Hi everyone. Today I had a rheumatologist appointment in Hexham (as you know I do not have nice feelings for Carlisle).

I’ve been battling with after affects of the cerebellar stroke 19 months ago now, then carpal tunnel in hands (had operations on both which has helped). Diagnosed with lumbar and cervical spinal stenosis, now I’ve been told I have fibromyalgia. No pain treatments.

BUT, I experimented with my self last Sunday and took 5 mgs of prednisone steroid. I could run up and down stairs 8 hours later do everything normal ish for 22 hours then it wore off and I’m back with chronic pain. Not only with the nerve pain this other pain which is debilitating with everything you do. Getting out of bed shuffling to the Lou, trying to dress and if I sit down it hurts to get up. My whole body feels wracked with pain. It really is getting me down.

I asked the Consultant to prescribe me a low dose of prednisone and she said no as it doesn’t help it causes more damage in the long run and it can come back at her in the future if I have problems.

I have asked her to leave it open so I can negotiate with my doctor I will start at 3 mgs and go to 2mgs in a months time and see where I am pain wise. It’s management and I know it helps as I had polymialgia rhumatica 13 years ago and was on 40mgs steroids 2 mgs which managed over 10 years for pain.
But my ESR level and CRP level was dangerously high back then 59 and 49 instead of under 20.

My levels are 21 now so, all my symptoms are now called fibromyalgia even though I respond to a low dose of steroids.

I know steroids mask disease but it’s odd my body is reacting to all these problems with more pain.

Has anyone else experienced these autoimmune problems and are left with such awful debilitating pains.

Just want to point out I don’t want sympathy, any one in a similar situation I will welcome your conversation.

Thank you for reading kind wishes Loraine


Dear Loraine, as a fellow stroke victim I am so sorry to hear about the pain you are suffering and I hope that a solution can be found soon. I must have been lucky as I have suffered very little constant pain. I do have left hand side limb weakness, suffer from regular cramp and occasional pins and needles, along with regular shooting spot pains, but nothing compared to you. Wishing you a speedy recovery.
Kind Regards. Brian

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Hi Loraine, really hope you can convince the Dr to prescribe the steroids that seem for you. I know they don’t like people to use them long term but as long as you undersrand the risks it should be your choice in my humble opinion.

Sending hugs :hugs::hugs::hugs::hugs:

Ann xxx

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@Mrs5K @brianr24743 thank you both.

Yes I’m willing to accept a low dose 3 mgs going down to 2 and what a difference it makes.

I actually took 3 mgs after seeing the consultant and that’s 7.5 hours ago and gosh I can feel the difference.

I don’t want to live to 100 but time I have got left I want quality and not to be a constant burden. 61 and ticking x


Lorraine, It’s got to be frustrating when a medication can help but the consultant/GP won’t prescribe it for you.

Have they offered any medication? Hope you get something for the pain, big hugs :hugs:

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Thanks for reply @Mahoney yes they offered to increase my garpbentin HA HA HA! Could you hear that from your living room? That’s what my husband and myself did and the doctor was shocked! Such a rubbish suggestion as nothing works as she stated for fibromyalgia. Garpbentin is for nerve pain not tissue burning.

Apparently scientists and doctors are in disagreement with the outcomes. HA HA again mostly women suffer with this. If you look at age of around menopause it all kicks off for some women with autoimmune problems. Have a nice evening x

Oh dear, not very helpful of the doc, hope you find something that works for you

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Shwmae Loraine, I don’t know much about fibromyalgia, reading on the NHS page it says … “One of the main theories is that people with fibromyalgia have developed changes in the way the central nervous system processes the pain messages carried around the body.” So, I wonder if this is an acquired condition after stroke. Since, I know so little about it, I will bypass your remark and offer you sympathy instead. It must be awful feeling such pain everyday, I know that from an injured shoulder, it just gets in the way of feeling content and functional. I hope you have some success with your treatment.

I have just read that acupuncture is one of the treatments used, and also SSRIs. I tried acupuncture twice when I was in my early twenties. It was quite an odd sensation.

Wishing you some reprieve.


@Rups thank you I will take your sympathy as I’m a little low this morning feeling a bit sorry for myself.

The spine doctor had already told me my pain receptors don’t work properly so signals don’t get through. Even said the insulin receptors can cancel too hence people can become diabetes.

I’ve had acupuncture for migraines but one consolation my blood thinners have stopped me having them.

Thank you for your kind message. Best regards Loraine


Hi Lorraine, sorry you’re suffering with pain again. You do seem to be having a pretty tough time lately. Hopefully they will let you have the steroids (but you won’t be allowed in the Tour de France). Be careful though that you don’t overdo things when you get the relief or you will make it worse once it wears off as you already found out. It must be tempting do go a little crazy when you have no pain though.

I guess it’s a bit of a juggling act to get the balance right.

Fingers crossed for you. :crossed_fingers:


Thanks for your lovely words. @Ingo66

It is a juggling act constantly. I will take the low dose but as I said to doctor quality is what I want in life now never mind quantity.

Have a nice weekend :grinning:


Hi @Loshy
I hope you have had some positive response to your situation and needs.
Best wishes. ManjiB

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@ManjiB thank you for your kind words. It’s up and down at the moment loraine

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