Devastated : Hi all really don't know... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Devastated

11 Replies

Hi all really don't know which way to turn as so upset

Since august last year I havnt been able to walk properly ( very slow and shuffle )

At first I was diagnosed with fibromyalgia .... I have terrible pains in my legs and lower back and just very low energy.

After seeing another doctor she said I didn't have fibromyalgia and sent me to hospital where they discovered I had 2 slipped discs...

I asked to go to physio to get me walking again .... I've been twice..

On the first visit I felt the physio was offish with me but he did give me a couple of exercises to do .... when I went back for my second visit he said he couldn't help me and that my slipped discs were to high in my back to affect my walking ( still felt he was offish with me and didn't even like me )

Went to my doctor yesterday for a sick note and asked about what the physio had written and basically he told her I was putting it on and there was nothing wrong with me , I just burst into tears ...

Every day has been a real struggle for me since my legs won't work properly and the fact that he is saying I am putting it on has devasted me I just can't stop crying ... I went there for help and this is what I got ... has anybody else had problems with health professions ? Just feel like everything has got a whole lot worse as before I was self employed loved my job which I miss terribly and now this .... any advice I would be greatful for ... many thanks x

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11 Replies
Miss68 profile image
Miss68

Bless you Hun, I’m so sorry that you’re suffering in this way. I can empathise completely.

As a health professional myself I can’t begin to apologise for the way you’ve been treated. I can assure you that we’re not all the same. I’d be appalled if I treated anybody in this way! In fact I’ve been treated in a similar way by a physio too. He dismissed my nerve pain and the neuropathic pain associated with it. He said it was just a few muscular aches and pains that I had, that there was no reason for me to walk with a crutch and if I didn’t stop myself doing exercises I’d be walking like everyone else! I’ve got a benign spinal tumour and I’ve had numerous surgeries for it, including nerve decompression surgery! Every physio I’ve had the misfortune to come across has thought they were above everyone else. They’ve made diagnoses to the detriment of the patient.

Like you I also struggle to walk. Do not let this physio upset you. He really isn’t worth thinking about. Only you know how much you’re struggling and how much pain you’re in. I know you’re suffering Hun so please don’t cry. I lost my job because of my illnesses and I loved my work too.

Just remember that you’re health comes first. Take your time getting better, don’t overdo things and lots of love and hugs to you lovely. Feel free to talk anytime you want to Hun xx🤗🤗

in reply to Miss68

Thank you so much for your lovely reply it has made me feel better ... I too have lost my little cleaning business that I built up over 5 years which I absolutely loved ... I physically couldn't do it which still upsets me now... I dont leave the house on my own as get so anxious because my mobility is so poor ...so to be told I am putting it on absolutely crushed me .... thank you again for your kind words they have made me feel better xx

Miss68 profile image
Miss68 in reply to

Yeah I’m pretty much housebound too Hun. I only leave the house for doctors and hospital appointments or if I’m going to see my daughter and grandson.

It’s totally understandable that you were crushed by the insensitive words uttered by that poor excuse of a health professional!! Put it behind you now lovely xx

elysiaj profile image
elysiaj

I've had a similar experience. I've had widespread pain in my body since childhood, particularly in my leg joints and my parents were told it was growing pains. then as i finished puberty the pain actually increased (as there were more stressers in my life). As my GP could no longer put the pain under "usual growing pains" as it had made me bed bound on a multiple occasions, he then went to misdiagnose me with 6 different disorders before telling me that there was nothing wrong and i was just overreacting even though he was treating both of my sisters for the same issues. It took me moving out of the county for university this year to finally get some help, a diagnosis and a referral to pain clinic. You are not alone, you just need to find one good doctor or physio to set the process in the right direction

in reply to elysiaj

Hi elysiaj sorry to hear that you too had problems with the health professionals believing you it's really horrid but glad you at last got help you needed ... know I've got to just keep going and put yesterday behind me ... thank you for your positivity 😊xxx

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

Hello there I'm so sorry to hear you have been treated this way by professional people who are paid to help and differently should not be making you upset this way , so have you fibro ?? As different opinions must be very confusing for you , at the end of the day you would like to know either way. I don't know if you could change surgerys ?? What you need now is a good doctor with a listening and patient ear, then next step another physio, why would you make up pain my lovely . A lot of members have had to give up jobs it's a great shame I'm hoping as I can see already some lovely replies from our members will make you feel like you can share and know people are listening . Let us know how you get on if you would like to lock your posts so only our community can see and not open to any other thread here's the link healthunlocked.com/fibromya... Xxxx

in reply to YASMINTINA

Hi yasmintina thanks for your lovely reply .. I was diagnosed with fibromyalgia when I became first ill and then they said I wasn't ( my partner believes I am ) I do have an appointment with a spinal consultant in march and one to see a neurologist in April so hoping they can help ...thanks for the advice about locking my post I think I've done it now lol ... xxx

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

Thanks for replying back to me hope you get some answers in March and April , hope to see you about on the forum love yasmintina xxxxx

Hi there when your in pain going around in circles doing you best trying to get yourself mobile you need positivity from professionals as for his opinion all it’s acheived is upset tears and frustration you mention discs diagnosed by a scan did you see a rheumatologist as you got one doc saying you have fibromyalgia and another not ???a referral back to rhumatologist will confirm this as for you physio I wouldn’t give him the time of day you can ask to see another there or elsewhere there are options of hydro pool warm pool course of 6 acupuncture all within physio dept

Explain to your gp there’s an option of pain management who also have a physio dept with all the above

I can remember the physio trying to put me through a low impact aerobic class that landed me in bed for 4 days you know your body best the pool makes you feel 20% lighter there’s no reason why this is not available to you none keep on at you doctor

There are lovely medical staff and Unkind indifferent

Please don’t give up x

in reply to

Hi sjsl I did see a rheumatologist in the beginning who said I more than likely did have fibromyalgia but my doctor said after my MRI scan I definitely didn't and took it off my medical notes so everything is so confusing... so now will see what the neurologist and spinal consultant says.... thank you for your lovely reply .... on the upside I've just checked my bank and have a payment from pip even though I haven't had a letter to confirm I've been awarded it yet ... so this has made a rotten day into a much more positive one ... thanks again for your advice xxx

in reply to

Fibromyalgia can not be detected on mri 100%

Both rheumatologist and nurologists both can diagnose fibromyalgia and there opinion holds a lot more weight than any gp I’m so glad you got your pip and your upcoming appointment will give you a lot more answers with your pain

Will be thinking of you don’t ever stop asking to get some quality back into your life

Sam x

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