New to this and still learning about fibro

[KirstyK]

Might be a daft question still trying to come to terms with the different symptoms of fibro but does anyone else struggle with severe leg and foot pain and really struggle walking? Does anyone use walking aids?

[Ginsing]

Hi Kirsty yes a lot of us have taken to using aids from sticks to frames and scooters. fibroaction.org will give you lots of information on fibro have a look around

.There are lots of lovely people on this site in the same boat we exchange info and learn from each other. Enjoy the site catch you later xgins

[Jackieblu]

Hi KirstyK I've had this condition now for what I thought ten years but think it had been goin on a lot longer. I'm still linking it all together through muddling my way through all the info that's out there. I've been usin walking aids from the start because aswell as fibro I've got osteoarthritis and I need a double knee replacement. My legs are absolute agony at times and my ankles feel like their about to snap off! I can't straighten my legs out for any length of time,if I do it's excruciating to bend them back again. Their all misshapen aswell with fluid and I sometimes feel bit self conscious! How does it affect you? X

[KirstyK]

Hey thank you for being so welcoming and helpful my gp told me fibro doesn't give you problems walking I was just making it up, so glad to finally find support and people also having the same problem. Thank you Kirsty

[KirstyK]

I have severe pain in my legs and feet all the time, doesnt matter if im standing, sitting, walking or lying down. I can only walk short distances before I need to sit down. Its like the pressure of walking is too much for my hips, knees, legs and feet to cope with. Like I said my gp told me I was making it up so wondered if I was the only one with this problem... So glad to see im not alone on it. Kirsty

[clairethebear in reply to KirstyK]

Hi Kirstyk,

Yes I am the same I feel my legs dont belong to me all the time, its cruel of our doctors to dismiss the agony we go though, and tell us all what we're not supposed to feel etc, let them suffer it for a day, the agoinies of this illness, it would surely quieten them, best of luck take care, Claire xx

[lcm27]

Hi KirstyK,

I've just posted a question on floppy feet. My muscles in my feet when walking seem to stop working and mentally I feel like there is no structure there to hold the bones in place even though I know there is! It feels like a melting running jelly. After a while I will get the sensation back but it is very painful to put my foot down then. Docs are not interested in the least, just smile and nod.

Amongst other pains are lower back, hips, knees and heels. I also find that after walking for a while my hip/knee seems to come out of the socket and when it re-seats it doesn't go in properly and feels like it nips the nerves around the area for about a week after, docs aren't interested, neigther is the physio.

I know how you feel when you say you feel like your body is too heavy for your hips and legs to take. Your doc is wrong when he said you were making it up. My GP is Rhuemo based but even I can teach him a thing or two about FMS. Its not in the mind!!!!

cheers Lynn x

[KirstyK]

Thank you all for your support I feel alot happier knowing im not alone and that what im going through "is real" I have just bought new smart crutches, and have to say really looking forward to them arriving. Its so frustrating that we are all in thw same boat struggling to get health care advice just wish we could all get together and take action. As much as doctors say"its all in our heads" think we would all agree if thwy had a day in out shoes they would soon think very differently! You are all amazing and I feel so welcomed on here. Thank you for being so lovely and helpful

Kirsty

[JaneBG]

Yes I do, it has got worse over the last few months, it feels like the whole leg is aching, can be from walking or I can wake up with it. Dr thinks it's my back but is not the same feeling I get when my back problem plays up so not sure but I think it's the fibro. Have got to ask my cfs physio when I next go x

[KirstyK]

Sorry to be nosey what is cfs physio? do you find the physio helpful? No matter hoe useless doctors are least we have each other for support Kirsty x

[Aisha]

Hello KirstyK, I believe that cfs stands for Chronic Fatigue Syndrome which most of us get with the Fibro! I've been for physio in the past and I find it just aggravates our condition of fibro. Have you been referred to the Pain Clinic as that is where I was referred when I was first diagnosed over 10yrs ago! They understand us more so than the Gp. My fibro affects my legs and feet more so than anywhere else I do have a lot of pain in my elbows as well. You should ask your Gp to refer you to them! I use one or two crutches for help when walking and I find it helps me. Best wishes love Aisha x

[KirstyK]

Hi Aisha, you are amazing!! Thank you so much. My gp mentioned cfs once but that was all he has said about it. I have done alot of research on it and am totally convenienced I have that aswell. My gp has refused to refer me to the pain clinic but after what you have said im definitely going to go back and insist he refers me. Big gentle hugs Kirsty x

[Midori]

Better still Kirsty,

Change your GP! he's not helping you at all. Can you see another doctor in the practice, or is there another practice close by? You have the right to change if you wish.

GPs who say Fibro is all in the mind should be re-educated, in my opinion.

Cheers, Midori

[KirstyK]

Hi Midori, I didnt realise just how bad my gp was until I came on here and realised just how much support there is out there. I definitely agree GPs should be educated on fibro. Going to go try see another gp see if they are any more help. Kirsty

[Jackieblu]

Hi KirstyK noticed your comment about doctors,when I went about my knees and all the other troubles i was complaining about she eventually she refered me to the the rheumatoid doctor where he told me it was fibro I had! On going back to my doctor where i wanted to discuss fibro she had the cheek to say to my face "oh I'm not worried about that" I was flabbergasted and said well you might not be but I am! Just can't get over how matter of fact some doctors can be! Hope you get on ok! Jackiex

[KirstyK]

Hey Jackie, good for you! It drives me potty that doctors get away with their treatment of people with fibro. Their attitude is as if we dont matter we are only a patient number for us to get on with it, doesn't matter its our lifes in their hands. You have really given me faith in myself to take action. Your amazing! Kirsty x

[Zforsyth in reply to KirstyK]

Hi Kirsty

I have just asked a question on here about leg pain where I can't walk which is affecting me mainly at night. It comes on so suddenly some times I think I am going mad and its all in my head. But even though I was diagnosed (at last) last year (I have lupus and CFS too) I still find I question every symptom. If it wasn't for this site I would think I was mad.

I am lucky because my GP is very understanding, and my mental health specialist , my rheumatoid consultant, my occupational therapist are all very supportive. They seem to have an understanding of the conditions. Only problem I have with GPs is that no matter what you go to the doctor with they say its part of your conditions !!! Every ailment is blamed on fibro lupus or cfs. This site has helped me so much and made me see that my legs are a REAL problem . If you ever fancy a chat we are all here

Zoe

[Jackieblu]

Hey KirstyK you just hang in there,when the goin gets tough it's good to know there's someone out there with exactly the same fears and worries as yourself! I'm goin through my lets get tougher attitude just now because it makes me very angry seein good decent people put through the wringer! You hang in there! Jx

[KirstyK]

Hi Zoe, you have made me laugh so much!! That's soo true. I have been attending gastro consultant for 3 years now and they have referred me back to gp who turned around and said I had wasted gastro consultants time as he could have told me it was a symptom of fibro. Couldn't agree more they blame everything on conditions when really they havent a clue if it is or isn't.

I came across this website out of the blue but has made thw world of a difference to me, so many answers to questions I have been asking for months and everyone on here couldnt be more helpful and lovely.

I have just bought a pair of 'smart crutches' which was a bug decision for me but Im just struggling too much to stand and walk. I have total respect for you, i honestly dont know how you manage, yoyr a total inspiration!

Huge hugs and love

Kirsty x