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
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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
I agree and u can get magnesium bath salts I think they're gr8 too 🥰 sorry for jumping in.... I usually go for a bath when I can use the magnesium salts in bath then use the spray but there are so many types of magnesium. 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!
That is sweet. A few months ago I was advised by a couple of friends to drink 2 teaspoons of turmeric in the morning for tennis elbow. Now the elbow is better and instead of dreading drinking turmeric I do it for pleasure. 🤣
yes, Turmeric, Vid D and Lions Mane are now in my daily repertoire, along with CBD drops at night, with my only prescription meds being pantoprazole for my "lack of gall-bladder" caused esophagitis. I soon know if I've missed taking any of them!
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. 🙏🏼💕
Hello, I get your frustration I too have grandboys 8 and 10 years old. Sometimes my daughter will not say if we are due too go out or Nannie is cooking our dinner today, it’s literally arranged on the morning now, having Cfs and Fibro I’m literally doing life day too day , I’ve learnt too say no too people (hated that )but now I’ve took so much pressure off myself. I tick a lot of your symptoms so I empathize, I managed Christmas, day That was brilliant as I did the dinner but Boxing day we left blank this year good move as I slept threw the day ,payback as we call it here. I will not lie there are days I do actually have a good cry too let feelings out and if anybody can understand the lovely members here on this forum can. Xxx
When a Dr first said that she thinks it's FIBROMYALGIA causing my CONSTANT feet pain I didn't want to believe her even though it made sense and almost ALL the other signs were there 🙃 especially the fibro fog! That one still bugs me most. I just had "tennis elbow " for over 2 months and thought it would be just my luck to have it for over a year (I have become GREAT friends with "Dr.Google" after DESPERATELY searching for other reasons for the FIBROMYALGIA related pains.) Anyhoo I digress. The reason I knew I was recovering from the "tennis elbow" was I started feeling that constant feet pain again 😫 but it has become like an old friend. The pain I was feeling was so extreme and ANOTHER thing that really has no cure. Acceptance is difficult but you WILL find MANY things that people can do to make it more bearable like yoga, meditation or just trying anything new that could possibly take your mind off it. I spent many years on drugs and alcohol and realistically I SHOULD be dead, but I am not and even though I get depressed at times EVERY DAY is indeed a gift. My mum now has Lewys Bodies (Alzheimers) which causes her to hallucinate more than see reality. We had to put her into a care home just before last Xmas. Fortunately she got to see me get sober and get a lovely girlfriend and dog. She doesn't know about the FIBRO. She is just happy that I got my life back together. Yeah it sounds like a sad story and I am tearing up as I write it, BUTT MY POINT IS... we really don't know what is round the corner SO TRY your best to enjoy each day, some are MUCH harder than others BUTT try to make the best of each of them. Your grandkids don't need to know what is wrong with you and I am sure they bring you great joy. If I could I would honestly take them electric shocks for you when you are visiting them and I know how much they hurt. Corrective text changed that to electric socks!(little things like that make me smile and feel better, besides with my feet I probably wouldn't even notice) I also know that butt is spelt with one 't' butt again it's silly little things that make me smile. Escapism of any sort that doesn't hurt anyone else is good. One of my favourite activities is LIVE MUSIC, and I can sometimes stand for 2 hours without even thinking about my feet. Plenty of good guided meditation on YouTube and I also find they have a lot of Audio books too(my favourite way to get to sleep now, insomnia was the start of my drug abuse) the "Tao of Pooh " by Benjamin Hoff has helped me greatly with the way I look at life. And of course people here will always help you through the bad times. Here's hoping this year is better than last, for ALL OF YOU. You can still say Happy New Year to people in shops, the street...they like(often NEED)to hear it. 😜
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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?
