1. Community
  2. Bones, joints and muscles
  3. Fibromyalgia Syndrome

Support and like mindedness people!

Posted , 7 users are following.

jemma22149
jemma22149

Hello,

I am new to forums but I am in desperate search of others experiencing the same as me - merely to help with the torment I feel I am in.

I’ve been struggling for a number of years now, the last two being the worst. My GP has only just made me a referral to what I think is a pain clinic for fibromyalgia.

I struggle with IBS, vomiting in the morning, extreme fatigue, pins and needles, lack of concentration or a mind that just blanks, migraines, body convulsions and twitching, poor sleep, easily bruised, anxiety/depression, pain all over my body and general aches. The pain sits most in my shoulders, neck, lower back and hips, chest and jaw. Excessive I know - I know there is actually more symptoms that I probably relate to but this is what stands out for now...

I struggle especially around my monthly cycle, and often have days where I find it extremely difficult to move... I also get the odd days of flare ups at the minute...

My GP has only prescribed naproxen and tramadol and these don’t seem to cut the pain. Oh, and fluoxetine that I’ve taken for years.

I am just looking for some support or as I said to talk with someone who understands me - feel like my closest are probably fed up with my moaning now! 

Thank you for reading x

0 likes, 9 replies

9 Replies

  • diane_11957
    diane_11957 jemma22149

    Posted

    Your not alone I get about 90% of your symptoms. I struggle with my mobility and suffer with joint pain, it’s an illness that can’t seemed to be explained. 

    I think part of it is being sensitive to each and every nerve jumping pins and needle, pulse rating, symptom,part of me believes that is brought on by shock and stress.

    I’ve now finally learned to listen to my body by taking regular rest breaks throughout the day, I also flare on a weekly basis. Hope the pain clinic helps.

    Best wishes x

    • jemma22149
      jemma22149 diane_11957

      Posted

      Hi Diane,

      Yes I am trying to be kind to myself and notice when it is flaring and try to rest.. 

      I also have waves of hot flushes where my skin gets really clammy.. not sure if this is part of it...

      I also believe it is triggered by shock and stress and I have experienced a number of different things that I think might have triggered it.

      I hope the pain clinic helps too - just worried someone is going to tell me it’s all in my head as I’ve heard lots of horror stories and hate hate hate the negative impact this is having on my life! 

      X

  • lesley59234
    lesley59234 jemma22149

    Posted

    Hi jemma, so sorry that you are having a bad time. The pain clinic may help but don't expect miracles, it's more about teaching you coping mechanisms and acceptance, I don't think they can help take the pain away. Fibro is a horrible illness that leaves a lot of us feeling lonely and isolated, even if we have family and friends close by.

    But - I think its important to not lose hope. You will have good times, and they may be followed by bad times, hopefully over a period of time you may learn how to avoid things that really tire you out or set off a flare up.

    I too have found that the prescribed medications do very little about the pain. On bad days I like to take my codeine and go to bed and rest as the codeine makes me very sleepy and does take the edge off the pain.  But I'm sure you don't want to spend your life in bed!

    I have explored other options as the doctor would not prescribe any more pain medication - so have been taking Turmeric capsules as this is a traditional remedy for inflammation and a friend swears by it for her knees. I have also been taking CBD oil, this has been very much in the news lately and I'm seeing more and more research proving it can be beneficial. You can buy it from Holland & Barrett (although its a bit pricey) and I have definitely felt some benefits.

    I hope the pain clinic helps.

    • jemma22149
      jemma22149 lesley59234

      Posted

      Thank you Lesley - yes I am on the journey to try and accept it and not blame myself!

      I have been vaping CBD oil and also tried the one from H&B... not seen much difference but I think it needs to get in your system! Thank you for the advice x

  • Tannersnan
    Tannersnan jemma22149

    Posted

    Hello Jemima sorry you are experiencing this, I too have fybromialgia and it's not fun. My mom Has PMR and a lot of your symptoms. I have a friend with lymes and she just started taking THCA cannabis tincture with quarter size cannabidiol patch with total relief after 3 days. I just purchased these things we live in ca where it's all legal and I am going to try it. I too have been on tramadol with no relief... will keep all posted you do the same. Best of luck.

    Teri

    • jemma22149
      jemma22149 Tannersnan

      Posted

      Yes unfortunately it isn’t legal just now where I am in the UK but I hear things could be changing too..

      It’s interesting about the PMR I don’t really know much about it but reading a little today I do see similarities!!! Thank you for the advice, hope you find the new medicine helpful also... x

  • abrasive
    abrasive jemma22149

    Posted

    I pity desparate woman in need of help left to defend for themselves. your chums probably want to help all they can.the good in some people always shines through.doctors medicines  should be up for review.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.