Sick to death of being told if I exercised more the pain and exhaustion would be easier! When will the doctor look at the whole me!

When will the doctor look at the whole me and try to understand that it's not that I don't want to help myself. Besides fibromyalgia, I have lower back problems with total collapse disc, modic type 1 vertebrae damage, stenosis, hypertrophy, facet joint problems, and also arthritis in the back, hip, knee, shoulder and jaw (including slipped disc in the jaw joint. Just standing to the washing up, or cook causes me great pain and I start sweating profusely with it. I can't walk far because of pain and balance issues - i have had several falls, so rarely go out anymore. I used to love swimming (in fact I used to do loads of sports) but cant even do this anymore as my shoulder won't let me use my arm for any stroke and the sheer thought of trying to get changed several times a day is just one issue, never mind the practicalities of trying to achieve this in a changing cubicle. I used to love going shopping with my girls, now they go without me because I spent most of the time sitting in cafes waiting for them.

Now having some new health issues and trying everything over the counter I can because don't really want to go to GP with something else, had enough now. Every little thing now just gets me down, my body is not my own anymore!

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  • Yes you are so right bumble- I demand therapies from my gp, I get hydro , I have an occ therapist available part of the hospital pool/physio team and if I struggle they are a call away, it seems to me its a postcode lottery on help, I have had calcium crystal deposits for a couple of years and was left to my own devices (being a retired nurse I had knowledge) I read about it and contacted my Rheumatologist for an appt. I know I should go thru gp but that take for ever,- push in hun, demand what you need, I once turned up at A&E in agony and they kindly infused pain relief. Pain IS NOT ALWAYS FIBRO or ARTHRITIS

  • Oh Bumblebee I do feel for you and know how you feel, i have Polymyagia & Fibro & nerve damage in my back & feet. The same as you, I used to swim all the time but as you say, it's a big chore changing & drying but I have kind of made it lots easier because I Get all my cozzy on before I go under my clothes & i wear a pair of baggy comfy bottoms & l have a loose towelling top which kind of dries the bits I can't get to lol.

    I am not going to go on about excersize cos I know how hard it is when your in pain & fatigued but the best thing is hypnotherapy and just gentle yoga stretches, you can even do a lot of yoga sitting down or laying down. It doesn't have to be anything that gives you pain but it really does help.

    I think when you feel like this, if your like me, I don't have energy to go to the doctors but it is usually best to because you could have your medication changed or tweaked in some way that would help how you feel. I do hope you can get some relief and feel better very soon my friend.

    Luv Jan xx

  • Sending you a very gentle {{{{HUG}}}} dear Bumblebee I am sure we all understand how your feeling. I have the same problems. Standing is agony for me walking is well I can't print the word here.

    But I have to say I do find gentle exercise works to help relax my muscles. It is painful but for me it becomes more painful the less I do . I am a wheel chair user. Have you tried checking out on line exercises for wheel chairs users ? These can be easier and gentler on your body. xx

    Mo

  • Hello Bumblebee

    I am sorry that you are struggling so much.

    It is really important that you do see your GP occasionally as not everything is always down to Fibromyalgia.

    I am guessing that you are in pain? If so, have you asked your GP for a referral to see a Pain Clinic?

    Something I have been using recently is Magnesium Oil. It comes in a spray and you massage it on.

    It doesn't take the pain away, but does take the edge off it.

    I used to go to yoga for 20 years. As I am no longer able to go I have changed the yoga moves into very gentle stretching. It does hurt to do it, but does help to loosen the muscles up.

    I very much hope that you find something that works for you.

    Wishing you a peaceful day

    Lu xx

  • Hello, there are many fibromites who are in the same position as you and it can be extremely frustrating.

    I was told at the Pain Clinic to go on a diet and for long walks. Bearing in mind that sometimes I can barely put one foot in front of another, it is just nonsense advice.

    However you should see your doctor from time to time, particularly with any new symptoms or those which have worsened. If they do not hear from you they will assume all is well and your medication is fine.

    It can be soul destroying to compare the life you used to have with the one you have now, so my advice is not to make comparisons. Look for the positives in your new stage of life, more time to chat with friends, more attention to hobbies, no more worrying about taking the day off sick etc.

    I hope you are able to get some comfort from knowing you are not alone.

    Xx

  • Hi Bumblebee..I feel so sad you are struggling. This past week I learned something new..my rheumatologist said I need to let go of the past..the old me and concentrate on Now. I have had fibromyalgia for 25 years and now osteoarthritis of lower spine..this recent flare is now 5 months and I am still learning. The pain management course was very helpful..learning how to pace. Now I do 20 minutes or more of basic Pilates and basic warm pool exercise..Every bit of stretching or gentle movement helps...don't forget to give yourself praise when you achieve the smallest task! I hope you get relief soon and remember GP stands for general practitioner...go see a rheumatologist.

  • Hi, I have many health issues like you, fibro , hypermobility syndrome, arthritis , chronic fatigue and a few other chronics ! I am also sick of going to doctors, tried every tablet, side effects, so trying to help myself , gets you so down I like you used to swim forty lengths three times a week , can't do any now. Also like many times tried to go shopping with my two girls and two adorable grandchildren, ended up in a state as struggling to lift my feet up and exhausted and whoosy . I totally empathise with you on everything, I'm the same trying to cook etc, people including doctors just don't get it. The only person I've come across who did was the lovely ex nurse who tested me for blue badge She had a spine problem and her sister had Fibro, it was so good to talk to someone who knew just how I felt and how it affected your life. Pity most of the medical profession can't have it for a day I wouldn't wish it in anyone, but how do you make them understand? I think it wears you out so much you can't even be bothered to explain to them. On a positive note at least we have our lovely families I find a good rant does a bit if good, this sites great for that and I end up thinking some people worse off than me! We can't let it beat us!! X

  • Hi Bumblebee

    I am so genuinely sorry to read of your suffering and struggling and I sincerely hope that you can find some resolution to these issues. I am the same as you with multiple health conditions. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • As others have also said, I understand how u feel as I'm in a similar situation, it seems as if things are getting worse and, I used to be able to rest up or fight through, but I'm now too exhausted and pains all over.

    My pains are everywhere, I'm worn out not much sleep so every day I start already, exhausted.

    A few yrs ago exercises and diet weight loss was said to me as well, I and hubby wondered if the person had shares in slim fast cos that's all they went on about.

    I've learned pacing and basically trusting yourself as only you know your body and pain.

    I get frustrated that I can do very little but that's just how it is, I cry to myself and then do what I can.

    Take care hugs x

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