The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Anyone had good results from Lyrica without terrible side effects..?

Discussion in 'Pain and Inflammation' started by hellytheelephant, Feb 10, 2017.

  1. hellytheelephant

    hellytheelephant Senior Member

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    I was prescribed Lyrica a week ago as my pain was just out of control ( I have been in crash for the last 6 weeks). I am a chronic pain sufferer in addition to ME/fibro pain, and it is moderate- severe. The pain is has greatly reduced in the last day and I was able to get out of bed without using my stick, BUT side effects include: palpitations, jitters, anxiety, like I'm on the edge of a panic attack, trembly, manic energy and unable to rest or stop, negative thoughts, feeling starving hungry and craving sugar....and I have just been reading up on the other side effects!! I gather it is also hard to get off and causes huge weight gain....


    Your thoughts?
     
  2. ebethc

    ebethc Senior Member

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    didn't have the awful side effects that you had, but it did nothing for me... I also went through a phase w ssri's (which are similary), etc., and none of them helped, and I gained a LOT of weight..Hard to lose when you're exhausted all the time... Now I go to doctors and they tell I'm sick because I'm fat... IMO, DO NOT go down the road of lyrica, ssri's etc..

    I've tried so many things for pain, and none of them have been fantastic but I will say that the natural things are the best for me personally... malic acid, magnesium, proteolytic enzymes (read the reviews of wobenzym on amazon... why didn't I discover this sooner?.. I am currently taking a similar product called vascuzyme)... Alot of ppl like LDN (you can find lots of info on this forum) and it wasn't ideal for me personally (def helped w pain, but made me more tired..), but you might have luck there..
     
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  3. Kina

    Kina

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    Not everybody gains a 'huge' amount of weight. I don't know what dose you are on, many are super-sensitive to meds. You could talk to your doctor about re-starting at a very low dose and titrating upwards until you get pain relief without all the side-effects which are often dose dependent.
     
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  4. hellytheelephant

    hellytheelephant Senior Member

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    What magnesium do you take? it is something I would like to try.
     
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  5. bertiedog

    bertiedog Senior Member

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    Lyrica at 25 mg has got rid of the severe almost daily migraines I have had really badly for the past 30 years but it didn't touch the recent attack of spondylitis pain. At such a low dose I didn't really think it would but its like a miracle what it has done regarding the migraine. I only take it first thing on waking.

    What does help with the spondylitis pain is extra Prednisolone. I have to take this at 6 mg daily because I am steroid dependent but with the terrible pain in my neck I needed to go up to 10 mg for a short while. I could literally feel the effect of the steroid wear off and the pain would be almost unbearable. NSAIDs didn't touch it but 8 mg Co-Codamol would also help for about 5 hours but as it constipates me I didn't take more than 24 mg in a day.

    In my case the pain was so severe and didn't improve for around 12 days because I had developed a throat infection. This pain didn't really get under control until I started on an antibiotic and then within 24 hours the pain in my neck became bearable. I have now had it for 2 weeks but managing it without painkillers, just use a PEMF device on my neck and pleased to say I am back to my 6mg Pred.

    I am mentioning this infection because I really was surprised how much it increased the pain I was experiencing and how I couldn't get over it until the infection got under control.

    I hope you find something that will help as chronic pain is absolutely exhausting.

    Pam
     
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  6. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I have all of these side effects too on 25mg. I was bouncing off the walls with the manic energy (which i kind of enjoyed as it was such a change)

    Massive weight gain also, went from stick thin my whole life to putting a stone of weight on.

    After 3 weeks was the strangest of symptoms: I was standing at the top of my stairs and i literally felt a hand in the middle of my back that pushed me with force. If my partner hadn't been there to catch me i'd have been a gonner.

    This happened again that same week when i was crossing a road. A double decker bus was just about to pass and that same invisible hand pushed me into the road but i managed to get back to the curb in time. It even 'felt' like a hand on my back.

    I stopped taking them that same day, but because they kick in very quickly I take the odd one here and there when pain or migraine is really bad and they give a quick relief of symptoms to give me a break. I'd never take them 2 days in a row though.
     
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  7. ebethc

    ebethc Senior Member

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  8. ebethc

    ebethc Senior Member

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    spooky! I've never heard of a side effect like that before.. eerie..
     
  9. hellytheelephant

    hellytheelephant Senior Member

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    Bouncing off the walls describes yesterday- it was kind of novel- but then I couldn't stop....and got no rest yesterday. Today feels like I have overworn myself out.
    I could not cope with the mental symptoms- black thoughts. Our family has a history of manic depression ( my bro, grandma and cousin have bi-polar and my bro Schizophrenia as well- and everyone in my immediate family has depression/anxiety probs) and to be honest that would just be swapping physical pain for mental....
     
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  10. bertiedog

    bertiedog Senior Member

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    My migraine consultant said Lyrica seemed to be working like a painkiller for me rather than a preventative, however it still seems to work as a preventative because I haven't had to take any Sumatripan for 2 weeks which is unheard of for me. It is just a month since I started it and took about 3 or 4 days for this beneficial effect to really kick in. I am still getting used to the fact that I don't have terrible heads anymore.

    Pam
     
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  11. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Yeah that was the same for me with the manic energy, after a few days of being wired it was taking its toll on the ME, which is a shame because i was really enjoying talking (normally talking is my biggest energy drain, and while on this i never shut up, all day long)

    I forgot to mention though that the only symptom of yours i didn't get was the negative thoughts. The manic energy really cheered me up, until it wore me down physically. Its a strange drug. I love it and hate it at the same time :thumbdown:
     
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  12. Jan

    Jan Senior Member

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    I know you asked for positive experiences, but I'll add mine too. I don't get the manic energy so much any more, but it often make me feel wide awake and manic late at night. I have a lot of neuralgic and neuropathic pain, which is the reason I take it. It takes the edge off, but in no way controls it. It took me years to get the dose down to twice a day as the side effects like dizziness were so severe I had to take 4 times a day.

    I am quite desperate to find an alternative so I get get off this drug due to the dreadful side effects of never feeling full and raging sugar cravings, plus the dizziness and 'not quite with it' feeling. I wouldn't drive whilst taking this med, it has even made me far more unsafe with things like crossing the road, which wasn't great before I started it.

    The weight gain is very depressing, I've gained about 2.5 stones and it shows no sign of slowing down or stopping. I remained slim for over 20 years, so it's not the inactivity causing this.

    I would like to try LDN at some point, but I need to research this more as I think you need to come off other meds before starting it.
     
  13. carer51

    carer51 carer/partner of moderate/severe sufferer

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    It's odd that it makes you feel jittery - I have taken it in the past for generalised anxiety disorder. I wonder if the different dosages have different effects. I also immediately thought though that these seem like they may be start-up effects as your body gets used to it.
    For me I felt a bit zombie-ish but I wasn't taking it for pain; I think for pain a) the dosage is very different and b) it seems like sometimes with drugs that act on pain, the pain sort of soaks up the zombifying effects. i guess it's a matter of which is worse.

    I was taking about 300mg a day, which would be much lower than the dose prescribed for pain to my knowledge. Although my partner doesn't take much more than that of Gabapentin becuase of the side effects - he gets nauseous very easily - we're weaning him off it slowly as we're not sure the effectiveness for pain at that dose is worth the side effects.
     
    Last edited: Feb 10, 2017
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  14. Countrygirl

    Countrygirl Senior Member

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    I know you asked for positive accounts @hellytheelephant and I can't give you any, but there is one other problem that it is important to be aware of.

    I had tried gabapentin for neuropathic pain, and put on three stone in weight, which has proved to be super-glued and won't shift. It didn't help the neuopathic pain.

    I was switched to Lyrica. Within days, I had malignant hypertension, a dangerous condition and phoned the pharmacist. He told me that Lyrica is know to trigger a dangerous bout of malignant hypertension ( hypertensive emergency which causes organ damage) and to stop it at once. It also failed to touch the neuropathic pain.
     
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  15. carer51

    carer51 carer/partner of moderate/severe sufferer

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    I was actually googling about it recently because I have an old stash and was wondering if it might be alright as long as I wasn't also on an SSRI (I came off it as I was trying to eliminate the sources of fatigue).

    I used to take quite a big dose of my stash when my (mystery) back pain was really bad - or my neck cramped up in a way that I believe was a pinched nerve - then I'd be high as a kite drunk for at least 12 hours.

    So my recent googling suggested that a tolerance builds very quickly (at least for anxiety, that's what I was focusing on) and people end up on quite zombifying doses. So some people only take it around 3 times a week to try to avoid the tolerance issues. Again, that's for anxiety.

    It does sound like you are having an adverse effect to be honest. If anything you should feel like you're drunk...
     
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  16. bertiedog

    bertiedog Senior Member

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    I guess it all goes to show how different we are but I am sure its all about the dosage one has to take. I don't have any side effects at 25 mg at all but I am obviously extremely fortunate. I just cannot stress enough how it has completely changed my life for the better. This is the only drug that has stopped the appalling migraines I have been suffering for over 30 years hence me calling it a miracle.

    I do believe that there is a genetic reason as to why it works for me because it works on the GAD enzyme to convert glutamic acid into GABA lowering glutamate. I am homozygous for 2 of the GAD 1 enzymes so its highly likely the Lyrica is enhancing this enzyme so I get lower glutamate which is known to cause both epilepsy ad migraine.

    Pam
     
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  17. Jan

    Jan Senior Member

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    After giving this some thought, I realise that I have become manic, in so much as I can't seem to stop myself once I start doing things like cleaning, and spending too much time online until my eyes really hurt. My pacing has been terrible because of this, which has had a detrimental effect on the ME. Looking back, I'm sure I wasn't like this in the past, it must be the Lyrica causing it, it's like a voice in your head keeps saying, come on you can do this, keep going, mustn't stop. It's bloody Simon Wessely in tablet form!

    I've got to get off of this drug!
     
  18. hellytheelephant

    hellytheelephant Senior Member

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    Thank you everyone for sharing your experiences- apologies for not having enough power in my battery to refer to you all individually. it seems that the answer to my question in the title, is either : No, it hasn't helped or it has helped a lot, but the side effects are quite bad. I suppose as individuals we have to decide whether the pain relief is worth it. For me it has shown me that however bad pain makes me feel, I prefer that, rather than feeling possessed by something dark and destructive that needs to eat a lot of cake! ( bad, bad, sugar cravings, when I hardly eat sugar usually)

    This thread has really encouraged me to tell the GP that I want to stop- and she was in total agreement. My symptoms were both physical and mental and really, really overwhelming. Today my 'normal' sense of self has returned and I feel a little shaken, and emotionally overtired. @Jan what you describe is part of what I felt when it feels as if you can't stop- the worst thing for someone who has to pace. @Countrygirl, thank you for the warning- it is obviously powerful stuff and this experience has made me realize that anything strong enough to turn down the volume on the physical pain to any great degree, will also create new, and substantial health problems.

    Like the rest of you with chronic pain problems, I will just have to take it one day at a time....
     
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