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Fibromyalgia and ME/CFS Discussions of medical issues and treatments specific to Fibromyalgia and ME/CFS.

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Old 12-25-2007, 03:49 AM   #1 (permalink)
Zelig
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CFS / myalgic encephalomyelitis

I saw a new user was requesting a thread on this a while ago, hopefully I am not too late and they are still interested. Either way, if this thread can help support anyone, or at the very least be a spot to vent, let's use it.
 
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Old 12-26-2007, 03:20 PM   #2 (permalink)
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Re: CFS / myalgic encephalomyelitis

Thank you! I was actually trying to up my post count without spamming so I could form this topic but this works just as well.

Here's my deal. I have Graves' disease (in remission), Graves' ophthalmopathy (not in remission, dammit) and CFS (very much active!). When I am in an acute crash, I get the usual CFS flulike symptoms: swollen glands, low-grade fever, dry/sore throat, and IBS-like stuff. Also my eyes tend to swell up and give me headaches, although that's from the Graves eye disease. I became a MMJ patient when I started noticing that when I was crashed, and I smoked pot, it really eased the yucky, achy problems, gave me my appetite back, and in some cases allowed me to function when I couldn't before. So I became a patient and am learning about the effect different strains have on me.

Generally speaking I find sativas and hybrids have a better effect on me when I am in a crash. I assume because that "heavy" feeling from indicas only exacerbates the problems. I generally only use indicas when I am feeling not too bad physically but am suffering from the emotional issues that CFS folk also go through. So I do a lot of mixing and matching of meds and it has been a real boon. It's almost amazing sometimes to feel the symptoms melting away as soon as the THC hits my system. And since, due to pushing myself far too hard this fall, I have been in a bad crash for a couple of weeks, MMJ has been a lifesaver.

Unfortunately I am nervous to tell my "CFS doc" about my MMJ use as I don't know if he'd approve. I feel that I ought to give full disclosure since it's unfair to expect him to treat me without this information but if he tells me to stop using MMJ, I don't know where I'd be then. He has been a great doc who really understands about this illness and took me forever to find when 900 other doctors couldn't seem to figure out what was wrong with me when my Graves' had been in remission for a year but I was still so sick. (Okay, maybe it was only 800.)
 
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Old 03-02-2008, 02:41 AM   #3 (permalink)
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Lightbulb Re: CFS / myalgic encephalomyelitis

Dark, can you elaborate on Graves? My TSH just came back at 1.07, and high Thyroid is at .07. I seem to be having similar issues as you are, plus many of my cousins have different Thyroid issues, plus two first cousins now have Fibro.

Sadly I told my mother I was going to take MMJ, because nothing was touching the nerve pain anymore. She said anything, but MMJ. Fortunately, she doesn't live in this state.
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Old 03-02-2008, 02:35 PM   #4 (permalink)
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Re: CFS / myalgic encephalomyelitis

Hey...well, none of my issues are currently thyroid-related as the Graves has been in remission for a couple of years.

Target TSH is 0.3 to 3.0 (with hyperthyroid being lower than 0.3), so 1.07 sounds just about right. Were you told you were outside the target range? Everyone's personal range is different of course, so if you're really concerned you can see an endocrinologist and get your free T3 and free T4 tests to see if you are experiencing thyroid issues.

I never had any kind of nerve pain with Graves, but everyone has different symptoms I guess. It sounds closer to fibro or something like that. Since that runs in your family, maybe a visit to a rheumatologist would clear some things up.

MMJ is great for palliative care but it's really important you know what's going on with your body instead of just masking the symptoms daily. I mean, it's great that MMJ works on my CFS symptoms but I have to take care of myself as a CFS patient in other ways to avoid needing pain relief.
 
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Old 03-03-2008, 12:16 AM   #5 (permalink)
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Exclamation Re: Fibro, CFS

I definitely have Fibro - and unfortunately, nearly every stupid secondary and tertiary illness possible with it! I'm definitely the 'Fibro Syndrome' kid.

Just had the regular TSH done; can't afford anything else.

I keep trying and hoping perhaps there's just one other illness, and then I can feel normal again.

Right now, my gut is ripping me apart, and I'm waiting to see doctor tomorrow. Nothing has been helping this round...just not eating, unless mushy stuff, and low sugar (as usual).

Fibro always backs down a bit, when stomach and intestines do a major gurgly dance!
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