... lol gotta laugh sometimes .. hope to see you post in the forum .. I should be thanking you , I didn't even know we had a chat room .. lol .. I am just goofy today Tongue
11/ 5/07 2:50am

AGSerra2

You know, I had to laugh at myself too.  I have been here every day for days and never had any idea that there were forums. 

If you scroll down toward the very bottem of this page and look at the column to the right, the one that says Forums 

That's not how I found the forums, but I just stumbled onto the page yesterday, after I've been going over this stuff for an entire week.  LOL

And after yesterdays shock of finding them, I noticed today, that they are at the bottem of everyone of these pages.  LOLGrin

Don't worry too much about your spelling.  Mine's pretty bad too.  I recently was scolded by my son for my spelling getting so bad, he says it's because I use and rely on spell check and it's created a very bad habit, because I type away and don't even think about spelling because I've not seen a line under my misspelled words. Cheesy

I actually think he's right, Roll Eyes but we're not going to tell him that.Wink

I plan to get going in the forum tomorrow over coffee, thanks for the invite

Good night and see you around

Betty

12/10/07 7:50am

Betty,

 

First, I want to say I'm sorry for your loss. I have a best friend who lost a son nearly 2 years ago and the pain just stays so raw. My heart goes out.

 

I assume that is one of your son's on your left? You wouldn't believe what an uncanny resemblence he has to my son, who will be 22 in 2 weeks. It's really amazing...they could be twins.

 

I saw that you subscribed to my blog and wanted to check out your sight, find out what challenges you have. I was diagnosed with Fibromy. incorrectly after my accident by a well-meaning doctor who didn't know $@%# about neurological signs - what to look for. So after my accident I went a year before I finally got an MRI of my brain and spine. Borderlining on malpractice, yes. Even after knowing that on day 3 after the crash I had clear fluid run upward and pooled in the ear facing the ceiling, and also was running out one side of my nose, as I slept. I later found out it was cerebral spinal fluid leakage from brain swelling, tearing the membrane that covers the brain. I was in danger those first few days, but no one knew it until a year later. 

 

You are a strong woman, for sure...daily chronic pain can be enough to deal with but I respect you for reaching out to others and wanting to make necessary changes to help others. 

Sherry 

 

  

12/10/07 8:02pm

Sherry

It's such a pleasure to have you here with us, I hope all is going alright or as good as any of us can expect, in your world today.

I certainly enjoy your words and wish I had a fraction of your talent.

I'm pretty much a thug or toad when it comes to art or even inspirational writing.  I just muddle through with what I have thoughReal Cool

I'm really sorry about your accident, I cannot imagine how difficult it would be if I had someone or some action to blame for all this.

I guess I could blame my son, but I've already been through that emotional rollercoaster a million times and my pastor tells me to let it go.  sometimes we just will never understand the actions of some one we love.

With broken hearts and wounded souls we still keep continuing to get up ever day and take it one at a time.

I'm very, very sorry for your friend and hope she will have an ok christmas this year.  the first couple are the very worst. I finally decided the third year that we were going to change our traditions around here and not follow the same plan that we had with Ryan for years.  Making new memories and rearranging the tradional behaviors has really helped us to enjoy christmas again.  You may want to tell your friend that it does actually help to change things up, so you don't sit there and wait for the person who's missing to take their turn and have the deep pain that feels as a butcher knife go through you, when your met with the empitness and silence at their absence.

New traditions really helped us to move on to new memories

Take Care

Betty

12/10/07 9:09pm

Betty,

 

Thank you so much for your kind words and especially for liking my poetry. I was banged on the head pretty good and before that I was not artistic at all, but I feel the new talent was the blessing that came out of the tragedy. Explain that one to my kids, though when I have to mute the TV everytime they talk because my mind can't concentrate on more than one thing at a time. I'll be looking at them and watching their mouths move, but if there's background noise it doesn't matter how badly I want to hear them. 

 

I will pass the wisdom of your experience along to my friend. It was bad enough he passed, but he was beaten to death in the dead of winter with a tire iron by 3 boys who weren't older than 20. That's the hardest part for her. All she sees are the coroner photos in court (my family were all there with her that day and they still have bad flashbacks). He was my Joey's best friend. He was just a boy who was way younger than his years, heavy set, teased all through school, beaten to near death by thugs many times...he suffered from drug addiction. But we all saw something in him that others could not. He was a kid. A loving kid who would give you the shirt off his back if you needed it. He was big, but never fought back, he'd rather take the beating than hurt someone else. My Joey suffers still because just before he passed they were riding in the car and he said to Joey, "if I was getting beat up and you were there, you wouldn't let anybody hurt me would you?" My son said, "hell no dude. I'd kick their @sses." Two days later he was gone not a mile from our home. Joey has much guilt for not being there that night.  

 

His Mom has great strength, but she also has not really accepted it. She likes to think he's just gone for 3 or 4 days like he used to. She feels him around her often and sometimes I make her cry by something I say that takes her into her grief - a place she's not comfortable being in for good reason. I feel bad, but she always tells me not to. I'm sure you've felt like that before over Ryan too. I cannot imagine the terrible pain you feel each day, but especially on holidays. Changing traditions is a great idea. She lost her husband 2 months before her son. I'm not sure I agree with your pastor to just get over it.   You'll never get over it. I still cannot believe how much your son looks like my son. Its remarkable.

 

I've looked at your site and you have your own talents. I could never organize an online pain support group or one in my area for that matter. You are reaching out and touching lots of people and who knows how far you'll go with it. I'd like to see some action taken to force doctors to learn about the pain medicines they prescribe and particularly how to get people off them SAFELY. It should not be an elective course in med. school.  

 

I too hope you are having the best day you can, given the circumstances. I don't know about you, but for me, sleeping is little to none. Sleep around 11 or 12, awake for the day by 3 to 3:15.  Take care, and I hope to hear from you soon. What state are you in? I'm in Michigan.

 

Sherry 

12/17/07 3:15am

Sherry

I'm sorry that I've not responded for seveal days, I don't know what happened, but I must of missed this topic.

I'm so sorry for your friends son, what a tragedy and loosing her husband a few months before her son.  I'd never of made it through what she has.

Please give her my love and prayers.

Your son must be a handsome guy!Wink

My Matt came home yesteday and I just got through having a wonderful conversation with him about his brother.  We miss him so much, that it is such deep pain that I cannot even describe it.  Matt was pretty much silent about his brohter for the past 3 yrs and now here lately he's been bringing him up alot when he talks with me alone.  It feels really good to have him discuss his feelings with me, as I worry about him too.

 

I hope your doing well and that your pain has been undercontrol.  I actually was able to do a little baking today and made the guys a nice sunday supper.  it felt really wonderful, but the pain has really climbed this evening and I can tell I'll be struggling tomorrow.  My birthday is tomorrow and my husband told me he wanted me to get to bed soon, so I'll be able to go out to dinner with he & Matt tomorrow evening.

I just wanted to check on you and make sure your doing alright.  The holidays can be so busy and we all get caught up in family too.

 

Take care and hope to see you around

Betty

12/17/07 9:31am

Hi Betty, That's okay, I assume people are really busy this time of year. Yes, my son is one handsome devil! I'm happy to hear Matt is now talking to you about his feelings. I cannot imagine what it would be like from his point of view in a loss like that...lots of concentration on the parents but sometimes siblings get unintentionally overlooked by well-meaning others.  I've told my friend what you suggested -changing up the holiday routine. She gets real grouchy with me on the phone sometimes but that's because she feels safe enough to yell at me (who else can she take it out on?), I think. She knows I'm not going anywhere and I let it roll off my back any way. I'm sorry your pain has been so bad, but HAPPY BIRTHDAY any way. I hope you enjoy your dinner with your family. Mine's been a little tough lately too, but a lot has to do with the weather - we just got about 14 inches of snow. Those weather fronts are a killer.  Once in a while my Joey talks to me about things but not too often. Seems like when he does, he really spills it. The first settlement check in my vehicle accident was mailed to my atty a week ago today. Say a little prayer it comes today. No meds, no groceries, no christmas without it. I've been eating advil like tic-tacs. I have a good deal of $ coming but can you believe my family??? My kids (who have given up the last 3 years and the best years) to care for me tell me it's my money, to spend it on my meds and maybe even a surgery that would reduce the pain. The rest of my family (Mother, brother, neices, etc.), after going months without a card, or call to see how I am or if we have food, now call no less than 5-6 times a day each to tell me how hard their lives are and how much it would take to make their lives better. Yep. I actually got dollar figures. My brother: $3,000 would make him happy. My own Mother wants $12,000! (that one hurt) and neices want new cell phones and designer clothes. Through my meditation I've become brutally honest with all around me....learned that if I don't, I end up being the one who sits disturbed while they go on about their business, oblivious. So I warn them first, here comes my new brutally honest side, you can hang up now, or choose to listen. Up to you. Then I let them have it. I'm not disrespectful, just honest...what really put them in the shape their in...that I didn't win the lottery, it's for medical expenses, and that I would have never charged my mother (nor have I in the past) for caring for her when she needed me and she should be ashamed of herself as a mother. She really didn't do much for me as it was, she was usually drunk and falling on the floor, or sleeping off a drunk, while I was having grand Mal seizures in the chair next to her. So my daughter will get some and so will my sons for being there and never waivering. I think I told you one time I was in U of M hospital and was 2 hours past my pain shot. It was 2 am. I called my son, crying. He got in the car and drove the 20 miles to the hospital and was in my room a few minutes later. He pulled a "terms of endearment" on them. He raised hell - I had my shot in the first 5 minutes after his arrival, the charge nurse and patient rights in there. After the shot he scooped me up and carried me out yelling he can take better care of me at home. He's faced off with several in the health industry since my accident. He's just a kid who gets **** done. As soon as he walks in the room I feel like I'm completely safe. I brag too much..he does have his faults, but he sure loves the women in his life.  

 

I hope your birthday is wonderful and pain free. Thank you for writing back.  Take care.

12/17/07 5:40pm

Grateful

Sounds like you really have your hands full at this time of pain and weather he!!.

The holidays are hard on everyone, but I will definately take time to pray you get your check very soon.  NO meds!  EEEKCry

I don't even want to consider how bad this would be with no medication help.

 

Your son sounds like the best man of the house you could have!Wink

I'm really happy you have both your kids with you and that is a wonderful blessing.

 

I've had to step back away from the draining of family issues and have decided to let them figure things out on there own, instead of myself and my husband bailing them out.  It's kind of strange, but I harbor no animosity, but all the times my husband & I helped all my family with $$, support, and unconditional love.  Now that we are the ones having a difficult time, not one of them has even called in about 4 years.  You see we're no longer needed by them,as we cannot take care of them.  I'll see them all on Xmas day and be polite and not really have much to talk to them about, it seems we no longer have much in common.

It's really quite sad, they live in the same town as I do and we see each other once a year.Roll Eyes  I really no longer have the strength to take care of them any longer, even if just emotionally.

 

You take care and I hope all is going to get better soon

Betty

12/18/07 3:02am

Betty, I don't sleep too well at night so this is the reason I'm replying so early. As I'm sure you've already guessed our family situations are very closely related. Me and my kids went a year without more than 3 phone calls from my family. They also live in same town. But like you, I do not harbor resentment or anything else negative toward them. I meditate a lot and it has helped me to look inward for my strength and wow, does it ever work for relieving those things others can do (or not do) to get to a person. I have nothing but peace in my heart....but a good healthy distance from them all.  They're troubles, whining, complaining, rarely gets to me anymore and I know if it starts to, I need to let the voice mail get the phone for a few days. Most of the time my meditation has taught me not only to control my physical pain, but also emotional pain inflicted by those I thought I could trust. Isn't it funny how before something tragic happens to us we think we know who would be there for us...but once it happens, the list is not only much shorter than we thought, but different names completely. I seriously considered moving across the country, but my daughter said, "geez they don't come to visit any way, so just tell them you've moved to Florida and change your number. They'll never know the difference." I found that funny. I call my parents by first name now...not out of disrespect, but a symbol to myself to remain detached and at a safe distance. This way I ensure I hold on to my inner peace. Did you have a good Birthday dinner? Thanks so much for the prayers on the check. Still waiting.... Hoping to get it before Christmas. I've really felt terrible about the kids not getting Christmas the past 3 years. Understandable to the older 2, but hardest for my youngest guy. I hope you had a wonderful time with your husband and son!

 

Thanks for writing back and for the prayers.  

 

 

12/20/07 2:09am

Grateful, Your a wonderful person and a saint in your approach and thoughts of life.  You just seem like someone I'd love to sit with for hours and have some tea and just visit.

You've mentioned your meditation before, and if you don't mind, may I ask what types of meditations you do?

I use the mysteries of the rosary and pray my rosary daily, it help me a great deal to face the pain, anguish and grief of a mothers loss of a son.  Our Lady was for the longest time the only woman I knew that understood what it felt to loose a precious son, so thats when I began a relationship with Mary.

She's helped me to carry on and been my model of a christian mother, I ask her to pray for me and my family.  Sometimes I get so caught up in the pain physically and mentally and all the other problems of life taht I'm not even sure what I should pray for.  So I ask her to pray for me for what ever she thinks I should be praying for.

 

I really hope that you and your family can have some good time together this xmas.

I am having a nice time with my matthew, I told him this evening that he looks like your son too.  so we can both agree, they must be handome young men!  LOl

 

Your very blessed to have three children, I just loved my sons with all my heart, they are and Matt still is my whole reason for living and being.  I wish we could of had more children, but I guess God new what he was doing and knew I was going to become sick, so I did not have any small children to take care of now.  Sometimes I stuggle caring for our dogs, so I'm sure I'd really have trouble caring for a child.

 

Praying for your $$ to come in, take care of yourself and thankyou for your words in your writings, they are wonderful and Matt read a few of your sharpost tonight too.

 

Talk to you later'

Betty

12/29/07 11:13am

Hi betty, I'm so sorry it took me so long to write back - or to even check my site. I hope you understand the last couple of weeks have been nothing but stressful, exhausting and never ending for me. Most of the shopping was left to me and because the $ didn't come until 12/22 I was only left with a few days to do what I knew would take 12-14 hour days. Thank God for the Mall in this area with the rental motorized scooters! Still, my body hurts terrible and I'm glad it's about over (the Holidays', that is). I thought of you over Christmas eve and day, wondering if you were doing okay. I too feel like we could sit at lunch and talk until sunset over our shared experiences. We do have so much in common and I do enjoy hearing from you and writing to you. The kids got me lots of art supplies for Christmas so I'm hoping to really begin doing some things I feel Mary is pushing me to do....help others by my words, my drawings and my intuition. I love to talk to others' who acknowledge how terribly important She was/is in our lives - intervening on our behalf to her Son in his anger over the way we treat each other, etc. She is the best at comforting Mothers and Children in their grief, whatever type the grief may be and I call on her daily. I found a beautiful hand blown glass sculputure of her at the mall and the reason I bought it was because it was the identical image of the picture I drew from memory of my Blessed visit with her. My youngest son has his doubts as to my intuitive talents, but since i bought the sculpture, he was sitting twice at the computer by himself in the room and each time I got frustrated or felt over-committed, over-used by those around me (I was feeling resentment)...Cody came to the kitchen and said Mary just tipped over backwards and no one was anywhere near her. Twice. On three other occassions when I ask her if I'm doing what's best for me I can leave the room and when I return she's no longer facing the room, she's facing the right. There are no vibrations, nothing to move it on it's own and it's very heavy. I take those turns as not her turning her back on me but telling me I'm going the wrong way. so I correct my thinking, my actions. My pain medicines have ranged from Darvon to Morphine and fentanyl. However, I didn't like being "dependent" on a medication, so I asked to be taken off all pain medications until they can find one that works without permanently messing up your pain receptors. I do take lots of Neurontin, muscle relaxers for really bad days and tons of Advil (which I'm not even sure works anymore.) As is with you, the real pain relief came when I began making time for myself. I meditate in the morning and I go to very deep trances. While in the trances I am completely pain free and can remain pain free for several hours after. I also do some basic Yoga and have taken charge of my own PT in my apt. exercise room. Just strengthing certain muscles have eased a lot of pain. It's the getting there that's the hard part.  My Joey got his Yamaha 250 dirt bike he's wanted as a very small payment for him giving up his life, sex life, relationships, etc., to be here for me. I wanted to give him something to look forward to and he used to race and do many fancy (eye-covering) jumps. Last night was his first time on it and I was 80 miles RT away. I got a call that he crashed on the last lap and they were brining him home with a "sprained ankle". Well, being a Mom, when he got here and I saw them carrying him across the yard with his foot dangling, I knew it was not only broke, but in several places. He refuses to go to the ER, MX'ers "suck it up" as he calls it. But I will insist today that he goes because I think one break is compound - the bone didn't break the skin but is sticking out the side of his foot. It hurts me to see him in pain, but it hurts more to know that he only rode once and will have to put it up for several weeks. He gets so depressed being laid up for longer than a day or two.  We did have a wonderful Christmas and everyone got what they wanted. Carly is still moving to LA in 6 days, ticket bought, lease signed, rent paid. I cry thinking about it but I want to be strong because I know it's the best thing for her to be on her own and act like a 24 year old for a change. We went so long without food and necessities, we eat out a lot since the money came and we spend like drunken sailors, but after 3 years what can anyone expect? The one thing (other than my new furniture) I am going to do for myself is take a Mexican Rivera Cruise on a ship for psychics and mediums learning for 8 days under people like Sylvia Browne and Lisa Williams. It was the path Mary told me to follow  - to study under a master. It's costly, but I cannot pass it up. I'll be on my own, so hopefully the cruise staff will assist me in getting around. It's not till May or something anyway. My second suit (Pain and suffering) will arbitrate in March.....maybe. That's for much more. Most of this $ has to be paid to providers, so I didn't really get very much for myself, comparitively. I am at peace, as I know that if Mary wants me to go, she will make it happen. I have total trust.  I received a visit from my dear friend's son the day after Christmas. He was so excited to tell me what she got, what happened, etc. I wrote it all out in one of my dozens of already filled notebooks (I do a lot of psychic writing). Then I called her and told her not only everything she got, but who was there, that they played a trick on her to make her think she didn't get what she wanted and also how alone she felt after everyone left. I told her that he hugged her while sitting in her chair once alone and that he knew she felt it and she told me that she did feel arms around her shoulders at that time. He just wanted her to know he was there, spent the whole day there and saw everything that happened. Proof to her of eternal life. Some need solid proof, others just know. She happens to need the proof. I've been asked to submit my poetry to a national contest. They sought me out which really felt good. I still have to pear down one or two of them by quite a few lines, but I'm not really wanting to give up any parts of them. I'm honored, it's a huge grand prize and several 2nd, 3rd, etc. plus national  exposure to some of the best publishers. WaHoo!!!  I was so glad to hear back from you. Glad your birthday was nice, and I know we agree on how handsome our sons are!!! i just wish mine would see it as much as I do. you're a special person and I can tell you're a wonderful Mother. A dog, I couldn't care for either, but I do have a wonder cat who cares for himself, except he requires a 4 piece chicken nugget from McD's every time we go. As for Grandchildren, I think when the time is right for them to have children, I'll figure out some way to baby sit and spoil them terrible! You will too. They are making strides in Fibromy. and I believe in just a few short years they'll be able to address that pain with the right meds from research. Have you thought about getting into a research program? I know it's risky, I used to work in Research at St. Joe's Mercy Health Syst. in Ann Arbor. But boy, lots of people are on the cutting edge of the top medications and have access free of charge to the top doctors in that field. Just a thought....Thank you my friend, for writing, I hope we keep in close touch. I can't remember what state you're in, but I'm in Michigan. How far away are we?  Friends, Sherry
 

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By Betty Boop Too— Last Modified: 09/04/10, First Published: 11/03/07