WHAT’S YOUR TOP FIBROMYALGIA QUESTION?
I had a strange thought the other day. I know that those with fibromyalgia and other overlapping conditions are “my tribe,” but … when it comes to the frustrations of healing from fibromyalgia, could I be out of the loop?
You see, I’ve been well for many years now – almost a decade – and maybe my memory is fading when it comes to the struggles I had to overcome chronic illness. I still have fibromyalgia, mind you. I’m subject to the familiar joint/muscle pain, digestive disturbances, cognitive dysfunction, etc. that comes with a syndrome such as fibromyalgia. I just don’t experience these symptoms every day. I also experience them to a lesser degree and oftentimes forget about them entirely. Of course, that type of forgetfulness is a good thing!
So … the other day I wondered about the hurdles I’d faced as I tried to get well. Are they the same for those dealing with fibromyalgia today?
In many ways, finding a diagnosis was the hardest part. It took me about 15 years (and, I had to figure it out myself). I suspect that while some patients may still struggle, at least most doctors are aware of the condition these days.
Here’s what I considered to be my burning questions when I was newly diagnosed. These are the things that no one seemed to be able to answer. I’ve listed them in no particular order.
1 – I see so much conflicting info! Who has the “real scoop” and how do I know who to trust?
2 – I know nutrition is important, but where do I start? It’s all so confusing!
3 – How can I make fitness work when I can’t even stand without a cane?
4 – How can I ever get well without a good night’s sleep and how do I “make” myself sleep?
5 – How can I get my family to understand what I’m dealing with?
6 – How can I continue to work and support my family?
7 – How come I feel “all jacked up” yet I have NO energy?
8 – What can I do about this horrific chest pain (or knee pain, or neck pain, etc.)?
9 – What can I do about my all over pain and joint/muscle pain?
10 – What do I say to people who tell me I look great when I feel like the walking dead?
11 – Does fibromyalgia (and/or other chronic illness) just keep getting worse?
12 – Why do some treatments work for others but not for me?
13 – How could wrist/knee pain, toothaches, headaches, IBS, and fibrofog all be symptoms of one condition? Am I missing something? Is there something else wrong with me?
14 – Is fibromyalgia a stepping stone to a “worse” disease?
15 – Is there such thing as a cure?
15 – I can’t stop stress, so how can I address that problem?
16 – If fibromyalgia isn’t an autoimmune condition, then why are they always talked about together? What’s the deal?
These questions represent most of the concerns that twirled around in my head as I first sought answers. I felt like a walking hurricane of worry (which made my symptoms worse, by the way). These were the bulk of my worries.
What do you think? Am I now out of the loop?
Are these your worries, too? Are these the same questions that newly diagnosed patients ask today? Let me know what YOUR top concern is! Is it #5, # 2, or #4? Or is your top concern not even listed above? Let me know!
I look forward to addressing these questions in the summer months ahead. Feel free to leave comments and I’ll incorporate YOUR questions into my future posts!
i’m glad to hear that the ‘wonder’ drug lyrica is not such a wonder to others also. i have degenerative disc disease and osteoarthritis hip and knees and am 41 and already live on ultram for this. for the last 10 months i have had rib pain which i urged tests and found i don’t have ie bone cancer etc but yet my primary doc just says maybe its fibromyalgia. my doctor (am looking for a new one) was no help to me and last visit blew me off big time; first tried me on savella which sent me to er with very hi blood pressure and heart jumping and cymbalta helped my joint pain some but thats all; she sent me to a new pain mgmt doc and my hopes were shot down and am hoping to get into an established pain mgmt doc now. the new doc started me on lyrica which helped me sleep and helped my pain at first (but mind you on 150mg twice a day still had pain)then the dizziness and extreme forgetfulness and zombie world i lived in was too crazy and still had pain! i have a tens unit but it can only cover so much of me. the useless new pain mgmt doc proceeded to increase my dose ect yet doesn’t seem to be able to get refills called in so i have went thru lyrica withdrawal twice. after a week of being off it now i am still having nausea and feeling like i am starting to get my brain back; that can’t be good for a med to do this to someone. i have pushed my primary doc into a rheum appt referral and started swimming this week which seems to help so far and waiting on appt with the established pain mgt doc who i have heard good things about. thanks for listening and confirming my concerns etc.
I do hear ya! What would you say is your TOP Fibromyalgia question?
Hi I used to be a semi pro power lifter… I am a go go go person.. TYPE A all the way….. I first injured my back in 1989… Then in 1995.. became ill and they did not know what was wrong. My back hurt everything hurt I had leg cramps etc… I had not worked out since my original injury until After I was diagnosed with Fibromyalgia in 1996. In 1998.. being sick of being sick and tired.. I went to a class that included a curcuit weight training class along with it. We worked out 3 days a week.. They gave me the okay to work as slowly as I needed since my back was messed up… I had arthritis in my feet knees hips and spine and bone spurs in both shoulders from the power lifting…. in 2002.. I went back to work as a result of this class.. And I had never known anything but no pain no gain.. Until this coach came along. I also started swimming which I use the water for my resistance training as well. End of 2002.. I fell off my truck destroying my back and left lung and fracturing my left foot. I started back to the pool to work out slowly… and then moved. I was doing well. Then when I moved to seattle I put myself on a regimine… and worked out every other day in the pool doing resistance training. I worked up slowly as to not cause my self any pain. Some stiffness ensued.. But I did well. I have not worked in about a year… But have been training my puppy as he has grown. I mow the lawn.. I ive my life.. I have my days when the fibro kicks me in the teeth. But just lay down for a while.. After a work out it is my habit to eat something lite that will restore the sugars potassium etc…. and lay down for about 2 or 3 hours.. So on my work out days.. I do almost nothing else.. I have had people say WELL it cannot be fibro.. But the doctors and neurologists all say it is fibro. Since my last accident I was at my best in the pool doing 1 hour long stretches of work outs.. and then the whirl pool. I use supplements to help me out as well as lyrica. It is a dream drug for people like me who’s nerves sit on the top of my skin. I go through all the same fibro episodes other people do.. But not as much as I used to. I was asked to start a fibro class at one YMCA… Because many of them wound up being just another older person raise your arms kick your feet out session.. I told them if they wanted me to do that I would ABSOLUTELY REQUIRE the first class to be an orientation that would allow me to talk to them about their disease, excercise, and moving forward. I am a pretty dynamic woman when I get going.. She said it would be great to have me. But I backed out because I was not personally ready.. I would love to do it now … But am not physically read.. I am about to get ready.. lol… SO I would love to do something like this so others with this syndrome can find out they dont have to live hermits. BELIEVE ME I understand all the pain involved and mental and physical issues that come with it. I guess my question after all of this.. Is Why cannot people see beyond the Doctor office and the DVDs that say.. NEVER DO THIS OR THIS… Do they need someone to show them how to move on. WHY do doctors insist on telling a 350 pound woman not to walk or to loose weight but she cannot do it with out her moving.. HOW MANY OF these people truly have fibromyalgia.. HOW many just are too big to move.. THIS coming from a woman that was 450 pounds and is now 340.. I went up some but was at 316. I lost 130 pounds.. It baffels me to see doctors telling people not to exercise any more than a half hour a day. Can you help me understand why more men and women cannot learn to have a schedule considering many do not work… to do something like what I can teach them so their lives can be so much better.. NOT only for them but their families as well. I have never been a coach.. or a teacher.. I no longer work.. HOW EVER I am back to the gym and pool and am working on going back to work. There is not just one question. If you feel the need to write to me.. Please feel free. I sure would love to see others build their lives back up. Thanks. Jaxdia
Jaxdia — great questions! I think the bigger problem that relates to your concerns are these. These two “truths” are what we’re told to believe:
1) Doctors have ALL of the answers
2) We, as patients have NONE of the answers.
We live in an “all or nothing” society. Learning to accept that we have an intrinsic understanding of what our bodies need can bring us to better health – and at a faster rate – than anyone else could do for us. It sounds like you have this part of the equation figured out and thanks so much for sharing!
My daughter has always been a go-getter, very active and spunky. She played sports and after graduating highschoolin 2008, she was a wildland firefighter to support her schooling. She was in an accident the summer of 2010 and also got very sick with mono the following spring, of which she never fully recovered. After a year and a half of testing, one exploratory surgery, the doctors have determined she has fibromyalgia. She and her doctor are trying to find what medication works best to help alleviate her pain and fatigue. She is overwhelmed with where to start to try to regroup her life and begin dealing with this. She had a doctor’s appointment yesterday and when she came home, she was so frustrated to not have any answers on how to help herself. She and I both, are fix-it people. It is so hard to feel helpless. Where do you even start?
We had her come home this spring to just focus on getting better before her pending wedding in September, I think we all thought by then we would have a better grasp on this whole thing. Now I think we just got the grasp on the reality that it isn’t a quick fix.
We thought maybe certain foods would possibly be contributing to her symptoms, but have not seen evidence of such. She has tried to be consistant in her schedule, but has difficulty falling asleep and also staying asleep. Any and all suggestions would be appreciated!
Thank you, Heather
Heather — I appreciate you commenting and giving such great information. As you mentioned, healing from fibromyalgia is definitely no quick fix, but I assure you that feeling better is possible. Would you please email me from my website (www.RebuildingWellness.com) so we can discuss this further? I look forward to connecting with you!