Ive been diagnosed with fibromyalgia, please advise me...x

[sarah jayne]

After nearly a year of suffering ive been diaggnosed with having fibromyalgia. Although im relieved to have found out whats wrong with me im also very scared because theres no cure for it. I have 2 young children aged 10 and 3 and am struggling to manage. I feel guilty that i cant do things with them that a 'normal' mother can. Im scared that i'll end up in a wheelchair. I have a lovely husband but he works long hours. I also suffer from a health anxiety, ive been having cbt but ive only got 2 sessions left and its not helped me at all. I have some questions that hopefully some of you kind people on here can help me with....

what meds are best for it ?
is there anything i can eat to improve it ?
have you ever been wrongly diagnosed with it ? ( my anxiety lol )
can it make you have random sharp pains (i had an awful one in my chest this am) ?
can it improve in time?
whats the worst that will happen to me ?
Please can you give me your personal experiences....... ?

Thanks in advance
Sarah xxx

[Vixxy]

I dont know anything about the illness, but I have to comment on you feeling guilty that you cannot be a "normal" mother. As long as you offer your kids love and support thats all that matters.
I hope you get some answers to help with the illness.

[NeverRelaxed]

It seems to share a lot with chronic fatigue syndrome/ME...Which I have been diagnosed with recently.

I think for some, It can get better over time.
anti-depressants, pain killers and maybe even CBT are some of the things that are used to treat the illness.

thats all I know really.

[MightyPC]

Hi, I posted sometime back that I think alot of people`s symptoms point to Fibromyalgia. My Mrs has it and it was confirmed by a pofessor in London on Tuesday. There are some very strong Vitamins that they recommend you take. The unfortuante thing is the vast majority of GPs would not have a clue on Fibromyalgia and lot refuse to recognise it, similar to ME. My Mrs had some injections on Tuesday and she feels fantastic, up early this morning like the old days, though these are not available on the NHS and cost about £75.00. She has really struggled since Xmas. If you PM me I will forward to you the information she has.

[JaneC]

Mighty PC, I have cfs rather than fibromyalgia, but would you mind telling me what the injections were? Glad to hear your wife has benefited.

[bellalew]

After nearly a year of suffering ive been diaggnosed with having fibromyalgia. Although im relieved to have found out whats wrong with me im also very scared because theres no cure for it. I have 2 young children aged 10 and 3 and am struggling to manage. I feel guilty that i cant do things with them that a 'normal' mother can. Im scared that i'll end up in a wheelchair. I have a lovely husband but he works long hours. I also suffer from a health anxiety, ive been having cbt but ive only got 2 sessions left and its not helped me at all. I have some questions that hopefully some of you kind people on here can help me with....

what meds are best for it ?
is there anything i can eat to improve it ?
have you ever been wrongly diagnosed with it ? ( my anxiety lol )
can it make you have random sharp pains (i had an awful one in my chest this am) ?
can it improve in time?
whats the worst that will happen to me ?
Please can you give me your personal experiences....... ?

Thanks in advance
Sarah xxx



hi sarha,sorry to hear your news,i understand your wories.i have R\A and that to is uncureable,but understanding it and its symptoms, and how to live and cope can take alot of the worrys away,i came across a site called ARTHRITIS CARE it will explain all about your condition,i hope you find it helpfull.also asking your consultant will help, they will give you losts of advice and answer all your questions,i find it easier before i go to see mine to jot down on paper any questions i have concerning my worries.i hope you feel better once you get all your questions answered.take care.:hugs:.x

[MightyPC]

JaneC, it was a combination of magnesium, vitamin C and B12 and a pain killer called Lithacane. She has been advised to have it every other week.

[anthrokid]

Heya Sarah-Jayne,

I also have fibromyalgia and chronic fatigue, it's a joy isn't it! I've found the best thing for me is heaps of fish oil tablets (I have 6 a day) and magnesium. These both help amazingly with joints and just the horrible muscle pains. It takes about a month for them to kick in, but once they do it's a big difference. When I stop taking them now I can really notice the difference. Any vitamins really will be good for it I think. I take everything!

You won't end up in a wheelchair. The worse that can happen is that you will give up and stop trying and not do anything to help yourself. In this case, if you stop eating healthily and doing things that help you you will feel worse. If you stay in bed all day and don't do anything during the day you will feel worse. I know sometimes it's really hard jsut to get out of bed and to move around, but if you don't you actually feel worse later on. I've been experimenting with that one for a while! Fibromyalgia doesn't actually damage the muscles and joints and any other parts of the body where you feel pain or just icky sensations. What it does is it alters the amount of pain messages your brain is sending to your nerves and makes all your pain sensors so much more sensitive! Very inconvenient. But it doesn't actually do any long-term damage.

Diet can play a massive role with fibromyalgia. I find that when I eat fatty food and really sugary food I feel a lot worse. Also when I eat thing with a lot of artificial colours and flavours. Fruit and vegetables, as boring as it sounds, are really the bets thing for you. And exercise. It hurts to exercise, but exercise is the absolute best thing to help with fibromyalgia. I can 100% garuntee this, I've been doing research papers on fibromyalgia at uni actually since I've been diagnosed. Even just long walks. And a good sleeping pattern is important too.

I was put on amitryptiline (an old antidepressant) when I was first diagnosed, and it helped reduce the pain, but I also suffer from a panic disorder and depression and mania, and the medicine didn't agree with the rest of me. It was good for the pain, but I also experienced a lot of other icky feelings because my body just didn't like it. It may work for you though, I know people who swear by it :)

Give me a message anytime if you ahve other questions. Hope you're feeling okay today!

[zippy]

I also have m.e amd fibromyalgia. I have had m.e for 10 yrs and just recently diagnosed with fibromyalgia.I have just been to the doctors today about my health anxiety and thinking i have cancer everytime i get a new symptom.He is sending me for cbt but i still came out thinking why didnt he check me over or do my bloods but he said thats just feeding my anxiety.I cant accept that the nausea/diarrhea and back pain is due to anxiety.

[Peter_Scott]

Hi,
I was diagnosed with ME/CFS many years ago, it was not easy to get a diagnosis. Yes VITB12 injections and high dose VITC work wonders. You can ask your NHS doctor for these. You can not over dose on B12. It works wonders on things like twitching muscles and also joint pain, but the best thing is it helps with the fatigue. You can get B12 in tablet form but you can't buy any old B12 supplement as only one type is absorbed into the body,Methylcobalamin, you should take 1000 mcg a day to get results. Ask your GP, for help,

Peter

[pb]

Hi Sarah,
Sorry to hear about your diagnosis, I was just wondering how you was diagnosed as im still struggling with joint pain and do not have a diagnosis.My knee is very bad,im going back to my gp on friday.
Sorry i cant offer any advise on how to cope with fibromyalgia.
Pauline x

[sjr1969]

hi, blimey there are more people on here than i thought that have m.e/cfs/fibro.

I was diagnosed as having M.E over 10 years ago and also recently with fibromyalgia. i must say though, there are so so many anxiety symptoms that are the same as fibromyalgia/m.e/cfs that recently i have questioned my diagnosis.

I do know other people with the condition though, from my experience it is manageable, the more you worry, the worse you will feel, i know this from experience. I realise its hard not to worry though. I have 3 children, the youngest is 7 months and i struggle at times. But we do it, because we are mums.

You will be ok, i know its hard. But be strong. PM me if you want to chat.
sarah x

[sarah jayne]

Thanks everyone for your replies, i am going to try everything thats been suggested. I havent seen my doctor since i was diagnosed by the rheumatologist on tuesday so im going to make an app for this week. I'll keep a log on here of everything i try as it might help others in the future.
Thanks again, Sarah xx

[JaneC]

MightyPC thanks for your reply. Sarah, sorry but I had to head out to work just after you started your thread and I don't go on NMP there:redface:

Is your problem mainly pain, fatigue or both? I don't know much about fibromyalgia but I've tried loads of supplements for cfs and one thing that really helped was Korean Ginseng, although I've had to stop taking it since going on an SSRI. A lot of people also swear by co-enzyme Q10.

I'm sorry this has struck when your children are so young. One saving grace for me as that mine are a bit older, although I still feel guilty that I have so much less time for them, especially my daughter, the youngest, who still wants to go shopping and stuff with me when I just don't have the energy.

Apologies if what I have said isn't relevant and I hope you find your GP helpful. There's loads of research you can do yourself though, and plenty of online forums as well. I'll be thinking about you :hugs:

[anthrokid]

Oh yes I take co-enzyme Q10 as well. I take prettymuch everything there is a supplement for! I'm pretty sure I could stop eating and just survive off all the vitamins and supplements I take :)

[sjr1969]

hi everyone, for anyone taking the vitamins co-enzyme Q10 and korean ginseng. Are there any side affects? Do you feel a significant difference in your symptoms?

sarah x

[anthrokid]

No side-effects at all from Q10. It's just a substance your body makes and some people's just doesn't make enough of it. It's an energy booster, after taking it for a while you strangely feel less exhausted. The older you are the less your body produces Q10 so it's really good for middle aged people because it's at that point that your body stops producing it I believe. I'm only 19 though and it's helpful to me :) Worth a go!

[janni]

I really feel for you Sarah Jane, after a year or more of being told I had somatization I was handed a leaflet on fibro by my GP then my psychiatrist agreed...no firm diagnosis by rheumatology. If you look around on net there are many suggestions re: vitamin supplements stretching and pacing + medications. I know how terrible this disorder/syndrome can make you feel and how misundersood it is by non sufferers. I thought it was depression makin me sleep all the time last year now i know it was chronic fatigue. There is hope in feeling better. Look for as much treatment solutions as you can to try keep yourself feelin as well as is possible. Big Hugs xxx

[janni]

My symptoms, pain in back, knees, and muscles everywhere. Breathlessness, Chest pains, Digestive problems...GERD, dizziness, numbness in face, Carpal tunnel syndrome,leg weakness.. the list is endless and there is no predicting what symptoms going to bother me tomorrow or even in next two hours its really miserable and like you I fear what is going to happen to me. I lay down a lot and I dont think it made it better. My friend told me that one of her friends had it and she got on top of it and recovered to the extent that she was out gardening and leading a normal life. Eat well, exercise gently, and dont be hard on yourself. You are suffering xxx

[sarah jayne]

Hi, just thought i would let everone know that ive found a fantastic book packed with information about fibromyalgia. Its called ' the first year FIBROMYALGIA' by claudia craig marek. I havent read it all yet but its been a great help already, its written by a medical assistant who suffers from it and gives information and advice on all your symptoms and the following :
how to ensure you get a correct diagnosis
how to best manage muscle pain
how to cope with ibs
which medications can help and which mght harm
what are the most effective complementary therapies
how to cope with work, travel, and relatioships...
Its like a bible to fibro sufferers, if you havent already read it then buy it and have a read theres all the info you could wish for. I bought mine off ebay for 99p lol
Sarah x

[sarah jayne]

its much better than the crap leaflet that i was given ! x :)

[janni]

Just a book that might help you sarah jayne its called Fibromyalgia and Chronic Myofascial Pain A survival Maunual really cheap for a big book i got it for under £7 on amazon. It's well worth the money and puts the condition in perspective. Hugs

[janni]

lol i just saw you have a book too i havent read that one but ill keep a note of it wishing you better days hun

[sarah jayne]

Thanks janni, i'll be buying the book you mention.
Sarah x