August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Discussion in 'General Treatment' started by heapsreal, Sep 15, 2010.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    I have used lyrica before but 6 months ago changed to neurontin as lyrica stopped working for the leg pains i was getting at night. Lyrica was still helping improve my sleep and did help when my lower back pain when it played up. Switching to neurontin did help my leg pains which was destroying my sleep but after being on it for 6 months its not working as well as it was. Neurontin i found didnt help at all with my back pain and not as well for sleep as lyrica and had no side effects from neurontin.

    Anyway i started back on lyrica last night. yesterday afternoon i had that brain fog type headache feeling and the last few days my back has been giving me grief, so i took my lyrica at about 7pm last night, within an hour the head thing that was going on was gone, my lower back felt good and i dont think i realised how tight all my muscles have been until the lyrica kicked in. Basically i felt great, nice and relaxed not drowsy, almost normal, then later on in the night i took my sleep meds and bang was out for the night, no leg pains and got a good 10hours sleep, woke up and felt great. I can really feel a difference when i sleep well. I think it worked so well for me because i have had a break from it for 6 months. I know i will get a tolerence to it eventually, but when it happens i will change back to neurontin for awhile and then back again. I only take this med at night at 150mg, although have taken it during the day when my back has spasmed and it has helped alot.

    so whats my point, i just thought i would let u all know and maybe lyrica will give me a 12 months supply for free for my great endorsement of it lol. I know its not for everyone but its worth a try and it helps alot of symptoms of cfs.

  2. Boule de feu

    Boule de feu Senior Member

    Ottawa, Canada
    Unfortunately, Lyrica did not do much for me. I switched to Neurontin, but it doesn't do the trick either. Right now, I'm trying Mobic (but need to keep taking Neurontin for other problems not related to pain). I don't have much success with this one, either. I wish I could find something that works. My pain is at 8,5 with peaks during the day.
    I am happy that it is working for you.
  3. Becky


    Lakewood Ranch Fl
    Lyrica works great for some people. I'm glad it works for you.

    When I took it, I had terrible side effects, like jerk muscle spasms at any given moment. I would drop things and spill things. I took it as a part of a drug trial and was instructed to take it during the day at at night. I was given Lyrica for Fibromyalgia trigger point pain, which I had everywhere.

    The good part about doing the trials ---- all the tests to rule out other things. So I have a dosier of what I don't have !

    Next I was diagnosed with a sleep disorder common to people with Fibromyalgia and took Xyrem for about a year. I no longer have the trigger point pain. However, FDA did not approve it for sleep disorders and I would have to pay $1600 a month to get it. The good news I no longer have the pain associated with Fibro. Since I stopped taking Xyrem, I have the achy, exhausted, brain fog, concentration problems, memory issues, so I wake up every day feeling like a truck ran over me all night. I would love to be able to get back on Xyrem.

    To sleep I take trazadone, tramodol, Lunesta and 5HTP. I take it in two doses starting at 7:30 or 8. During the day I use tramadol and it works fine.
  4. Tia

    Tia Senior Member

    Oh man, this is so interesting because when I looked up Neuropatic pain, it said: chronic pain that can feel like burning, stinging. I've had this and have it now and then. I've been hospitalised for it, at it's worst I felt like I was going to faint 24/7 from the pain, but never did. They gave me morphine but it only took it by 70% and made me all drowsy. This went on for a year until my doctor said (Icame in in a wheelchair we borrowed there, because I couldn't stand up because of the pain) it was muscletension (probably from anxiety) so he gave me Valium (stesolid in this country) and sure enough when I concentrated on not tens up, it dissapered, of course I still have i mildly so I always have to remember myself to stop tensing up.

    But it says it feels like a burning, stinging pain, and all of those i talked to, had never heard of that and now when I read this it felt just great to see othera have experienced this to!
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    hi tia,
    My generalised cfs/fibro pain is off and on and its a sort of tingling sometimes burning feeling, which i seem to get alot around the shoulder blades. my lower leg pain is a deep to the bone ache type of a pain. But yes i dont think we realise how much overall tension we have in our muscles that probably causes low grade pain and fatigue. Anticonvulsant drugs like lyrica and neurontin are suppose to be good for this, i also find tramal effective to but mainly use this for lower back pain i get from severe arthritic facet joints. Benzo type meds are also good for this muscle tension. When at family gatherings theres always someone giving someone a neck and shoulder massage and when my sister gave me one she said my muscles were really tight but i couldnt tell as they are always like that, then my bro had a go and he said the same thing, i must admitt the massage felt good, just have to get my wife to do it now but women always wont it in return, lol.

    Becky, im glad xyrem has helped u, i would love to try it as sleep is one of my worst symptoms and probably why my muscles are so tight, but $1600 a month , i wont be using it to soon. 2 nights ago when i took my first dose of lyrica in 6 months i also used rohypnol and avanza/mirtazapine for sleep and i think that combo definatetly got me into deep sleep, i will give it a few more days before i try that combo again, i get tolerant to sleep meds very easily which is a bugger.

  6. Francelle

    Francelle Senior Member

    Victoria, Australia
    Tia, neuropathic pain was one of the first symptoms I got just over three years ago when I first got sick. It was very puzzling all this burning (yet icy) pain in my legs, as well as buzzing like electrical currents in my feet and stinging sensations. Initially my doctor said I had ‘peripheral neuropathy’ (PN) so I tried to research all the conditions associated with PN. In all the research I did at the time, not one of the many medical articles I read ever mentioned that PN can occur with Fibro /M.E. However since then I have heard that many people with M.E./Fibro complain of neuropathic pain. Also the CCC includes it in its criteria. So you are not alone.

    Heapsreal I have been on Lyrica for a little over one year now but unlike you at this point it hasn’t become ineffective. Admittedly I have increased my dose over time from 75mg to150mg then to 225mg and now I am on 300mg. I hope I don’t have to go any higher as it is already $150 per script. Like you I take my entire dose at night. When I tried taking it in the day I was a zombie. At least I sleep well now.

    I estimate that Lyrica has reduced my neuropathic pain by 30% and along with regular Panadol and sometimes Tramadol the bone aching pain in my legs etc. is reduced enough to allow me to sleep
  7. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    Nerve problems are helped by Lipoic Acid. I use Lipoic Acid Supreme. Diabetes patients are helped by it also. My feet gave me problems once my POTS started. After a couple of months on the Lipoic Acid Supreme, the problems are gone. It was a huge relief!!!! My doctor gave me the amount and the brand that was best for me.
  8. Kalebleo


    I was on Neurontin with heavy doses to attempt a better management of my pain from nerve damage. I was given Lyrica because it carries FAR less side effects, is more effective in pain management and requires less dosage. It's still a Gabapentoid, but synthesized better and as it's still a non-generic drug here in the U.S., the lack of side effects from inert fillers helps make it better as well. While in my case, the Lyrica isn't stopping the pain, it's softening the severity and sharpness with the same effext as Neurontin w/o the side effects and mass amounts of dosage. (i take 600mg of Lyrica a day, as opposed to 4500mg of Neurontin).

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