scared im loosing my walking

can,anyone please explain and answer me honestly am I loosing the ability to walk. I was diagnosed 8 years ago with fibro and 10 years ago with RA. My RA is mostly under control now with 4 weekly biological infusions. I have secondary fibro and my legs are getting worse, not only the pain and none sleeping at nights, but I am now struggling to walk in a day without severe difficulty. My legs are very weak and constantly hurting now. I retired 2 months ago after 40 years of an active role as a manager but finaly could not continue due to my health. I percivered for a long time because I am not one to give up easily. But this is now realy scaring me.

19 Replies

  • Hi I truely understand what you mean My legs are getting so weak. my knees keep giving way and the pain in my ankles and feet are other joints .I do get scared at times .Hugs sent to you xxxxx

  • Sorry to hear this but you can improve, I found a stick helped . I did improve and so can you. Gentle hugs

  • Thank my legs are doing my head in though.y. ou, I already use a stick have done for 4 years due to my RA

  • I was going to say that 20 years ago I needed help to get from bed to the bathroom and now on a good day I can walk for 10 - 20 minutes but then I thought you would ask me what I did and I am not really sure.

    Getting thyroid under control, also vitamin D levels and stress reduction have I think been the main things.

  • Hi Cathy21,

    Sorry to hear that you are in pain and struggling with walking. Do you have a occupational theripist and OR Physiotheripist? They can help with finding the right walking aid for you and also with gentle exercises.

    If not, pls get in touch the local social work department and they will be able to offer you help. Someone will come and access your needs in the house. You will receive this help from the NHS. Don't be afraid to ask for help :)

    There re many services out there, use your internet to find some addional help.

    Go back to your GP and show your concerns, they may be able to refer you.

    Swimming is also good for strenghtening the legs, you can just paddle about in the water, that's what I do. I also have just bought a folding exercise bike which was recommended by my Chiopracter. I have wobbly knees and the bike helps to strenghten them without exerting the rest of my body.(not that I'v got much too exert) ha ha.

    I do hope this helps you Cathy. Pls let us know how you get on.

    If you need to chat we are always here for you my friend.

    Lol Elizabeth xxxxxxxxxx

  • I have had difficulty walking, my legs are weak and because the muscles are weak I over balance a lot. I use. Walking stick because of OA in my back and knees which helps a lot. I had an osteopath for about 8months, I stopped going because although it helped with acute pain, the chronic aches, neuralgia and fatigue were the same and she was getting too familiar. However, I did take on board that I need to exercise my muscles in my legs especially. I try to walk as much as possible and do a 30 minute walk at least once a week. I also have a ball, are they called Exercise balls? Anyway they strengthen the bottom which helps and I have exercises which I know would help, if only I felt up to doing them! Hope that helps. I forgot to say that I went to th swimming pool twice a week for 30mins. I am not a great swimmer, I did exercises and breast stroke but it made my back and neck pain (from OA) worse so I have stopped going. It did not help th FM.

  • HI, I share your feeling, I was an active medical representative working for the biggest pharmaceutical company and very active walking every where selling product for RA/FM funny thing was I was diagnose FM 15 years ago, then I did not listen what my gps advised me to do to take it slowly and accepted my condition, so mine getting worse and worse, in the end after trying so many medications, mine getting worse, I ended up unable to walk and house bound, i have to resigned from worked, now I can even walk properly..but I refuse to be on a wheel chair, because once you do that, I feel that will be the end of me, so I struggle, but I keep walking with my two crutches, I am not trying to scare you.., but keep active.., do massage, accupunture, keep active but know your phase and accept your condition, I hope thats help

  • I know what you mean. I have fought to walk. I have a problem just standing up for very long. In my youth a 50mile bike ride was an average day. Now forget the bike. I was a cook for years now I can't fix a meal without setting down. I have finally accepted (recently) that a mobility aid is a necessity. Believe me I cried for weeks over that. So stay strong and do your best that's all you can ask of your body.

  • Hi Cathy21, i was diagnosed 5 years ago with fybro and my walking is now very painful, i keep pushing myself but why i don't know as i just end up in more pain, i now use a mobility scooter nearly all the time.

  • All I can say is I have been experiencing the same. I was diagnosed 7 years ago. It has now got to the point that I am applying for ill health retirement from my nursing career, I can no longer work any of the shift patterns. I'm struggling to get my head round the fact that I'll be retired at 45.

    I have qualified for PIP high rate mobility and care. Looking forward to getting my mobility scooter.

    It takes a long time to come to terms with what this illness (2 in your case) does to the body.

    I hope that you get some relief from the pain soon and your mobility begins to improve. Have you seen your GP or consultant at the pain clinic? .

    Gentle hugs ((((()))) Becky. Xx

  • Hi I took ill health retirement in march this year. It was hard even at 56. I to have the higher rate care component and living allowance, I transferred it to a motobility car. I have also just been awarded ESA from works and pensions whilst I await the descision from my pension board as if they are going to grant me the ill health pension. My GP is very supportive and pain relief I have but has you know doesn't realy touch fibro pain. I have to be carefull what I take has I have 4 weekly infusions of biological treatment for my RA plus other medication for ra. I have been to pain clinic but to have the drug he recommended would conflict with my RA treatment.

    Thanks xx

  • I am so genuinely and sincerely sorry to read that, and I want to genuinely wish you all the best of luck with finding the answers that you so desperately desire and deserve. I personally use a tri-walker as my walking and balance is atrocious these days. I truly believe that everybody's experience of Fibro is different and so is the severity.

    All my hopes and dreams for you


  • Sorry to read about your difficulties. I have had ra since childhood and fibro 15 years, what i found most helpful was hydrotherapy, physical exercises in warm pool with physiotherapist. This slowly builds up your muscle strength, which you can then continue in swimming pool yourself. Even just walking in water builds up the legs and means you can stand/ walk for longer and with with more confidence. Also using a scooter when outside can conserve your stregnth so you can stand to cook etc later. It conserves some of your depleted energy. All the best

  • Thank you for the advice. I would realy like to go swimming my husband keeps recommending this. But on top of everything else I have a personal problem with putting a costume on, I used to self harm many years ago and tops of my legs are scarred with writing with sharp objects. I do have a wheel chair but in my head feel like ive lost the fight if I use it. ive spent so long trying to fight my way through RA and fibro and I felt such a failure when I had to retire couple months ago fron a job I loved and done since I was 16. I always said that I wouldn't let what I have beat me and now I feel like it has won. I am in quite a despair at the moment.

    I apologize for spilling all of this out, not used sharing fibro and personal stuff.

  • Hi Cathy

    I read with sadness your difficulty wearing a swimming costume.

    I was wondering if you could get some gym/running type shorts that you could swim in?

    I can picture in my head what I mean, but am having trouble describing them.

    Just a thought

    Hugs Lu xx

  • I will look into that thank you, very sorry for spilling all that out didn't mean to. I have took other advice and I have an exercise bike coming today and will try it and see what I can do, its a start and wont be a waste because my hubby will use it.

    Hugs back at you x

  • Please don't apologise. That's what we are here for.

    We all suffer in different ways, but at the end of the day we have the same illness and understand.

    I bang on about (not limited to Fibro) unless you have experienced something how can you empathise or understand what the other person is going through?

    It's so easy to say I would do this or that. How do you know what you'd do? You don't.

    Sometimes we need to talk and just let it out.

    I've had this darned illness for over 30 years and I'm still learning.

    If we can't offer you an answer we will send you a hug to keep you going.

    I'm so glad you've received some good advice.

    Keep talking to us.

    Apologies for my babbling 😳

    Special gentle hug for you

    Lu xx

  • Thanks again as embarrassing has it is I don't have friends, but aquaintances. Ive never felt normal and don't trust easily due to my and what happened to me and then getting my illnesses just compounded everything. Im not dowdy though, I am a positive person and don't give up easily, just struggle sometimes, im sure just like everyone else.

    Thanks for the ramble didn't think it was. xxx

  • It's strange, but I find it therapeutic being on here and chatting to people.

    It's not as good as chatting face to face obviously but almost as good 😊

    I'm around most days if you fancy a chat

    Lu xx

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