Fibromyalgia

[Meg.Limbach]

My cardiologist mentioned Fibromyalgia, but said I needed to have that diagnosed by my primary. I have an appt next week. Just curious.. how many of you suffer from Fibromyalgia as well? What do you do for treatment?

[Annaliese]

Yes, I have fibromyalgia which started at exactly the same time as my hyper POTS (sudden onset). I am also currently looking for remedies! I was diagnosed with SICCA syndrome plus costochondritis and also temporomandibular joint disorder. TMJ disorder is the most annoying for me.

[songcanary]

Hi, I have fibro and just recently started low dose naltrexone, which is helping quite a bit. I also take doxepin and magnesium at night. Have had three deep tissue massages recently and they were very helpful as well. I also practice yoga in a class three times a week.

[potsgirl]

There seems to be links between POTS/autonomic dysfunction and fibromyalgia and chronic fatigue syndrome. My doctor thought that I probably had both due to the POTS, or that at least they were hard to distinguish because the symptoms are so similar. I know that I've been diagnosed with chronic fatigue, and I think that's pretty common among our population (along with fibro).

[Lovebug]

I have Fibro and my symptoms significantly improved with Vitamin D and going to the chiropractor. Now I rarely get flu like achiness and if I do, I use the heating pain. One day I'll get a hot tub as I've heard this helps. I do have visceral sensitivity and lots of "inside" pain (mainly abdominal) so I take Celexa for that.

[kayjay]

yes. I take cymbalta. Lyrica helped more but I had side effects. Cymbalta takes a while to work and I am not pain free but I am able to basically ignore my aches.

[samannran]

I have fibromyalgia. My neurologist feels it goes along with the PAF. I just got back from my rheumatologist appt. I get shots of 4 mg of Decadron every six weeks for the fibro and the coat hanger pain in my neck and shoulders. I also take Cymbalta, Tizanidine, and Tramadol along with my other meds for PAF. The shots help for five weeks. I'm still in pain, but it's tolerable. The shot are painful but worth it.

[Kyler]

My son's doctor has an all inclusive take on this. He explained that the symptoms of POTS are all the same as FM and CFS. Just like any illness some people have all of the POTS symptoms and some only have a few - either way it all relates to the clinical definition of POTS. My son has FM and CFS symtoms but his only DX is POTS. He also has GI problems due to the lack of proper blood flow to his intestines caused by the blood pooling in his extremities but he never sent him to a GI doctor - each time Kyler had a decline in his condition with increased nausea and abd. pain his POTS doctor adjusted his meds and fixed it. The all inclusive approach has saved Kyler from many unneccesary tests in my observation. In the beggining I thought that he needed to be tested for everything but his doctor works magic and makes everything make sense and proves his expertise with real results. Kyler is still sick but his quality of life is pretty good all things considered. I just wish that POTS would stay the same and not change every 2 months or every day for that matter - so annoying.

[sj75]

I was told by my immunologist that I have fibromyalgia. When I saw my cardiologist he said that when you have something like pots that has a multitude of symptoms ( many similar to other conditions)it's easy to end up being told you have lots of other things as well when actually what you have is just all part of the pots. I have to say I'm inclined to agree, obviously not in all cases but for the most part.x

[stacdliw]

I, too, have fibromyalgia. I've had it for about 17 years now since being diagnosed with Chronic Fatigue. My neurologist at Vandy referred me to a rheumotologist when one blood panel of immunological testing signaled a possibility of Lupus. Luckily, Lupus was immediately disregarded as a potential new disorder. However, when I asked the cause of my leg pain when I gently run my fingers up my legs, he said, moderate/severe fibromyalgia!

I take Cymbalta which has helped a lot. I recently discovered I was low on Vitamin D and I'm taking 5000 units of Vitamin D daily. I am pleasantly surprised at the relief in muscle pain this has provided. I strongly urge you to have your Vitamin D levels tested.

I use to take Tramadol for the pain; however, I have recently developed an idiopathic pain disorder ( which my GI believes is caused by the neuropathy) and now take oxycodone as my primary pain reliever. My pain specialist also prescribed a topical pain reliever called Voltaren Gel which helps as well.

I also use a heating pad for pain relief. I recently bought the Petite Thermophore Heating Pad from Battle Creek which has a Velcro strap to allow the heating pad to wrap around my leg-- it has been a godsend! I recommend it to anyone who needs a heating pad to wrap around specific areas such as the legs or arms.

Hope you find some relief from the pain of fibromyalgia soon. It truly can be maddening! Good Luck!!

[Lovebug]

My son's doctor has an all inclusive take on this. He explained that the symptoms of POTS are all the same as FM and CFS. Just like any illness some people have all of the POTS symptoms and some only have a few - either way it all relates to the clinical definition of POTS. My son has FM and CFS symtoms but his only DX is POTS. He also has GI problems due to the lack of proper blood flow to his intestines caused by the blood pooling in his extremities but he never sent him to a GI doctor - each time Kyler had a decline in his condition with increased nausea and abd. pain his POTS doctor adjusted his meds and fixed it. The all inclusive approach has saved Kyler from many unneccesary tests in my observation. In the beggining I thought that he needed to be tested for everything but his doctor works magic and makes everything make sense and proves his expertise with real results. Kyler is still sick but his quality of life is pretty good all things considered. I just wish that POTS would stay the same and not change every 2 months or every day for that matter - so annoying.

I completely agree with your son's doc! Only I don't see POTS as the primary diagnosis but Dysautonomia being the mother umbrella that governs all things controlled by our nervous system.....be it POTS (orthostatic changes) , CFIDS (fatigue/immune response), Fibromyalgia (muscle pain), etc. Our nervous system even controls our hormones. My Dys doc (cardiologist) has saved me numerous tests as well. He forced me to try Celexa for my excruciating abdominal pain and it worked. Like you said, I still suffer alot but at least I'm functional.

BTW....love your sons name!

[Elfie]

I was diagnosed with atypical fibro just prior to my pots diagnosis. However, I have been largely in remission from the severe pain for two years. I get an occasional flare, but have found reducing stress (caused by interpersonal relationships) and water exercise has helped greatly. I still have pain when I end up with a few stressful days or weeks though. My body just doesn't do stress-- which is terrible because my mind is excellent at coping!

[peregrine]

I've got fibromyalgia, plus hypermobility syndrome (hypermobile plus pain - fun times!) - finally diagnosed with both by a rheumatologist back in 2008; prior rheumatologists said myofascial pain syndrome, which didn't account for the joint pain, which is my main problem. And apparently I now have POTS (still getting used to having another diagnosis and symptom cluster to deal with). I also developed bipolar disorder back in college. We know with some certainty that the bipolar is from my dad's side and the hypermobility is from my mom's side.

I joke with my primary care doctor that my nervous system just has it in for me - nearly all of my health problems are nervous-system related. We did do a brain MRI back in 2009 to rule out "structural abnormalities" [aka tumors] as a cause of some vision stuff, so at least I know that my central nervous system looks mostly right... *grin* Starting to believe these things are all tied together I just can't believe that my body and nervous system can have this many things wrong with it, all for independent reasons.

[ramakentesh]

There is similar substrate between these disorders - as an example assymetric dimethylarginine is found both in Fibro patients and could be a potential cause of Low Flow POTS. However, Fibro is also associated with increased in substance P, whereas this hasnt been found in POTS.

[lieze]

The neurotransmitter link is interesting to me especially when first bipolar is developed then POTS. Many if us have anxiety then POTS and eating disorders and POTS and I have wondered if my serotonin levels are too high and causing many of my symptoms.

When I search are there high serotonin levels in bipolar the answer I get is there are high norepinephrine levels in bipolar.

Well that is what many of us are dealing with and we're dealing with not constant but intermittent mood issues related.

I would describe my self more along the lines of severe anxiety/ periodic euphoria.

This really a puzzle.

Obviously body chemistry is involved.