Weird pulsing, crawling pain in lower spine, anyone?

Sasha

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I've got a lovely new symptom! It started two weeks ago and about two days before an acute viral infection (which had exhaustion, malaise, running nose, sore throat, sore ears as symptoms). It's a sort of low-level pulsing pain in my lower spine that either pulses a few times in the same place or sort of crawls around my lower spine (from the small of my back to about 6" higher). On a pain scale I'd give it maybe a 1 out of 10 - it's almost not pain but a sensation.

I was worried about having a weird new symptom, especially to do with the spine, so once it had continued for a few days, I phoned NHS Direct who couldn't diagnose it and recommended me to phone my local GP's surgery out of hours (it was the w/e). The GP I spoke to didn't recognise it as a symptom but thought it might be related to the viral illness even though that hadn't started until two days later and recommended me to phone my usual GP if it persisted.

I was going to phone him today but since it seems to be an obscure thing and he's no ME expert I thought I'd see if this symptom rang a bell with anyone. The symptom is very mildly annoying rather than distressing but I'm worried in case it's a sign of anything! :eek:

Anyone recognise it? :confused:
 

leaves

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I do have crawling feelings, i have them in my head and feet. These are neurological I think. Not on spine tho.
 

Sasha

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Hi leaves! I've read about people having feeling like ants crawling - is yours like that? Mine isn't like little insects crawling - it's almost a rippling and the pulsing aspect is quite peculiar. It had sudden onset and it's been happening for two and a half weeks now, on and off. I've been ill for 25 years and have never had this; I'm thinking that it's perhaps unlikely to be an ME symptom.
 

Sasha

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Hmm... don't think I've got wiggling.

I hope your wiggling thing isn't too distressing/distracting. I don't like the feeling but I could live with it if I knew what it was!
 

Sasha

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Update - after four months including a spinal X-ray and two ultrasounds showing nothing unusual, I was referred to an consultant physio for diagnosis and he tells me that my back muscles have become so wasted that I now have very little muscle tissue attempting to do all the work and that the muscles are in partial spasm (which I can't feel - there is no pain) but due to the wasting, my nervous system isn't interpreting what would normally be pain signals correctly and instead is reading the info as rippling or (more recently) a lateral stretching sensation. He referred to my back muscles as being "like the last few penguins left on the ice floe"!

This is reassuring and helpful - I'm now going to be seeing a physio (privately, the NHS would only send the same useless community physio as before) to see what rehab might be possible.

Hope this helps anyone else who is having these weird sensations - pulsing, crawling, stretching - in the back. Not an ME thing but a wasted muscles thing, it seems.
 

sleepy237

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Hi Sasha I have had what you describe as one of those random symptoms that come in go, feels like a heartbeat in the spine. With all the other crazy autonomic dysfunction I have, I have settled for some kind of misfiring of nerves.
 

Enid

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Only just caught up Sasha, glad to hear not too serious and Physio may aid. All you spoke of was very familiar to me involving a "post polio" type condition and muscle wasting (lost a stone) Hope your Physio will gently build up.
 

Sasha

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Hi Enid - sorry to hear you've had this trouble too. I'm just relieved to find it's not anything sinister such as a tumour, and to find that it's potentially fixable if I'm able to expend the effort for the exercises.