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Thread: Meds, Shots, & Other Treatments

  1. #1
    Distinguished Community Member Beader's Avatar
    Join Date
    Mar 2008
    Upper Chesapeake

    Question Meds, Shots, & Other Treatments

    Hi Fibromites,

    I figured I'd start a thread with stuff I use that seems to help, depending of course on the day, the weather, & the barometer. I'll add that I also have CFS/CFIDS.

    What helped the most was seeing a sleep doc & getting diagnosed with Restless Leg Syndrome & then being treated for that. My entire life I'd never gotten enough deep restorative sleep because my foot/ankle wiggled around and brought me up to waking or shallow sleep. The other major healing thing I did was going to a Cranial Osteopath on a regular basis. I know there aren't many of them around the country, but if you live near one, they are definitely worth a try. The treatments are extremely gentle, basically using the weight of your own body to make adjustments.

    I've been taking Lyrica 25mg x 3 per day, & I think it may be helping the bottom line pain levels. Otherwise it's Tylenol #3 w/ Codeine [1/2 tab] or Fioricet for migraines. My good friend who came down with a sudden case of CFS over 40 years ago swears that codeine is the only thing that even touches lymph node pain, & I pretty much agree. Has anyone tried Savella for FM? I just noticed that listed on a support website.

    I'll join the ranks of those who favor heat over ice since I leave my full-back-sized moist heating pad on my recliner all the time. Which reminds me, keeping my feet up as much as possible is a life saver, as well as not standing still in lines or anywhere else. That must tie in with the NMH [neurally mediated hypotension] aka orthostatic intolerance. Wearing supportive shoes is also a must, & I personally favor Merrells for their Q factor & arch support. NOT wearing tight clothing is also a must.

    Recently I started taking Pristiq for major depression, & the psych doc informed me that it works on increasing adrenaline levels, so maybe that will bring about some improvement. I just had blood work done & am curious about my cortisol levels, since my old friend thinks I'm in the subgroup with depleted cortisol. On the other hand, I don't want to burn out my adrenals, but maybe supplementing them will be a good thing.

    In the joint pain category, I've gotten Synvist [sp] injections in my arthritic knees twice [about 18 months apart] & they did help a lot & made my joints more stable & less painful. I had no idea that I also had bursitis in my hips until I finally saw a Rheumy doc, but those cortisone shots did wonders! I'd had lower pelvic pain for years & just figured it was part of the CFS/FMS quandry, but I was wrong & there was help on the horizon.

    One last thing -- if I didn't have 1/4 mg of Xanax daily, I believe I'd be on the Ten Most Wanted List. When the stress and the pain become intolerable, I may indulge in a fraction more to keep my sanity.

    I'm interested to hear what others do to relieve their pain & keep on keepin' on.


  2. #2
    Distinguished Community Member
    Join Date
    Jan 2007


    First off let me say that I am a
    male with Fibro I had a hard time convincing the doc ( since Fibro is unusual with males - no offense ladies) but a second doc. confirmed it, Beader, I have realized just now I may have restless leg syndrome, although with peripheral neuropathy it is, I guess, a tough call. All I know is I don't sleep well, my poor toes feel like they are being crammed into a small box, and my legs thrash about on their own. I am already on a significant dose of Morphine for other issues and If I did not have Xanax, I would probably be on the same list you talked about. I USED to be able to get Quinine over the counter but now, I think you need a script - it helped so now I drink Quinine water, which helps some - you may want to try it for the restless legs. I hope this finds you well and feeling better

  3. #3
    New Community Member
    Join Date
    Sep 2013

    Default Fibromyalgia versus neoromytonia

    Hi, I am a new member with the same symptoms but my geneticist told me it was neuromytonia or "Isacks syndrome".
    I have been put on a new drug, Orphenadrine citrate, common name Norflex. It has stopped all my cramping at night and helps me sleep. I also take clonazapam, codeine slow acting, DHC 12 hours, and low doses of gabapentine but find the "Norflex" the best. Ask your doctor about it it sure has helped me cope with my problem, I am 63 now but have had my problem since i was 55. I have joined Yahoo messenger and my account name is granthudson27, if you want to talk, I have never done this before so i may take a while to get my messenger site going, cheers Grant

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