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Hello, I'm Thomas263 and have recently been diagnosed with Fibromyalgia

This discussion was created from comments split from: Hi, my name is Gothicfairy!.

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  • Thomas263Thomas263 Member Posts: 4 Listener
    Hello everyone. I was recently diagnosed with fibromyalga and although glad to find out what's wrong with me does anyone else get a bit low with the constant pain. Does anyone have any advice as to what I can do to manage the pain other than take painkillers. Some days are better than others. Thanks. 
  • Cher_ScopeCher_Scope Community Team Posts: 2,484 Disability Gamechanger
    Hi @Thomas263 and welcome to our community.

    I have made your comment it's very own thread so people can spot it easier and give you support :)

    In the mean-time, you can read some fibromyalgia-related stories and advice on our invisible impairments discussion board.

    Take care and I hope your pain levels reduce soon.  
    Online Community Co-ordinator

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • janer1967janer1967 Community champion Posts: 6,357 Disability Gamechanger
    Hi and welcome 

    There are lots of members on here suffer with your condition and I am sure will assist 

    You may want to look in out pain management section for some tips 
  • gentlegee1976gentlegee1976 Member Posts: 29 Connected
    Hi Thomas, I suffer from CFS/ME which, in many ways is similar to Fibro. The advice I can give is don't do too much physically, you'll only make your pain worse.

    If you have a migraine take 2 Paracetemol together with 2 Ibuprofen, give them a hour to kick in. Lie in a quiet, dark room if your circumstances allow you to do so. You'll get used to dealing with the pain, it sounds odd but it's true. Humans are very resilent beings and you'll be surprised how you'll adapt to your illness.

    Try to remain upbeat (easier said than done, I know !!). Don't do too much on your good days or you'll regret it a few days later, I promise.

    Hope this helps !!!
  • Thomas263Thomas263 Member Posts: 4 Listener
    Thanks getlegee, I don't suffer so much with migraines but it's the pain I have in my hands, arms, neck and shoulders..... I take it the pain can occur anywhere on the body. Sometimes it feels like red hot searing pain rig t into my bones. Is this pain describing fibromyalga? 
  • chiariedschiarieds Community champion Posts: 6,386 Disability Gamechanger
    edited September 2020
    Hi @Thomas263 - & welcome to the community. Like yourself, I have chronic pain, but due to a different disorder (the hypermobile type of Ehlers-Danlos Syndrome). However there are similarities, in that the pain of my disorder has been most likened to that of fibromyalgia. I also am a physio (tho haven't worked for a long time), so perhaps may be able to help. I'm pleased you're looking for ways to manage your pain more than just painkillers, which sometimes just seem to take the edge off things.
    As we're all different, it's finding what works for you, & often it's a combination of things. With my background, knowing it can help, I use gentle exercise, but I also use distraction, practice mindfulness, use a breathing exercise, & have been taking CBD (for the past 2 years). Here are some links:
    https://ppa.csp.org.uk/content/links-people-pain     which contains further links
    I don't know if you've come across the concept of pacing, but this is very useful with fibromyalgia, i.e. do some activity, then take a break, don't try & do everything at once. This should be practiced on a 'good' day too, so don't overdo things, or you may pay for it the next day!
    Hope this helps, & please chat here any time. If you have any questions, please say. :)
  • gentlegee1976gentlegee1976 Member Posts: 29 Connected
    Thomas263 said:
    Sometimes it feels like red hot searing pain right into my bones. Is this pain describing fibromyalga? 
    It sounds like it, yes. Hope you're feeling better soon.
  • Thomas263Thomas263 Member Posts: 4 Listener
    Thank you all for your advice. Its good to know there are people there to help. 
  • poppy123456poppy123456 Community champion Posts: 22,214 Disability Gamechanger
    Hi and welcome,

    Yes, i also have fibro, as well as a few other conditions. I was diagnosed with it several years or more ago (can't remember exactly when) but it took a couple of years of various tests, many many hospital appointments to finally be diagnosed. I have a terrible short term memory and dates, names etc are my worst thing to remember.

    You will find what does and doesn't work for you. It affects people in many different ways. For me it's wide spread pain across the whole of my body, with my legs, feet, back and hands being my worst.  Heat helps me but cold makes my pain go off the scale. Winter is my worst nightmare and i dread it every year. Hot baths help me during those winter nights, usually i sit there running the hot water. Sitting next to the radiator helps, my heating is on 18 hours a day during those months.

    Pain medication, well for me it's not that affective but then i've been taking various medication for more than 10 years. At one point i was taking more than 30 different tablets a day, now it's down to 12.

    I pace myself throughout the day but mornings for me is the better time. If i don't do what i have to do by around 3pm then i'll never do it after that. If i do too much then yes i definitely know it the next few days. I don't usually do more than my body can cope with and i don't usually cross that line.

    We do have other members that also have fibro. Hope to see you around the community :)
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • SazcaresSazcares Member Posts: 3 Listener
    I have had fibromyalgia for 27 years now and suffer many symptoms everyone is different and  there's no magic cure so trial and error I have been having steroid injections due to go Tuesday yes it's exhausting and painful but does reduce the pain for 6-8weeks it some areas I also have osteoarthritis ,disc issues and Raynaud's so pain is constant so any relief even a warm bath I can't tolerate physio it hurts and makes me worse trying to do excercises for a tendon problem at present but not easy to do I also have morphine patches,oramorph ,diazepam ,paracetamol and pregabalin be careful if you're offered gabapentin it has many side effects I passed out on it and got a prolapsed disc medication is trial and error amitriptyline was good for sleep help,mood and pain I had to come off it myself I hope you can get a regime to help ease things kind regards Sarah also newly joined here.
  • poppy123456poppy123456 Community champion Posts: 22,214 Disability Gamechanger
    Amitriptyline works well for me and does help me sleep. I take morphine also but the patches didn't work for me and i was allergic to them so had to stop a few years ago. Tried many many other medications but nothing worked for me including steriod injections into my spine and had 1 injection and never had another.

    What works for one may not work for another, it's really justa matter of trial and error.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
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