Hi, I've been i'll for about 3yrs and was diagnosed with Fibro about a year ago. It affects me very severely and I can only walk a very short distance and stand briefly and have to use a wheelchair to leave the house (thats on ok days on bad ones I can move at all).
I try to eat well and rest and I do 4min yoga in the mornings on the days I can bear it and doing this is helping me to manage and cope with my symptoms better, but its not actually helping me to get any better its just keeping them at bay.
I've spoken to the Doc and they said what I'm doing is good and I should keep it up but I shouldn't expect to get any better. I'm only just 30 and am finding it hard to acept that I might spend the rest of my life in so much pain and in a wheelchair. Has anyone else been in a wheelchair at one time and managed to improve enough to stop using it??? And is there any thing else anyone thinks I should be doing to try to improve things??? Any help would be very much appreciated as I'm feeling very lost right now.
Thank You
Written by
Jessy
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I can understand how you feel and I don't think I can help as I feel I'm getting worse atm but I do think it is possible to get better (not cured) but I know it is difficult and I would ask to be referred to a pain clinic??
Thanks for the reply, nice to know I'm not alone xx
Im AFRAID i DONT KNOW THE ANSWER, iM WAITING FOR A WHEELCHAIR AS MY MOBILITY IS COMPLETLY SHOT, I CANT WALK DUE TO THE PAIN IVE TRIED SO HARD TO GET BETTER BUT I KNOW IM GETTING WORSE, IM IN MY 50S SO MY CHILDREN ARE OLDER, NO ONE HAS EVER GIVEN ME ANY ANSWERS, BUT IM BEING HELPED TO TRY AND COME TO TERMS WITH THIS ILLNESS, IM GOING TO A PAIN CLINIC ,IM HAVING A CARER ETC I JUST GOT TO ACCEPT THAT MY LIFE WILL NEVER BE AS IT WAS, IM NOT DOING TO WELL AT M,I WOULD LOVE MY OLD LIFE BACK ALL I CAN DO IS SEND YOU LOVE AND HUGS
Thanks for the reply, I'm sorry to hear your getting worse but glad you have some help, It's nice to be able to talk to others who are it the same boat :o) xx
Hi thanks for the reply, when I first got i'll I was sent to a neurologist who thourght I had something else and when it turned out he was wrong he was very unpleasent with me and humiliated me infront of a room full of 6 other doctors, since that experience I've been very reluctant to see anyone else.
I visit my GP maybe once a year for my prescripton for pain killers and I was refered to a CBT who was helpfull but its been a year since I've seen him as well now, and thats it, the medication I can take is lmitted as well as I have very bad astma and a lot of things seem to agravate it to a dangerous level.
I am lucky that my husband is very understanding and looks after me and my sister too who is only 13 and has lived with me since she was 4 (due to family prob's) helps me a lot aswell. They alawys say its ok and they know its not my fault but I feel so guilty that I affect there life so much.
This site is great and I can see myself using it a lot, Thanks so much x x
Hi Jessy, sorry to hear you are wheelchair bound atthe age of 30. I am 35 but not in a wheelchair, however try everything possible to keep me going. One of the biggest problems I have found with FM is that when you become inactive everything seems worse. I was a very active person and now I have quite bad muscle wastage. I do yoga and I have to say it helps me massively. It is starting to build my strength up again.
It's fantastic to hear that you do yoga in the mornings, could you attend a group session. You may be able to find a chair yoga teacher and doing it in a group may help?? Just a thought??
I would def get your meds reassessed.
how about meditation? Have you tried that?
A book called " trauma" written by professor Turnball is suppose to be very good. i haven't read it yet, however Lynn, one of the Directors of fibroAction recommends it and has been to one of his talks he does. I am hoping it will help me so it may help you??
Also do you know if there are any support groups near to you? Speaking to others can help, however try not to surround yourself by negative people as they could pull you down. I have to say this site is amazing as the negativity is limited and everyone is here to support each other. On some sites the amt of negativity i have come across wants to make me slit my wrists. Positivity is the key to well being xxx lots of luck and hugs xxx
Thanks Rach one of the things that really worries me is that not moving enough will make things worse its a hard situation as its not just the pain but I have problems with my balance and my legs just give way I stayed out of the chair for a while but I fell so much cutting and brusing myself and hitting my head hard enough to get concushion, that for the sake of my family (esp hub who has to pick me up) I had to stop pushing myself that hard.
I think I need to find an inbetween that'll build up my strenght but not hurt myself I've never heard of chair yoga but that sounds great so I'll definatly look into that, thanks for the advice I really appreciate it and agree this is the most positive site of any I've looked at xxx hugs xxx
Will you be cured of Fibro? Probably not, it's a chronic condition. Does that mean you can never improve? Certainly not!
I was in a similar way to you aged 25/26. I walked with a stick, used a mobility scooter, sometimes a wheelchair. My GP told me there was nothing to be done. She was wrong.
I'm now 31 and have been in remission without medications for 2 1/2 years. I've only had a few minor short-lived flares in that time and usually have no Fibro symptoms on a daily basis.
You need to get proactive, educate yourself, become an expert patient and take charge of your healthcare. If you do, the prognosis for improvement is good.
Hi thanks its good to know that others have improved so much so I wount give up and I'll try to follow your advice and all the other great advice on here xx
i cant add anything else - but i do want to send you some sunshine.....................................................................................did you get it!!
crikey - i must be a white witch! the weathers glorious!! take care n have a great weekend. i have my daughters 10th b'day party this eve, that'll mean plenty of martini later on for me...!xx
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Will I ever get any sleep.
Trust me it will get better she said !! 😡
Do you just get forgotten about
see if you can make sense of it or what can i do
I know all the answers....but I just can't cope!
