Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
This is my first time, so I am not sure if I am doing this right or what to expect but here it goes.. I have a Drs. apt. today with my pcp who has been the primary person "managing" my fibro for 7-8 years. Last year I took myself off my Savella and Amitriptyline to clear my system, the cost and because I didn't feel it was working any longer. I am currently only taking a pain med. and in a flare. Not only am I in a flare, but I feel a bit of depression (feeling of hopelessness) creeping in as well, which I have not had before and my anxiety and ADD are at an all-time high. Family issues are the cause, but I cannot adequately deal with those because of the pain and exhaustion. I don't feel like my Doctor listens to me when I tell him how I am feeling, and I always feel like he thinks I am drug seeking. I am a professional woman, I work 40+ hours a week and a one month script lasts me months normally, currently in a flare so that will not be the case this month, but I have never felt that my symptoms are appropriately managed nor do I think the fibro is the only cause of my pain. I am hypothyroid, positive ana titer and bulging discs in my cervical and l5s1 spine. Sometimes I feel like it takes ever ounce of my being just to hold my body upright all day long and by the time I get home from work I am DONE. I do try to get to the gym at least 3-5 days a week but honestly the past month I have not been once. I cannot muster up the strength or energy. I am dropping everything and the tops of my arms feel weak and heavy. Had a burning sensation last time I saw him in my arms but he blew it off as nothing, gave my hydrocortisone cream for eczema. The burning was under the skin..whatever.... Anyway, my question is this, is it unreasonable to ask to be worked up by a specialist or a neurologist? I have not had a CT scan in over 5 years, is it unreasonable for me to ask for one? I just cannot shake the feeling that I have something else going on with me besides the fibro. My doctor looks at me like I am crazy and sometimes I question whether he is right. Last time I met with him, I asked him for alternative methods to deal with the pain and he told me he practices modern medicine and if I want to take myself off my meds. I have to deal with the pain... Just totally frustrated and not sure where to go from here. Any suggestions from fellow sufferers are welcome and encouraged.
I have tried tens
acupuncture
PT
and
chiropractic care
I have tried tens
acupuncture
PT
and
chiropractic care
The burning sensation in your arms after exercise may be from "too much" weight-lifting or maybe it could be more serious to do with your discs---I don't know about that.
If you're having stress that isn't going away anytime soon, I would suggest seeing a low-fee counselor.
What meds have you tried for pain and sleep?(For instance, what I've found that helps me on a daily basis is a combo of an opioid with a muscle relaxant--baclofen, in my case and I have to take trazodone every night for sleep.)
Are you over-scheduled---a lot of people with fibro have to cut back on their activity level to lessen pain and fatigue (see bruce campbell's self-help course for chronic fatigue and fibromyalgia course)
There are some cases of Chiari malformation which is in the cervical spine, I think, and cure the fibro that it causes. Google that and see if it applies to you.
I have a very nice doc who goes along with anything I want to try. I think it's up to you to research what might help you and bring in a reputable print-out to your doc and see if she/he will allow a trial of it.
Give you a feeling of control over your illness. If this doesn't work, ask a support group in your area (for fibro) if they have names of docs with a good bedside manner, or aren't irritable.
Ask your doc to refer you to an endocrinologist if he can't think of anything to do with your thyroid situation.
Certainly your doc should refer you to a spine doc to review your situation which may have worsened.
High ANA levels do not mean much but did you have a battery of tests when you diagnosed with fibro to rule out lupus and rheumatoid arthritis, etc. These tests: ESR (sed rate), Rheumatoid factor (I think), etc.etc. etc. Ask your doc if you were fully worked up for auto-immune diseases before your diagnosis with fibro.
I hope I answered everything. Good luck today!
If anyone has any experience with this drug I would appreciate feedback. I am worried about gaining weight as my weight seems to be on an upward trend even though I try to eat well and exercise.
Shakota6, thanks for sharing Bruce Campbell's self help course. I just reviewed it and was very informative.
There have seen a couple of Docs that are a hoot now that I look back but they were not funny back In the early years of my fibro journey. One saw me one time for about 10 minutes. She handed me a printout of a story about another doctor and his whole family who all had fibro and were doing quite well with very minimal treatments. And she told me "Just decide to feel better and go back to work." Did she really think I hadn't tried that? Just about 6 times is all. I didn't say anything but I thought why don't you just decide to be better looking and thinner. I know not nice but the early years were the worst for me.
Later on I happened to move and needed a new doc in town taking my insurance. I set up an appointment with the only doctor who was taking on new patients. The first and only thing he said to me was "I don't believe in fibromyalgia." I said "Well then you won't be able to help me but thank you for your time." I shook his hand and left. He didn't believe lol.
Somehow one of the other docs heard about it and made an exception to take me on. He is wonderful and works with me like he knows I know more about fibro than he does. I still give him much respect. He worked hard for many years to learn more about medicine in general. I always ask him before I make any changes with my meds. He has never disagreed with anything I have wanted to try . But I still think he appreciates the props I give him. It makes working as a team really wonderful. Don't give up, the doc you need is out there just keep looking.
The turning point doc for me was a rheumatologist who finally diagnosed my fibro. Thank God it had a name and it was not all in my head. That gave me a starting point.
I think we all deal with the drug seeking feelings. I had to let it go and learned to be my own advocate. The burning sensation for me felt like a very bad sunburn and everyone,it seemed, to slap me on the back.
The depression is quite prevalent. After all we lost the life we had and had no idea what laid ahead. It was the grieving process for me and I still go through it from time to time. Be honest with your doc and you can probably find something to help.
Ask for the referrals you want one or two at a time. Rheumay first and neurologist next would be my choice. But you know you much better than anyone else. Stand up for yourself kindly.
Sheesh I started talking and forgot to stop. Hang in there there are lots of us having wonderful lives in spite of our pain. We just have to learn to accept the fact that so far we can't change it. So adapting to the situation is much easier said than done. But sometimes reality bites.
Try to pace yourself and carve out alone and rest time as much as you can.
Warm soft hugs 4 U