Fibromyalgia And Pots

[goldicedance]

Just curious....how many in Potsville have been diagnosed with fibromyaligia? What do you do about/for it?

Thanks

[juliegee]

Just curious....how many in Potsville have been diagnosed with fibromyaligia? What do you do about/for it?

Thanks

I have never been DXed with fibro, BUT there is huge overlap with dysautonomia, in general. When my son was first DXed with NCS, I joined the Pediatric Network for OI, (orthostatic intolerance) CFS (chronic fatigue syndrome) & FM (Fibromyalsia.) That was a great source of info for kids, teens & everyone and has since ceased to exist. If you google it, they have left many informative articles, links, etc. in place, but the active forum is gone.

The founders of the site came to realize that there was so much overlap between the 3 groups that ONE site served all very well. The issues were incredibly similar.

I have exhibited every fibro symptom for years and since taking my antihistamines, I no longer have daily pain.....weird. Sorry I'm not more help. My guess is that there are many FM sufferers here, probably many unDXed.

Julie

[Rene S.]

Hi. I've had fibro/cfs for 9 years. It was hard in the beginning but I seemed to handle it ok. I was on a regimen of zoloft, klonopin and skelaxin. Nothing to me is worse than POTS. I can't even function with this one. Oh, the other thing that helped greatly with the fibro - chiropractic care and weekly massages.

Rene

[kayjay]

I think I have Fibromyalgia but I never tried to get diagnosed because for me the pain is not the worst of my problems (excluding migraines). I have whole body pain every day- I notice it more when I am less active. Massage helps when I can tolerate it- sometimes it hurts too much. I also try to stretch- doesn't really help the pain but it does "feel good".

I would love to know what helps others... but i don't want to take anymore meds.

[green]

I keep hearing that fibromyalgia, CFS and POTS are related. Apparently, POTS is a label for someone who has the symptoms of autonomic dysfunction. CFS and fibromyalgia are labels for people who experience a constellation (I am not clear whether CFS and fibromyalgia refer to different syndromes) of symptoms including, but also going beyond autonomic dysfunction.

The problem is that all of these conditions are just labels for symptoms. Until we know what causes the conditions, it's impossible to predict whether information salient to one condition can be applied to the others. Take the research suggesting that the virus XMRV (sp?) may cause CFS. I have POTS but not CFS, and I got excited when I heard about this new research, thinking "oh gee, maybe that's my problem too! Viruses are eating up my CNS, all I need is a good anti-viral" But then I realized that CFS symptoms such as tender lymph nodes, and chronic pain are suggestive of chronic infection, but POTS symptoms are not. CFS patients may have autonomic dysfunction due to chronic inflammation, and the chronic inflammation may be a very justifiable immune response to ongoing assault by a pathogen. I, on the other hand, may have autonomic dysfunction due to chronic inflammation, but chronic inflammation due to a hypervigilant immune system that can't discriminate between the flu virus and my hypothalamus. So, while the CFS patient can look forward to getting better on anti-virals, I cannot. Of course this is all just speculation and the reverse could be true as well. My point is that what ultimately matters is the chain of causality - how far back do the causes for any two conditions overlap?

I really hope, and halfway expect, that some of you out there who have a POTS diagnosis, will be getting better someday in the not-too-distant future thanks to an anti-viral drug. I don't expect to be one of those people though.

I think I have Fibromyalgia but I never tried to get diagnosed because for me the pain is not the worst of my problems (excluding migraines). I have whole body pain every day- I notice it more when I am less active. Massage helps when I can tolerate it- sometimes it hurts too much. I also try to stretch- doesn't really help the pain but it does "feel good".

I would love to know what helps others... but i don't want to take anymore meds.

[ajw4790]

I too have the diagnosis of Fibromyalgia along with POTS. Fibro. was diagnosed by a rhuemy at the Cleveland Clinic. She felt that what I was on med wise was already what she would prescribe, so she made no changes for me in regards to meds. I was already taking Cymbalta and Neurontin. Otherwise I am not sure that I do much that would be considered Fibro. treatment. Fibro. symptoms are not the worst of the symptoms normally for me. I used to treat it more... I would use the paraffin wax bath on my hands and hot packs on the joints. (the kind that are filled with rice or corn and you microwave and provide a form of moist heat) I have also used massage, in the form of massaging the major muscle groups myself. You can also use a tennis ball to massage/run over trigger points... Otherwise, I guess working on my sleep and relaxing. Also, mild exercise, especially on the swiss/exercise ball- but, that always makes me dizzy.

I think thats about all I can come up with that I have done.

[mkoven]

i don't have a fibro diagnosis, but could probably get one if I thought it would change what I do. My muscle pain, though, is secondary to eds joint instability, so that's what I focus on-- releasing spasming muscles with massage, strengthening the stabilizers, exercising as much as I tolerate, braces, sleep, treating my apnea, good body mechanics.

[Elfie]

My first major symptom was severe joint pain. POTs seemed to develop secondary to that. Docs at the Mayo said that I probably had a rare form of fibro that was affecting the nerves in my joints, rather than in the traditional fibro points. However, other than things that I was told to do for my pots (light exercise, water therapy) I was told there was nothing they could do. Every doc I have talked to refuses to medicate me because of my age (I'm 20) even when my pain is debilitating. They felt no need to diagnose me and I did not pursue it since all of the docs I have access to feel no need to treat me with anything but the advice provided above.

[juliegee]

Hi Effie-

Can't help but comment about your post. Just because you are 20, is NO reason to deny you medical treatment! How debilitated are you? Can you function? Go to school, work, etc? Even (especially!) young people deserve adequate and compassionate treatment that addresses your symptoms. Document your symptoms. Put a number, 1-10, on your pain. Move on to another doctor, perhaps a rheumatologist. Young people have some of the greatest expectations heaped upon them- obtaining education, starting a career, family, etc. You deserve to be able to do that WITH the best possible treatment plan. NEVER accept the fact that you are young as an excuse for non-treatment.

Excuse my rant, but you got my "Mommy" juices flowing. YOU are worthy of the best medical treatment possible, Effie. Fight for what you need. We got your back.

Julie

[Mrs. Burschman]

Excuse my rant, but you got my "Mommy" juices flowing. YOU are worthy of the best medical treatment possible, Effie. Fight for what you need. We got your back.

Julie

Elfie, your post made me really mad, and I have no "mommy juices." NOBODY should go with untreated pain. That's the most ridiculous thing I've ever heard. GRRRRR!

[Elfie]

Thanks Mack's Mom--

After three years I finally got diagnosed with POTS, even though I was really concerned with my joint pain. I have seen a rheumatologist and neurologist at home and ones at the Mayo. They have all decided my pain is neurological. Because there doesn't appear to be auto-immune involvement they said the only thing they could do was put me on nerve pain meds. However, not one of my doctors is willing to do that because I young and they are worried about the long term side-effects of the drug. I am in pain everyday, and every few weeks I will get a bad flair where I spend most my time just trying to get through it because I can't think through the pain. Then there are the times I am rolling on the floor and throwing up because of it. Unfortunately, I don't know what to do about it, because driving 5 hours to see another doctor (and having to go back to them) is just not very appealing after having the entire Mayo clinic in Arizona tell me that there wasn't anything they could do.

[juliegee]

Thanks Mack's Mom--

After three years I finally got diagnosed with POTS, even though I was really concerned with my joint pain. I have seen a rheumatologist and neurologist at home and ones at the Mayo. They have all decided my pain is neurological. Because there doesn't appear to be auto-immune involvement they said the only thing they could do was put me on nerve pain meds. However, not one of my doctors is willing to do that because I young and they are worried about the long term side-effects of the drug. I am in pain everyday, and every few weeks I will get a bad flair where I spend most my time just trying to get through it because I can't think through the pain. Then there are the times I am rolling on the floor and throwing up because of it. Unfortunately, I don't know what to do about it, because driving 5 hours to see another doctor (and having to go back to them) is just not very appealing after having the entire Mayo clinic in Arizona tell me that there wasn't anything they could do.

Elfie sweetie-

I'm talking to you in my Mom voice Just ignore me if you need to- God knows, my son does You need to go back to whatever doctor is the closest & will do your ongoing treatment and explain how incredibly incapacitated you are. Their idea to protect you from a "lifetime" of nerve pain meds is altruistic in theory, BUT not working for you in your real life. You describe living with incapacitating pain, rolling on the floor and throwing up. You deserve treatment TODAY. Mayo was great for the DX, but now you need a doc to work as a partner with you in choosing a treatment regimen that allows you to function.

There are so many alternatives for fibromalgia treatment today aside from the nerve pain meds, (like neurotonin and lyrica, etc.) Some get great relief from low dose antidepressants- the old-fashioned tricyclic ones, like elavil. Even florinef has also been successfully used as a treatment. There are MANY different things you can try to get some control and relief. And, if you need to start a low dose of a nerve pain meds- so be it. You deserve a chance to live a pain-free life now.

BTW, there is no evidence that fibromyalgia is a life sentence, nor that it is progressive. The idea that you need to save certain meds for later doesn't hold water. You need help today.

Mom hugs -

Julie

[mountain girl]

I have been told by a dr. that I have fibromyalgia. Started a few years before my pots. I take a sleep med because he felt a good nights sleep was one of the best things I could do for my pain and fatique. I do not like pain meds so I only take tylenol occassionally. A friend who has fibro says she takes 4 Flexeril every night. She sees a rheumatologist, but does not have pots.

[ramakentesh]

its interesting. many Fibro patients apparently have POTS when tested. Some doctors suggest that POTS, CFS and Fibro all represent a spectrum of illness with one underlying cause (inflammatory/neurological dysfunction).

[kayjay]

funny you should ask. I just got diagnosed today. My dr. is adding lyrica to the meds I am on. Hopefully I will have less pain but really I need to not sleep all of the time! kari

[kayjay]

I keep hearing that fibromyalgia, CFS and POTS are related. Apparently, POTS is a label for someone who has the symptoms of autonomic dysfunction. CFS and fibromyalgia are labels for people who experience a constellation (I am not clear whether CFS and fibromyalgia refer to different syndromes) of symptoms including, but also going beyond autonomic dysfunction.

The problem is that all of these conditions are just labels for symptoms. Until we know what causes the conditions, it's impossible to predict whether information salient to one condition can be applied to the others. Take the research suggesting that the virus XMRV (sp?) may cause CFS. I have POTS but not CFS, and I got excited when I heard about this new research, thinking "oh gee, maybe that's my problem too! Viruses are eating up my CNS, all I need is a good anti-viral" But then I realized that CFS symptoms such as tender lymph nodes, and chronic pain are suggestive of chronic infection, but POTS symptoms are not. CFS patients may have autonomic dysfunction due to chronic inflammation, and the chronic inflammation may be a very justifiable immune response to ongoing assault by a pathogen. I, on the other hand, may have autonomic dysfunction due to chronic inflammation, but chronic inflammation due to a hypervigilant immune system that can't discriminate between the flu virus and my hypothalamus. So, while the CFS patient can look forward to getting better on anti-virals, I cannot. Of course this is all just speculation and the reverse could be true as well. My point is that what ultimately matters is the chain of causality - how far back do the causes for any two conditions overlap?

I really hope, and halfway expect, that some of you out there who have a POTS diagnosis, will be getting better someday in the not-too-distant future thanks to an anti-viral drug. I don't expect to be one of those people though.

I think I have Fibromyalgia but I never tried to get diagnosed because for me the pain is not the worst of my problems (excluding migraines). I have whole body pain every day- I notice it more when I am less active. Massage helps when I can tolerate it- sometimes it hurts too much. I also try to stretch- doesn't really help the pain but it does "feel good".

I would love to know what helps others... but i don't want to take anymore meds.

Green - I don't know why some of us will not be cured- My neuro at Mayo thinks I will always have pots- I've had it for 11 years now- I just want to function as well as I can- I hope you have some good days- or moments . Don't lose hope!