Diagnosed with Fibromyalgia at a young age - How do I cope?

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I was diagnosed with Fibromyalgia at the start of the year, not long after turning 18 and was pretty hard hit by it.

I've been on umpteen medications and nothing has worked so far and my pain is getting progressively worse. I'm struggling in my work place (Which has caused friction with staff members) and in my social life as I feel like I can't go out and enjoy myself because my pain holds me back, so I havent really be able to do any teenager/young adult type things.

I'm also worried about what the future holds because since I was diagnosed quite young, I have a life ahead of me of dealing with this, and I don't know what difficulties that entails, and quite frankly it scares me.

If anyone has any ideas/suggestions/ways of dealing with their fibromyalgia that they think could help please let me know! I'm also willing to try alternative ways of managing it such as CBD Oils and whatnot.

Many thanks in advance!

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  • Posted

    Sorry to hear your suffering so bad. I was 25 when my pain started and its not nice, you do feel like you are being robbed.

    I also tried many medications and none worked or made things worse for me. I also tried CBD oil which didnt do anything but I only used it a couple of times. Maybe it would work if you use it for longer. I also tried millions of supplements and lifestyle changes.

    The best things that help me are as simple as they sound eating healthily although it takes a while for this to have an effect and doing pilates. Its not a cure all and you have to do it regularly but it has helped me a lot. I have a pilates reformer which you can pick up cheap off ebay if you but "aeropilates" brand name. There is also videos on you tube I do but you have to be careful choosing them as some are very tough. I can send you a link of one I think is gentle if you would like?

    I didnt want to get off my butt at the start, like first few years, why would you when your in agony, i just wanted to lay down and sleep but honestly I have found it helps. I avoid yoga now as I think that aggravated me. I think im quite flexible for someone who has never done anything for it so i think some of my issue may be hypermobility.

    The other thing I would say is they are very quick to give out a fibro diagnosis these days and i think the GPs can do it now. i found being young and female the drs can brush you off so if you haven't already make sure you see a rheumatologist and get blood tests to rule out other things.

    I assume they have checked the following, if not might be worth asking for them:

    Inflammatory markers ESR CRP

    Kidney/liver function

    D3, B12, Folate, Iron, Electrolytes

    Thyroid

    Lymes Disease Test

    Blood cell counts

    ANA, autoimmune profile

    Cant think of anymore off the top of my head but Im sure others will tell you.

    The other thing I would think about is contraception, are you taking any? I wonder if there is a hormonal aspect to fibro as mine came on shortly after having my son. I also flare alot before menses so maybe if you are taking one you could see how you feel without or if your not perhaps you could try one to see if it makes any difference to you.

    Try not to give up, I get really angry at times (on severe days) at the Dr's, at the world, at myself but then you will have better days where you feel somewhat normal and wonder why you were so upset the day before.

    Oh one more thing that helps me on severe days is diazapem, BUT you will probably struggle to get this from your dr as it is addictive and they do not like to prescribe it for more than a week however i spoke to my GP and told her I had some at home that I take maybe twice a month when i have been in severe pain for days and can no longer take it. She said on that basis she would be happy to prescribe me some when i need some more. If you can explain to your GP you want 1 weeks worth and will only take them occasionally they may be happy to prescribe but make 1 weeks worth last a few months. If i take them daily or too often i get rebound pain anyway so they are the emergency only drug for me.

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    • Posted

      Thank you so much for such an in depth answer! And I get how you feel entirely! It's just the fact you have to motivate yourself to do these changes despite the pain and on bad days it's like why do I bother?

      And yeah, I spent nearly 2 years waiting to find out what was wrong with me and they did tests for all of the above and I was getting so distressed before the diagnosis as we didn't know and couldn't do anything to help it.

      I used to do yoga a lot and I found it helped (Pre-Diagnosis) and that it relaxed me so I see what's going on around but finding things like that up in the highlands is pretty tough.

      But thank you so so so much for your help! I will definitely take the (morderate) exercise and healthier eating on board as they aren't my strong areas at the moment either!

      Thank you so much ❤

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  • Posted

    hi Becca first let me say I am sorry you have this. please make sure you have had a second opinion as doctors like to diagnose this when they aren't sure what you have. sometimes lymes and other things mimic this. for me one Doctor says I have lymes arthritis and another says I have fybromialgia. I have tried many medication but I find all have bad side effects I did try the CBD OIL AND THCA oil and for me they didn't work but I know others that it did help so I reccomend you try less side effects for sure. also mild exercise does help, walking, water excersise. . DON'T GIVE UP keep trying things even diet change may help. good luck and God bless you.

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    • Posted

      Hi there! I know, it's such a difficult thing to get right and diagnose but I have been through umpteen doctors and specialists and after all the tests, bloods and whatnot, they've all agreed on the diagnosis.

      Yeah, my medication I have just now makes me incredibly disorientated which obviously affects my work and driving and social life so I thought I'd ask about the CBD oil before I bought it.

      I was looking into the Puffin Pool (Heated Therapy Pool) to exercise in as I've heard it's brilliant for pain.

      Thank you so much for taking the time to reply! And God bless you too ❤

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    • Posted

      Hi Beccy,

      Did you go through any trauma in your life??

      As I read fibromyalgia affects most who had trauma or chronic stress in life. Either physical trauma or mental trauma leads to fibromyalgia.

      My pains started after panic attacks and 3 months of neurological symptoms like headache, numbness, tingling, heavy legs, ants crawling feeling, cold water running sensation. now almost all if them resolved. Then came pains starting this Jan. My pain areas are thighs, near knees, biceps, hips.

      My painful area is thighs. I have pains like 15-20 days in a month pain level ranging from 3/10 to 5/10. There are good and bad days.I work full time and love my job. I am afraid of not being able to work.

      when I am outdoors my pain is negligible at work. At home I get more pains.

      I am not sure whether what I have is fibro or chronic anxiety related pain. I also suffer from health anxiety and OCD.

      please be brave. I am with you.

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    • Posted

      Hello anxious dove your comment was interesting to me because I hadn't seen where fybromialgia was caused by stress but attacks and flares triggered by stress. I definitely have been a very, anxious stressful person my entire life as well as battling depression. what are you using for pain control?

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    • Posted

      Hi there Anxious Dove - I have, mental and physical trauma/ stress and many of the appointments I've been to and information I've been given does state that past trauma can trigger fibromyalgia. I had my kneecap shattered horrifically when I was younger and it was never fixed or healed properly and I've suffered severe mental health issues the past 5 years so I definitely think that played into it.

      If you're worried about fibro (or anything like that in general) I do recommend you go to the doctors as it's always better to be safe than sorry. And I'm so sorry to hear about all of that happening to you, it's absolutely horrible but if you're worried definitely get it checked out to reassure yourself.

      All my best is with you and stay strong ❤

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  • Posted

    I am sending you a big hug from an old Fibro sufferer. Life does go on, but changes may have to be made which may actually lead you into a different happier lifestyle than the one you have already planned .

    Because you are so young, I truly hope that you will get over it as some people do.

    The best advice I was given (a year after diagnosis), was to think back to all the stories and things I really loved to do as a child and maybe change my lifestyle to do some of those little things again. Fortunately for me I got joy from doing little things.....watching butterflies, studying ants etc. That is it I thought, I will go to University, go sit in the jungle and do scientific research and do something I really love. It would take a lot less energy than the career path I had drifted into as a teenager. less stress, more enjoyment.

    What I am trying to say is, do things that you really love to do, to keep yourself mentally happy, but take care of yourself physically. Don't push your body beyond its new limits. If you dreamed of being an Olympic marathon runner when you were 4, you could be in trouble. 😃 Don't stop doing things you love, just do them wiser within your limits.

    Take care

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    • Posted

      That's so wonderful! I never thought of anything along that line, I've always tended to focus on the physically aspect of it - I've always wanted to work with animals so I think I'll go have a locally to see what I can do.

      I guess you just forget these kinds of things especially as you grow up because you've got to focus on everything else.

      Thank you so so much though! I'm definitely going to have a look into it! ❤

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    • Posted

      P.S. this can be a wonderful site to go to, to get support from people who do understand what you are going through. It is sometimes hard for others to understand as we usually look healthy. 😃

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