Re: Fatigue fibromyalgia

[Guest guest]

So many of us have been told we have fibromyalgia. It's the great catch-all when they don't want to understand how sarcoidosis influences the body.

Sarc causes wide spread arthritis pain. The granulomas in the muscles and ligaments and tendons that mimic fibro. And yes, it could be that too. Because fibro and sarc are both systemic inflammatory diseases-- it's easy to call it fibro. Docs don't think that sarc is able to cause such severe fatigue, and body pain. But if you have high sed rates, ESR rates elevated (or not) and are in pain-- then you've got the pain cycle and lack of restorative sleep -- you're fatigued. Overwhelming fatigue.

You all know I push this issue hard-- but get some extra fluids down--so that your body can "float" the joints and the muscles and ligaments can flush the toxins out of the muscles. Lay off the caffeine and sodas and alcohol. They do nothing but dehydrate us. Dehydration means that your electrolytes are out of whack-- and that means pain. It also means that the nerve ends are more sensitive-- and that means more pain....

Go to www.sarcoidosissharma.com and read his info. Print it out-- take it to your docs-- and help them understand this disease.

Nutrition, hydration are huge keys to being as comfortable as we can. High sugars mean neuropathy, and sarc causes demylenation from the nerve ends up to the spine (as compared with MS where it's spine outward) and that means our hands and feet and extremities as well as the small nerve fibres react with neuropathy.

We also have the "hard" spots in our muscles where they react much the same as with fibro. IF you've got a nasty spot on a shoulder that feels like a rock, it cuts off the circulation to the muscle and nerve. Unless that spot can be massaged and gently released-- (and it might not be possible) then you will have some impairment to the area that is served by that muscle. So many of those have been labelled fibro-- when if they biopsied it-- it'd more than likely come back sarc.

Hope this helps,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Monday, September 21, 2009 2:15:38 AMSubject: Re: Checking in with you all...........

Thanks for asking Darlene. Down in the dumps lately so trying to focus on non-sarc related stuff. Got the heave-oh from the neuro...your scans are clean so not much we can do for you unless you get show neuro symptoms again. Based upon symptoms (significant pain & overwhelming fatigue), they are thinking I might have fibromyalgia in addition to sarc & alopecia...sigh. They gave me a referral to a rheumy whom I'm still trying to get an appointment with. Rheumy's office is waiting on the paperwork. In the meantime, I'm off any meds pain or otherwise so they can see the symptoms. Hope everyone is doing OK.Peace, Tony