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.
Hello all. I used to be very active. Tennis, bowling league, hunting, fishing, bicycling, baseball, truck pulls, demolition derbies, raised my own food for many years, Beachbody Coach (still am because I am hoping to become active in it again one day). Just a couple years ago, I was doing workout programs like P90X and Body Beast. I looked and felt great. I was very healthy and not on any medications, not even ADD meds. I also had lots of energy. I raised 3 active childrent of my own (one has a form of austism with adhd and ocd, he kept my mind sharp and my legs moving) and 3 active step children. Then around August 2014, I started feeling really tired and sleeping a lot. Along with that came pain. Excruciating pain everywhere, muscle spasms (one was so bad it was mistaken for a kidney stone and lasted almost a month), numbess in legs, feet, and back. New tingling in back and legs ( I have had tingling in the part of hip bone above the joint my entire life but never anywhere else in my body and it was just an annoyance before). After lots of negative blood tests, the diagnosis was fibro. I had to look it up because I didn't know what it was. The flare lasted 6 months. That was a couple years ago. Now I am on medical leave and it is boring but I could not continue to do my job with pain so bad I would cry in front of people. I have fibro, mps, neuropathy, osteoarthritis (spine, hips, pelvic bone, knees and fingers but only bad enough to cause pain in fingers), runner's knee in both knees, and bilateral plantar fasciitis. The latter two are the most recent and caused by my job, by walking and standing on concrete for 10 hours a day. I have been tried on a lot of medications over the last couple years but none of them helped, until this last April when I started on Lyrica and metaxalonne. Too bad my relief was to only last 3 months. I still take Lyrica and metaxalonne but now I also take topiramate, ibuprofen, and concerta. I was diagnosed ADD years ago, so the doc put me back on the meds to counteract the knockout effect of the topiramate and metaxalonne (I can now take during day if needed). Too bad all the meds don't work. I wish future doctor appointments weren't so far off. At least I can focus on reading a book now (thanks to concerta) since I can't do much else. I was walking but was told to stop because of the runner's knee and plantar fasciitis. My gym closed the pool for 2 weeks so I have to wait for swimming, that is the only time I feel absolutely no pain, numbness, or tingling. It's even too painful to sit in a boat for a few hours to fish, even on muscle relaxers. I think I need a different line of work but not sure what. I am not ready for my conditions to determine if I am employable or not. I was just informed today that my employer (they can ask for a list of meds for someone on medical leave, if you have signed the form for docs to share info) will extend my medical leave and short term disability past October if I am still on topiramate and metaxalonne. It seems as though the flares are getting longer and more intense and the time between flares is getting shorter.
What do you do that works for you? Medications? Diet? Supplements? Exercise? Anything that might help others with same or similar conditions.
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Years ago, I won a mirrored armoire from my job. It's in my bedroom but I rarely stand in front of it. Yesterday, I had to have a dexascan done so I had to change into a gown. There was a full length mirror in the changing room. I'm aware that I gained 5 to 7 pounds over the last year from cheating on Keto but I didn't know what it looked like. It was a reality check.
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second, we manage by trial and error. Some get greta results from meds, others diet, others (fill in), some by a combo, and it can change over time, with circumstances. So keep trying! i had almost no fibro symptoms for eight years, and while we never did know how I got there, it gives me hope I can find the right "formula" for my new circumstances.
Our go to book here is Fibro for Dummies. Amazing resource for us, our friends, and sometimes our doctors ... grrr.... A lot of us find it comforting to have if only to prove we are not making things up. (I was dxd in 1995, when most docs said it was menoapusal women disease. My doc, a male, had fibro secondary to another issue, and he did not thi k it was psychiatric at all.) CDC and WHO recognize it as neuromuscular...
So think of it this way. your new baseline normal? is equivalent to ypur old "did a triathlon without enough training"... In other words, you start where a marathon runner ends, in terms of body stress and pain and likelihood to be injured.
I rely on avoidong processed foods because I never eat so,ething my greatgrandma would not recognize, no caffeine (helps with anxiety and sleep), lots of gentle exercise (yoga, swim, are popular with us), stress relief, venting here, and making sure I have good docs . Not easy sometimes, but a doc who still lokks for why I have fibro, 20 years after my dx, is a doc I like having. I am less likely to give up if my docs are still open to the idea we can find ways to improve my quality of life.
I am so sorry you got this dx, but glad to meet you, and feel free to browse daily checkins. They are a loooong tradition on this board, so we can daily touch base, good or bad or indifferent, and some of us have met each other in real life too. (I mt the lovely PeaceN2you, who is rarely around now, but that is one example.) And we can be goofy, and complain, and feel free to say those things the nonFibro folks do not always understand.
cheers,
Leo
Healing to us all....
If there's one thing that took me years to learn, and at great cost to my health, is that I can't muscle my fibromyalgia into compliance. Claims that exercise helps always has me gravitating back to over-exercising, thinking I'll somehow start doing loads better if only I'm stronger, more in shape. It's very frustrating when that doesn't turn out to be true.
I think Leo touches on an important point: grieving. I could be misjudging, but it sounds to me, like what happened with me, that you're simply trying to deny the notion that fibromyalgia might end up dictating certain choices in your life.
If you think of a "healthy" person's life like a river, fibromyalgia is like having a dam over that river. Instead of flowing without care, a finite amount of energy will trickle through at any given time. If you try to force things, having a busy, busy life that causes a tsunami of water to come pouring towards that dam, your dam will be horribly damaged and all the things that you are trying to supply with water will end up drowned.
To try to slam through the dam will just harm all involved, but a building project; controlled widening of the opening to allow more water, that would help. In other words: restructuring life choices so that the demands are more on par with what you're capable of. Then trying to increase your activities in thought out manners.
I'm sorry if it's a clunky metaphor, and I know painfully, painfully well that you likely don't want to think about what I'm telling you. I certainly didn't for quite a while.
If you try to force through all the things you've got going on in your life, you run the risk of losing it all - at least for a long time as you battle to get it back. If you ignore the fact that your fibro is getting worse with the way you're currently living, that pain will not stop growing. Your dam will continue to be damaged. If and when you then decide to take the time to fix yourself, you find that it's a monstrously big job.
Preventing damage is better than trying to fix it while your life floods around you. I'm very sorry if I'm vague or unclear, I'm trying through the brain fog. :) Please let me know if I'm not making any sense at all.
I had to accept I can't work full-time. I attempt to keep up very regular exercise while respecting the ebb and flow of my fibro. Good hydration and healthy eating has me feeling a bit better, though I admittedly cheat with processed food pretty much every day. I had nine months of twice-weekly physical therapy, mostly needed because after years of ignoring pain, I needed to learn about my own body again. I am all but incapable of recognizing health patterns or symptoms in myself. For example, it took me over a year to realize I'm showing consistent IBS signs, because I accept pain with no warning light popping on saying "You're having a lot of abdominal agony and stool problems you never had before." Learning to disregard your body fully is dangerous. I also had two bouts of cognitive behavioural therapy, to help me deal with the more mental aspects of pain and accepting such unwanted life changes.
Welcome again and I hope this place will be of use to you! Hang in there.