I got my fibromyalgia diagnosis about 4 years ago and I’m constantly in denial- I’ll be honest I really didn’t believe it was a real illness at first but I now know it’s real and I’ve got to get on with it🙈
I hate feeling so wiped out especially when looking after my grandkids I don’t want to be the nana that can’t do things- over Christmas I think I pushed myself a little bit too much, main issues are are muscle weakness pain in back but especially shoulder and neck- constant fatigue and headache but also intermittent insomnia I also get a lot of electric shock type stabbing pains that are so random but exhausting! I hate moaning and really try not but sometimes I just want to cry and have my old life back🙏
Anyone got any tips?family don’t really understand but I don’t blame them as I don’t really understand either 🙈
Thank you for reading my rant and moans- so lovely to know they’re other people out there that understand
Happy new year guys xxx
Written by
Muriellilley
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Denial is common, don't beat yourself up about it. Remember you are still the person you were ten minutes before the label fibromyalgia was pinned to your lapel.
It's hard but sometimes we need to be a little selfish and learn to say no to things if we know that by doing them we are going to suffer in some way. If I know something is coming up and I want to take part, then for me, I take two days off work before the event and two days after. This allows rest beforehand and recovery after. The art of pacing is important to us although I do have to admit that it is still work in progress for me many decades later!
What helps - ahh the million dollar question. Fibro is different for all of us so it's trial and error. I, like many other members, can't cope with prescription meds. I use diet - no processed foods at all, everything cooked from scratch. No I am not wonderwoman. On a better day I cook once and eat twice, so I cook more than I need and freeze the rest for those not so good days when fatigue takes over. I use magnesium (epsom salts) in the bath to help with muscle pain. If you have muscle pains check you do not have low vitamin D as this can cause muscle pain too. Heat helps, so hot water bottles, wheat bags etc. Biofreeze gel helps me too. I also have, when I can afford, chiropractor sessions. Be careful with this though, if you go down this route as it's vital to get a chiropractor who understands fibro.
Trying to get folk to understand - have you heard of the spoon theory, this may help them understand, or google fibromyalgia, letter to the well. This, if they will read it, may help.
Don't be afraid to ask any questions, many of us have either thought it or asked it before and there will always be someone happy to answer.
Hi there, Dinkie has covered a lot! My go to for muscle pain is magnesium, either spray or lotion. Works well for some and does nowt for others but always worthwhile trying imo. First time it might sting but it goes quickly enough so don't panic and wash it off 😂 Welcome by the way 🙄😊x
hi it could have been me writing your post , it’s hard to get used to the new me . I had to give up work nearly two years ago at 60 and I am finding it really hard to as you say be the grandma who cannot play the games take them out for the long walks and days out . Family don’t really understand the extreme tiredness and struggles to cope with this Fibromyalgia ,just had to go back on antidepressants and yesterday finally had to reach out to get help for my mental health as just in bits ,the doctors who I’ve tried to in the past do without were really good understood I’d reach crisis point . So today is a new day .Its hard to realise it’s got to be new me let’s hope new year brings new and exciting things xx
Totally go with what Dinkie said and I love the "Remember you are still the person you were ten minutes before the label fibromyalgia was pinned to your lapel" quote - nicking that!!
Pacing is KEY to survival with FM. I liken it to going on a diet... if you are on a calorie controlled diet and know you have a party or gathering at the weekend you save up some calories during the week so you can "splurge" and enjoy yourself without worrying for a day... and if you overdo it you have to cut down for the next couple to keep inside your weekly limit.
The only hard part is working out exactly WHAT your weekly limit is as it is different for everyone!!
Also like Dinky I've tried meds but have now come off them, although they helped for the first 6 years, I will admit - I now prefer to use alternative therapies, vitamins and cutting down on the processed rubbish and just cooking myself so I know what is in the food I'm eating. I joined a pain clinic (referral through Doctors) and this has proved more helpful that I expected and has given me a local support group as well as the great people on here.
Of course, the "new you" is different from the "old you", but it is not necessarily worse and in some things could be better... I treasure the quiet reading times I now get with my four-year-old grandson and he loves coming to see me as I am "Granny Dee with the library" and he knows he can choose a book (some of which were mine when at his age) and we sit quietly with a hot chocolate, a biscuit and we read. Mummy and Daddy do all the running around and walks with him and I'm quite happy with that!
Hi Murie, I was the same way when I was first diagnosed back in 94. I said I don’t have that. I believed if you wait long enough it would pass. It never did. Then I literally tried just about everything that made medical logic to me that people were saying helped them and even some experimental things. I also got involved with research studies on fibromyalgia in the hopes of bringing about a cure sooner. Thirty one years later I am just too tired and feel that the younger generation needs to carry the torch to promote research on finding a better understanding, treatment and cure for this disease. I have so many times longed for my old life and old me to come back. Even felt like a failure because of all that happened (loss of health, career, loss of financial stability, divorce, loss of my family as I knew it, etc)because of the fibromyalgia it has been hard but trusting in God that he has a better purpose for me and a plan for my life in helping others. I know when He calls me home all this pain, sorrow, tears and suffering will be gone. Oh along with the fog! 🌫️ That will be a glorious day! I just want to encourage you to not loss hope, this is a new year with new possibilities, God has got you. Sending love, ❤️ hugs 🤗 and prayers. 🙏🏼💕
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NUMBNESS IN LIMBS
scunny278
Sorry for this folks
Pip forms
Does anyone feel their fibro is saying something much more serious is going on in their bodies and it’s being missed?
