Hi all, I hope you're enjoying your weekend. After 2.5 years I managed to see a consultant (neurologist) who seemed to really listen to what I had to say and gave me a full examination. I've had numerous blood tests and MRI scans over the last couple of years and been fobbed off by several physicians.
The neuro yesterday suggested I had central sensitisation syndrome and described it a little bit like a "pick and mix" condition a bit of CFS, a bit of fibro and a bit of chronic migraines. I am relieved to finally have a label for all the weird symptoms.
Has anyone else been given this label for their condition?
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Rheadster72
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CSS has been used as a synonym for fibro and some people within the commnity have suggested that fibro should eventually change to this. Others suggest further that a number of conditions like fibro could be placed under its banner. Separating brain pain and body pain. Suggested conditions include IBS and vulvodynia. CSS and CAS follow brain scan research and move the discussion towards people with fibro having volume turned up higher and feeling pain when others would not. Variance in meds working could be down to meds for body pain being used when those that affect brain pain should be used and vice versa.
an example of osteo patients is that 30% of those that have corrective knee surgery still feel pain afterwards. And there is a proportion of people with osteo damage in the knee that do not have discomfort even with bone rubbing bone.
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Hi there, no sorry this is something beyond the control of FMAUK
Hi,
I was given the same diagnosis by Neurologist, while Rheumatologist called it Fibromyalgia.
I have migraines since childhood, so the CSS makes sense to me.
I’m a super sensitive person in general. Can’t stand bright lights, loud noises, smells, extreme weather, including temperature and barometric pressure sudden changes.
I’m also very allergic to chemical pollutants in general, all sorts of smoke, paints, fumes, etc., but not to biological sources, mould, pollen, dander, etc.
I haven’t taken the prescribed medication yet, Pregabalin, Duloxetine and Cyclobenzaprine, very scared of the side effects because it turns out that I am also extremely sensitive to drugs!
My current weird symptom is burning skin sensation in hands, arms, legs, feet and upper back triggered mainly by heat.
I’m also in menopause and I think hormonal changes have a role in all this mess because they certainly influenced the onset of migraine attacks in puberty. Before that I only had auras (visual) but no headache, nausea and vomiting. With menopause, migraines seem to have vanished, but now I suspect they haven’t really vanished, they sort of morphed into this burning sensation (a sort of aura).
Sounds a nightmare. Maybe hormone imbalances do act as a trigger. Certainly find my symptoms seem to come in strongly in random fashion. Also currently have burning sensation in various regions - hands, arms and upper back. Today's not been a good day
Yes, nightmare indeed. How old are you? Are you still having periods?
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Burning mouth syndrome?
Petition ~ Change DWP Medicals for Fibromyalgia Syndrome
Newbie from Yorkshire 
What exactly is the benefit
