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

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.

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.

I will private message you and tell you what i take ❤

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

Hi,

I was diagnosed with fibromyalgia in 2014, when I was 14, I’m now 18, I struggled quite badly during my GCSEs and A-Levels, but since I’ve left education, the lowered amount of stress has significantly eased my pains.

My best suggestions for pain on the go would 100% be a TENs machine, they saved me whilst I was at college, and also heat pads.

During the nights I used a Hot Water bottle, and spoke to my doctor to get some muscle relaxants, to prevent the restless leg syndrome.

I also find keeping my mind occupied with different things helped me to relax because my pain got worse the more I thought about it.

Another thing I have used is acupuncture, which gave me what felt like 3 months of freedom, before the pain for bad again.

I completely understand with the social life aspect of it, especially being 18 wanting to go out clubbing and drinking, my best suggestion is just to make sure you don’t push yourself too much, for me, I always make sure I leave myself a day to ‘recover’ as I say to my family, basically, I give myself a day so I can wake up at the time my body wants to, and don’t push myself too much, on days like that, I would recommend no matter how much it hurts, try to get out of bed, even if you go downstairs and sit in your living room, just getting out of bed is progress!

I think no matter how frustrating it can be, I would recommend trying to plan things a little bit in advance (if your pain in worsened by stress/anxiety) as the lowered amount of stress going out, knowing things are planned out a bit helps.

I would just keep in your mind that even though almost a year, feels like such a long time, it will take a lot longer to work out what things work for you, you will have highs and lows, but you will be able to find a balance soon.

If you don’t mind my asking, are you in job at the moment, or education? Also, do you have a good doctor, as this can be a huge thing, the doctor that I see will listen to me and help me to experiment with different referrals and medications!