Hi everyone, since all my other diagnoses carpel tunnel in hands ( already operated on) lumbar and spinal stenosis confirmed. The problems after my cerebellar stroke ( leaving me with pins and needles in my left foot underneath my toes, burning sensation in my left neck and bottom of my spine plus underneath my right foot.
Numbness in my right thigh and left calf…… well things just got worse for me with a diagnosis of fibromyalgia! Bloody untreatable which I was gob snacked. But can happen to people like me!!

Sometimes I feel they don’t know what us SS are going through and send us to different consultants who so easily diagnosed us to quickly with wrong diagnosis. I also have a tremor in my right hand which only started about a year ago.

Reading @Jordan posts it makes me suspicious of everything the doctor says to me.

I’m very sorry I have t been as active as usual but I’m struggling with chronic pain and fatigue at moment and wish everyone my best, loraine :hugs:


Sending healing prayers and comforting hugs Loshy


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Hi Loraine,

So sorry to hear you’ve been diagnosed with fibromyalgia. It’s a horrible thing to have & like you say untreatable. From what little I know it’s about learning to live with it the best you can. Which is so much easier said than done. Life sucks sometimes doesn’t it. :confused::confused: You could always ask for a 2nd opinion if you’re not sure. Are they referring you to anyone for further follow ups? I hope so.

Really hope the pain & fatigue ease a bit for you soon.

Sending you lots of positive healing thoughts & lots of love & hugs.

Take care.

Ann :hugs::hugs::hugs::hugs::heart::heart::heart::heart::heart:

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I’m sorry I don’t want sympathy I’m just to sad at the min

@Loshy sending you hugs and best wishes, take care

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We’ve missed you Loraine. Sorry to hear you’re suffering. I had heard of it but had to Google to see more detail. Sounds very unpleasant and probably explains a lot of your pain problems. Sounds like there is also some overlap with stroke symptoms like fatigue and brain fog.

I hope you find a way to manage it as well as possible. Don’t forget us lot though because we care about you.

:hugs: Mark


Gosh, @Loshy, (Loraine :grinning:) I’m sorry to hear that. I know that fibromyalgia is considered untreatable but it is likely that is an acquired condition from stroke? The NHS page states that it can be trauma caused. Chemical imbalances. I would like to suggest some things that may help, but feel a little in the dark myself. I know you like a laugh. I will try and make you smile with one of my well worn and often grimaced and groaned at puns.

Q: What do you call a chap with fancy footwear?

A: Michael Shoose.

We always appreciate and enjoy your contributions to this forum, and welcome every post and response you give. I’m sorry you are feeling pain. It’s vile to have to suffer that, try and seek out those small mercies of pleasure you can. My thoughts are with you. :grinning:


@Mrs5K hi Ann that was my second opinion so no where to go now. Just have to accept it. X

Thanks for your thoughts everyone :smiling_face_with_three_hearts::hugs:


Hi Lorraine, sorry to hear you’ve been suffering. Hope they get you sorted soon.

Best wishes :heart:. Take care and stay warm.

Regards Sue

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Hi Lorraine,
As if you could do with adding anymore to what your already contending with, sending lots of prayers, thoughts and virtual hugs.


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Hi Rups @Rups I’ve had a very long discussion with a doctor who deals with patients after stroke. He was so great explaining. I wouldn’t move (1 hour 15 mins) ( I had half hour appointment).

Brain injury at back of head can bring on fibromyalgia. I was shocked. He explained all the trauma my body has been through (you all know my aliments ) my body just sends pain as the receptors in the brain don’t receive it correctly.

I was also bitten by a tick when living in Germany 30 years ago and had Lymes disease. I had the full course of 3 week’s antibiotics and thought nothing of it afterwards.

What is the root cause of fibromyalgia?

Fibromyalgia is often triggered by an event that causes physical stress or emotional (psychological) stress. Possible triggers include: a serious injury, such as after a car accident. an infection, such as Epstein-Barr virus or Lyme disease, or stroke.

Fibromyalgia was formerly classified as an inflammatory musculoskeletal disease but is now considered to be an illness that primarily affects the central nervous system.

As such, fibromyalgia is deemed to be one of the central sensitivity syndromes. There is increasing evidence of neurogenically derived inflammatory mechanisms occurring in the peripheral tissues, spinal cord and brain in fibromyalgia.

While MS and fibro may have some symptoms in common, they are ultimately distinct conditions with very different causes and treatments. Fibromyalgia and multiple sclerosis are both chronic diseases with no cure. Fibromyalgia and multiple sclerosis can both cause some of the same symptoms

Several rheumatic diseases can mimic fibromyalgia. These include sero-negative rheumatoid arthritis, ankylosing spondylitis, Lyme disease, polymyalgia rheumatica and lupus.

Sorry fir going on but it may help someone else.

Thabks for reading :sleeping::crazy_face::crazy_face:

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@Rups hasn’t been on forum for a while hope you are ok :hugs:

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Bore da @Loshy, I have been around, just reading posts but not replying as much. Last month, I had Norovirus, yet again. During that time, I was going through a malaise of some sort, quite unmotivated to do anything. I would finish my day in my chair, watching whatever detritus my children were streaming from YouTube. I couldn’t even pick up my book which was right next to me. The only salvation was going for an evening therapeutic bath, which gave me some time out to relax and listen to ancient music.

I have snapped out of it now, and ordered myself a little compact sewing machine. In the past, I would rely on friends to repair my clothes. I have a habit of stretching my raiments to the very last fibre of their lifespan. I’ve decided that I need to stop giving friends this task, and do it myself. My symptoms haven’t been kind of late, and walking around has been trying. I can feel my oculomotor muscles twitching as they work hard to adjust to more movement. I have the return of that tight headedness and a bit of nausea which I put down to motion sickness. As I work more thoroughly on progression, fatigue hits me with that body and mind shutting down feeling I used to have early on in my rebuilding journey. Ah, it’s all grist for the mill.

The gradually, creeping, extended daylight of an evening gives me a chance to prolong a few outdoor activities that are required in order to compliment the beginning of Spring. All my gardening tasks are done on rotation as to manage my energy levels.


@Rups thank you for replying I was getting a little worried.

Yeah we all have crappy days don’t we. Though I am glad you are out of it and look forward to your posts.

Keep going young man your kids will keep you young. I’m impressed with the sewing machine. I am rubbish at sewing but my hubby is a dab fab hand, though shh I’m not to tell anyone he has the air of a military man about him after 39 years serving our late queen. He still doesn’t like people to know.

Keep going sending hugs :hugs:

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@Rups sorry to hear you’ve been under the weather, hope you enjoy your foray into the world of sewing :+1:

Best wishes

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Please don’t show your husband, it’s a handkerchief made from an old pair of pyjamas … feel free to laugh :joy: It’s my first attempt on the machine.


@Rups brilliant :star_struck: who will be using this?
It’s a start, please keep them coming well done on your new hobby. Where there’s a will there’s a way :joy::joy::joy::clap::hugs:

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A new business opportunity there @Rups :grin: my hubby always needs new hankies x

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My subsequent one was remarkably improved. I learn best from making mistakes and nutting out what I have done that doesn’t quite work. The real achievement for the day was threading the machine and making a stitch. Perfect day for sewing.

These handkerchiefs are solely for my own use. But I do feel a bit more confident in maybe helping my kids out with outfits for school and festive events.


It’s never too late to learn a trade or craft. Years of handing over garments to people I know to mend, will perhaps one day be me accepting the task and giving back the pleasure of a repaired piece of fabric.