Fibromyalgia pain: Let's connect

Posted by clownscrytoo @clownscrytoo, Oct 22, 2016

Is there anyone here that suffers from fibro? I had the 'tender spot test' several years ago and I had 17 out of the 18. I try my hardest to get through the pain with my 4 hydrocodone/acetaminaphine pills a day, Tiger Balm rubbed into areas that are the worst, light exercises, and distracting myself with hobbies or chores, etc; but there are many occasions where none of that helps and I spend most of the day holding down the couch, getting up about 30-45 minutes after that, walking/standing around the house for 15-20 minutes, or sitting for about 15-30 min. I do not drive and my husband works 6 days a week, overtime almost every day, so I'm alone a lot. my wonderful husband is very supportive and I am very grateful for that, but my only other friends are online, out of state, and I will probably never even get to meet them. when extreme pain takes over, my depression takes over and it is so difficult to find hope. does anyone have tips for fibro, whether diet or over-the-counter meds (I've tried them all, I think), or anything, besides hobbies and such? I've tried every over-the-counter med, and the Tiger Balm does cover some of what the pain pill doesn't help, but I'm hoping one of our members might have some knowledge that could help. I'd really appreciate it.
hugz,
Clownscrytoo

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

@oregongirl

I would love to come to Mayo. However I am seeing my doctors at the University of Texas. I am sure they are the best. They know how I feel. Please let me know if you received my other two emails. My finger must be working against me today. I either deleted my message to you or it send partial answer.

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The reason why Fibro is so difficult to understand is because it is not a popular condition that is talked about. As a matter of fact until Lady Gaga mentioned it, I can only remember one time it was mentioned on a TV medical show.
Fibro is still a condition that many docs don't believe in. The old, it's in your head thing. As a result, not much has been researched or has changed.
Treatment has not changed since I was diagnosed over 30 years ago......PT, exercise, chiropractor, therapeutic massage, meds to get you into a deep sleep (the healing depth), rest when you are inflamed. Years ago, they didn't give me pain meds. Now, with what is going on, who knows???
We NEED more research, new meds and a way to diagnose Fibro other than by the process of elimination.

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@oregongirl

I would love to come to Mayo. However I am seeing my doctors at the University of Texas. I am sure they are the best. They know how I feel. Please let me know if you received my other two emails. My finger must be working against me today. I either deleted my message to you or it send partial answer.

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@oregongirl I have been known to ask someone if your legs were broke could you walk your pain off? I do the best I can and stay from people that see me as lazy. Their issue and one I no longer deal with. At 65 I realized I had thrown my entire life a way trying to please others. A waste to be sure. I also have OA, DDD in my neck and lumbar, 2 bad knees (theory here is go to the gym to build up muscle and my knees won't hurt) and I have not yet found a way to work on quads that does not put my lower back into spasms. The no pain no gain thing is overrated-my opinion. PT a while back for my knee had me in a fibro flare and I did my best trying to be compliant which resulted in being down again. As far as asking someone if they have ever had fibro-I would be seen as feeling sorry for myself. I do my best and this is all I can do. Just because a doctor tells me to do something does not mean I can follow through. Lazy has never been the type of person I am. My pain is due to depression I am told. Never has been a problem in the past and my depression is worse as there is some living I would like to do.

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@parus

All I can say is I hope others have better experiences in getting help than I have. I know I am not assertive enough. I live in an area that is archaic in many ways. Moving again is not an option as I do not have another move left in me and where would I go? Anyone with a mental health history is labeled and their pain is not real...esp. Fibromyalgia. Doomed and damned by ignorance.

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@robbinr Everyone is suspect. It is difficult for those without pain to understand the ones that have pain. Being repetitive here-the honest pain for the crimes of criminals.

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@parus

All I can say is I hope others have better experiences in getting help than I have. I know I am not assertive enough. I live in an area that is archaic in many ways. Moving again is not an option as I do not have another move left in me and where would I go? Anyone with a mental health history is labeled and their pain is not real...esp. Fibromyalgia. Doomed and damned by ignorance.

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@oregongirl I feel the same about the grand kids. I do have a lot of love and they know thus. Saw them on Sunday and I do not talk about my pain with my son and his family. I never thought I would see 66 and had I continued listening to others who believed doctors were right I may not be. Some of the meds were poison to me, caused bone damage,cataracts in less than a year, constant shaking and drooling. I went from strong, energetic, high achiever, a job I loved to what I am now. I still am and this is what matters to me.

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@parus

Anyone else being accused of faking pain that has no history of such prior to fibro. Any trips to a doctor I do alone lest some else's good intentions hinder the visit. Every thing is blamed on depression.

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lioness i learned to say no also At first people kept thinking I was just depressed or lazy I guess. But from the time I get up in the morning to take the dogs out, I fly back to bed as I cannot tolerate the pain I used to love to shop. I can;t any longer,

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@parus

All I can say is I hope others have better experiences in getting help than I have. I know I am not assertive enough. I live in an area that is archaic in many ways. Moving again is not an option as I do not have another move left in me and where would I go? Anyone with a mental health history is labeled and their pain is not real...esp. Fibromyalgia. Doomed and damned by ignorance.

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Its very normal to require a urine test. Even my PRIMARY did this recent;y. Doc just wants to know that the only drugs you have in your system is the drug he authorized for you. The pills don't do much good unless you take them regularily and before the pain begins. That is what I thought. You might ask him at next visit.

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@oregongirl

I would love to come to Mayo. However I am seeing my doctors at the University of Texas. I am sure they are the best. They know how I feel. Please let me know if you received my other two emails. My finger must be working against me today. I either deleted my message to you or it send partial answer.

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Parus, I totally feel like I wrote your statement. My 32 year old active DIL is fleeting around like she is has wings. Hey I remember when I was like that. Both my daughters go to the gym EVERY day. When I was working and raising kids, I never had a gym time. It is amazing how we put our family first and now they are doing well an we are falling apart. I don't remember people a generation older than us ever having the problems e do. It has to have been brought on by our food, water or doctors themselves. I refuse to listen to anyone again judging me. My kids finally came around I was going to move to an Independent living facility, but the money involved is ridiculous Most for a studio start at 2200.00 a month and in some cases food is extra as well as housekeeping etc. WOW, did I plan wrongly. Today my kids KNOW they must have at lease a million each to even be considered for that type of care when they are my age. PARUS, you live your life. Don't be afraid to ask for help and only listen to those things that you wish to listen to. If we continue to not get drugs to help us, we will have to find some other way to find comfort. This is going to be a crisis in America with the older generation. No doubt

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@parus

All I can say is I hope others have better experiences in getting help than I have. I know I am not assertive enough. I live in an area that is archaic in many ways. Moving again is not an option as I do not have another move left in me and where would I go? Anyone with a mental health history is labeled and their pain is not real...esp. Fibromyalgia. Doomed and damned by ignorance.

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Yes, I am afraid of what the drugs I am receiving are not doing more damage to me. They are poison and are used for those with cancer. I have RA. I give myself a short once a week and go to Infusion when the doctor orders it.

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@oregongirl

I would love to come to Mayo. However I am seeing my doctors at the University of Texas. I am sure they are the best. They know how I feel. Please let me know if you received my other two emails. My finger must be working against me today. I either deleted my message to you or it send partial answer.

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@oregongirl, @parus I hear you both so we'll. Doing all the things you do, wish to give my son, and then my grandchildren a real grandmother. I am 70, my husband is 79 1/2. He has been told he has to retire from his 3 day a week retail job. We will have to cash out of our mobile home and move to a senior facility in a less expensive county than Silicon Valley. I desperately need some funds for housekeeping help as had to let my monthly housekeeper go. Can,t even think of beginning to pack up and find senior housing in another county or state. Never thought I,d spend my last years like this. I praise and trust God to help us find a way to keep going, refuse to "stay" depressed. After beautiful weather, we are now in a cold rainy month of March, sick with virus and so it's hard to feel productive to pack up and go...go where? One day at a time. The Lord is my strength and my shield.
And ladies, you a are blessing to me to know you are out there; sharing and caring.♥
Victorious69.

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