Friends in the UK from SH in the US

I was diagnosed with fibromyalgia nearly 20 years ago and I have managed to deal with my pain pretty successfully during that time until quite recently. I work for a social services organization which serves persons with disabilities. Recently, I was called upon to attend an event which had me on my feet for 8-10 hours standing on a concrete floor. As you may imagine, the following day, I had excruciating pain in my legs and feet. Since that time, the pain has only escalated and I am now awaiting the decision on my short term disability as I am unable to walk even short distances without pain and neuropathy, I have received some relief from gabapentin (neurontin) but unfortunately, the relief is short lived.

This is a new symptom for me. I am fortunate in that I have a physiatrist who believes in me and understands my symptoms. My primary care doctor only manages to refer me out to other specialists as I believe that she is at her wits end.

I am having some difficulty coping with this new symptom both from a pain and psychological standpoint. I am fortunate to have a partner who is supportive and we are getting along just fine. Better than many in America with its every changing health care landscape. God help us!

Thanks for listening. I wish you all well.

7 Replies

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  • Hi there SHUS It's very nice to meet you. Please let me be the first to wish you a very warm welcome to our group. You may like to take a peek at our mother site it is a wealth of information and you may find it very helpful. fmauk.org.

    I am sorry your suffering it really is hard to get our head round some of the stuff that we have to deal with that's for sure. So glad to hear you have a caring partner he sounds a keeper for sure.

    I have toiled with fibro for 30+ years and with out my hubby and his wonderful support and understanding I have no idea where I would be today.

    I am sure our marvellous members will be only too happy to share their wealth of information and friendship with you. Please feel welcomed xx

    Mo

    PS SHUS I have just noticed you have not locked your post. You may wish to do so for this and all futer posts. It stops it been seen by the world wide web and may generate more replies if kept private. Here is the link on how to lock your posts. If you need further help please just ask.

    healthunlocked.com/fibromya...

  • Hello and welcome to our friendly fibro forum where you can get help, support, advice and understanding along with a chuckle or two to lighten the day.

    I do urge you to look at our mother site fmauk.org it has a wealth of information, including guides and links.

    Another site for information is our UK NHS site which is also good.

    nhs.uk/Conditions/Fibromyal...

    It can be hard to accept our "normal" life is changing, but it need not be for the worse.

    Coming here is a first step in learning how others cope, the pitfalls of not pacing, the possible side effects of medication and more.

    Perhaps your primary care doctor will assess your medication and either increase the dosage or prescribe something different. Pregabelin (Lyrica), a sister drug to Gabapentin, is often given in place and can be very effective.

    It is fortunate that you have such a caring and understanding partner who will support you, as you say health care can be a bit haphazard in the US.

    Looking forward to seeing you around the forum.

    Kay

  • Hi my fellow American..although I'm in the U.K. We both have similar situations..I was diagnosed in the U.S. for Fibro 25 years ago..i was only 19...had a few flare ups every 5 years..mainly in upper back or Ibs issues..was in remission for almost 6 years and now legs have just gone...painful with pins and needles can't walk or stand for more than 15 minutes at a time. I also have ostearthritis of lower spine. All started back in November had a very physical job..always on my feet walking..loved it! I have support from my hubby but like yourself not coping to great. The other week I thought we'll I'm not working..learning how to pace and readjust my life...then today started crying because I can't even go shopping for food or clothes on my OWN! I am lucky though to have a good doctor and rheumatologist on the Nhs in southeast England. I wish you the very best and know you are certainly not alone!

  • I think many of us can relate, NHS and Social Care over here is absolutely in bits the result of the last 18 months punishing lack of resources or general attention to the very basics! In trying to cut corners predictable lack of savings in favour of wasting funds. The maelstrom spinning round those of us in the middle of it all is horrendous. I'm sorry, so very upset. Talkedto a Dr. today, dont know whether it will change anything or not. Scared but so very reluctant to just give up. I wish you all the very best. xx

  • Hello Try some codrydamol for your pain my doctor put me onto them God luck

  • Hi SHUS

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

    I am so truly sorry to read of your suffering and struggling and I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • I truly hope you can find the relief that you need. Morning hugs from the U.K.

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