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Fibromyalgia, severe pain in neck and legs

cracker1cracker1 Member Posts: 1 Listener
edited February 2018 in Cerebral Palsy
Hi my friend has fibromyalgia and gets severe pain in his neck and his legs the patches dont work is there any other medication he can try please advise he is only 41 and is so bad it would break your heart looking at him. 

Replies

  • Diane1729Diane1729 Member Posts: 5 Listener
    edited February 2018
    Hi Cracker so your post so felt I needed to answer.  I have severe Fibromyalgia and I have tried most of the medications but they do not work for me the patches included.  The side effects far outweigh any good.  Each to his own that is up to the person.  I have trigger point injections every 8 weeks.  Also acupuncture and hydrapool.  This of course does not completely get rid of the pain, but worth a try.  Hope this helps.
  • jamie1965jamie1965 Member Posts: 85 Courageous
    I have dyhdracodine deluxitine gamapental also have  diazepam for when I have flare ups I was also sent to a pain management course at the local hospital and was offered injections into my spine but declined these after researching them there is a site called fibromyalgia Uk they can give loads of info on the condition and may be of some use as they have advisors you can contact direct hope this helps I have tried many pills over the years not everyone reacts well to the different meds unfortunately it is trail and error and as soon as you find one that suits have to change again as body becomes used to it diet and stretching and heat helps but no cure life is hard but you learn different ways to try and cope good luck all the best to your friend I know the pain he has and very debilitating unfortunately  
  • Gail1205Gail1205 Member Posts: 6 Listener
    Diane1729 said:
    Hi Cracker so your post so felt I needed to answer.  I have severe Fibromyalgia and I have tried most of the medications but they do not work for me the patches included.  The side effects far outweigh any good.  Each to his own that is up to the person.  I have trigger point injections every 8 weeks.  Also acupuncture and hydrapool.  This of course does not completely get rid of the pain, but worth a try.  Hope this helps.
    I have also got fibromyalgia and I have days when all I want to do is go to sleep due to the fatigue and there are days when I can't do anything as I can't get any rest as pain is too bad I can't sit, lye, or stand for too long

    Gail1205
  • Gail1205Gail1205 Member Posts: 6 Listener
    jamie1965 said:
    I have dyhdracodine deluxitine gamapental also have  diazepam for when I have flare ups I was also sent to a pain management course at the local hospital and was offered injections into my spine but declined these after researching them there is a site called fibromyalgia Uk they can give loads of info on the condition and may be of some use as they have advisors you can contact direct hope this helps I have tried many pills over the years not everyone reacts well to the different meds unfortunately it is trail and error and as soon as you find one that suits have to change again as body becomes used to it diet and stretching and heat helps but no cure life is hard but you learn different ways to try and cope good luck all the best to your friend I know the pain he has and very debilitating unfortunately  
    I use a hot tub in my back yard to help my pain as i found tgat going to hydrotherapy was too stressfull, it took all my strengh tho get undressed at tge pool and then dressed again that i spent 3 days or more getting over the visit to the hospital.
  • ClaireSaulClaireSaul Member Posts: 92 Pioneering
    @cracker1 You have been given some good advice for supporting your friend, but it is awful knowing there is so little that can be done.  A couple of websites that may be able to offer some support are http://ukfibromyalgia.com/index.php and http://www.menwithfibromyalgia.com/.
    The Men with Fibro also have a facebook page.
    Not all areas have hydrotherapy but A GP should be able to refer if it is available; and like Gail, for me the trek to get to the pool caused me more problems than relief - but I do like the idea of a hot tub!  I will have a look for any more suggestions specific for fibro and come back to you.
    Claire
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • Sobia786Sobia786 Member Posts: 1 Listener
    I think i have fibromyalgia. Im struggling with severe pain and it gets so exhausting. I was given pregablin and that has reduced the amount of pain im feeling but hasnt got rid of it. Now all i want to do is sleep constantly as i get tired just walking. Is this normal for fibromyalgia 
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    edited February 2018
    Hi @Sobia786, and welcome to the community!

    It sounds like you're really struggling, and I'm so sorry to hear about your pain. Have you talked to your GP about the possibility of fibromyalgia? They will be the best placed people to help you pursue a diagnosis. NHS Choices have some details on fibromyalgia symptoms that you may like to read.
  • sunflower60sunflower60 Member Posts: 1 Listener
    I have got  fibromyalgia , it is the pain i am in with , i just dont seem to have any free time from the pain .
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @sunflower60, and welcome to the community!

    I'm so sorry to hear that you're living with pain. You might also like to check out the links provided above by Claire, or check out our previous chronic pain discussions.
  • ElizabethmaclureElizabethmaclure Member Posts: 2 Listener
    Hi @sobia786. I've got fibromyalgia and been struggling to walk for a year now. Been using a walking stick now for around 8months.  So painful and exhausting . Get checked by doctor but would need to see a rheumatologist for a diagnosis. Mine told 23rs from when I got really severe with it 
  • ClaireSaulClaireSaul Member Posts: 92 Pioneering
    Hi @Sobia786, @sunflower60, @Elizabethmaclure,
    Great to meet you - shame about the circumstances.  Apologies for the delay but I had my own bad day yesterday.  
    In my experience pain is exhausting, both mentally and physically. 
    I also know that one of the commonest side effects of pregabalin is feeling sleepy - I have been taking it for some time now and it did affect me at first - but it is one of those drugs that has a huge number of side effects that affect everyone differently.  Sobia, hopefully your body will adjust and to sleepy feelings will ease -  and as suggested above ask your GP about fibro and seek a referral for diagnosis.
    There are lots of fibro sufferers who write about the difficulties of living with pain - it can be very hard for someone who has never experienced it to understand.  I have picked a couple of links that might be helpful/supportive:
    https://www.mesheacrysup.com/about-fibromyalgia.html
    https://melissavsfibromyalgia.com/2018/02/15/what-works-for-me-9-things-to-fight-fibromyalgia/
    Fatigue and flares are part and parcel aren't they?  For me Netflix/similar becomes my best friend on these days with a hot pad and blanket!
    Let me know how you all get on
    Claire
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • angelfitzangelfitz Member Posts: 4 Connected
    Hi Cracker1 I also have Fibromyalgia and have had it for over 20 years along with arthritis to my hips, knees and spine. I have spinal injections 3 times a year and hip injections 4 times a year but im on morphine for pain and although it does help a little along with the fibro I am shattered all the time so tend to sleep during the times kids are at school as cannot sleep at night due to the pain most nights. But o foster bunnies for a local animal charity and find being mobile helps with the pain along with swimming. Although unless the pool has walk in steps I find it hard to get out as just don't have the strength to climb the ladder style steps. I also found accupunture helpful but our local hospital only has funding for 6 sessions on the nhs so I am looking into finding an affordable replacement. I hope your friend finds some relief soon.
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