Thermal Aloydnia

susanjpullen · 02-14-2009, 07:32 AM

Quote:

Originally Posted by susanjpullen

Thank you so much for this. I've got an appointment with my neurologist next month, and I will ask them whether it could be RSD/CRPS/causaulgia.

In the meantime I will look at all the links.

Sue

I've just been looking at the web links.... one thing I do have is a problem with temperatures... sometimes I can't tell hot from cold (unless extreme), for example if I lean against a hot radiator it can feel cool, and if I'm in a warm bath I keep on adding warm water... and when I get out I am really, horribly red and didn't realise it was so hot... it just felt pleasantly warm.

I hadn't realised this was a part of my symptomology as such, and that it might link to RDS... I will let my neurologist know.

echoes long ago · 02-14-2009, 02:02 PM

what does NLP refer to?

Jomar · 02-14-2009, 02:05 PM

I think it is -
Neuro Linguistic Programming
http://en.wikipedia.org/wiki/Neuro-l...ic_programming

sbvcrn · 02-15-2009, 11:39 AM

Quote:

Originally Posted by Jo*mar

some of the sensitivity that you describe almost sounds like RSD {also called CRPS or causaulgia {sp}}

sensitivity to the drafts and to the fabrics.

You might want to visit or RSD forum for more information -
http://neurotalk.psychcentral.com/forum21.html

check the sticky thread there for rsd details -
http://neurotalk.psychcentral.com/thread247.html

I agree as some of it does sound like CRPS. I have done a lot of research and find the only thing that supports this is the sensitivity. I have no color changes, no edema and cannot recall any virus or specific injury that may have caused this. Bottom line I dont think, for me anyway, there is any specific treatment. It is definitely progressing which is bad but then maybe some good will come of it if something "specific" happens that can be "seen" either visually or lab test wise. I truly feel it is not psychological but at this rate it may become "that". I hate being "dismissed" by the medical profession. It is bad enough when no one but these forums have any idea what you are feeling...thank goodness for these! Hoping everybody has a non-irritating day!

Silverlady · 02-24-2009, 12:56 AM

But I don't know your history. Have you had a good neuro do all the bloodwork to check for deficiencies, diseases, etc. Even Vitamin B12.

I have Small Fiber Sensory Neuropathy caused by Sjogren's Syndrome, an autoimmune disease. It burns, freezes and causes some degree of numbness. There are also diseases such as Raynauds that cause the burning and freezing feelings. I hope you will have things such as this ruled out.

And I apologize if this has been covered before.

Billye

sbvcrn · 02-26-2009, 12:02 AM

Quote:

Originally Posted by Silverlady

But I don't know your history. Have you had a good neuro do all the bloodwork to check for deficiencies, diseases, etc. Even Vitamin B12.

I have Small Fiber Sensory Neuropathy caused by Sjogren's Syndrome, an autoimmune disease. It burns, freezes and causes some degree of numbness. There are also diseases such as Raynauds that cause the burning and freezing feelings. I hope you will have things such as this ruled out.

And I apologize if this has been covered before.

Billye

Yep, I have had about every test under the sun including B12 (both types of tests...the B12 and the methy...)All tests, including skin biopsy normal (although I have read a couple of articles not making skin biopsy the gold standard it is proported to be. But bottom line so what...it makes no difference in the treatment unless something could be found that could be treated. Maybe as time goes on something will progress to the point something will show positive...but unless it is something that can be fixed I am still in the same boat. p.s. I have had a bunch of autoimmune tests. Ironically about 2 years ago I had several elevated ANA's...1:640, three different times by two different labs. I had numerous other auto immune tests for sjogrens, lupus, and others and all were negative. Today, my ANA is less than 1:40, sed rates have always been 1, and crp's usually run 0.8 to 1.0 so no inflammation is showing.

Tiril · 02-26-2009, 06:49 AM

Quote:

Originally Posted by susanjpullen

Does anyone else have this problem?

I've had my test results back now (spinal tap, EMG, bloods, etc) and they are all clear (thank goodness).

The Neurologist says that we will probably never know what caused the nerve damage, but the nerves are beginning to heal themselves.

He's not sure to what degree they will heal.

The problem I am left with is caused by cold and by draughts. I get pains, ranging from mild through to debilitating.

This means that I have to use a walking stick (much better than before, when I was using a zimmer/wheelchair combo so I'm grateful for the fact I can walk at all).

The degree of limitation in walking varies from barely being able to to walking pretty easily, and all because of draughts and cold.

At home I sit in a sleeping bag, which I find helps. I find having a warm bath before bed helps too.

Has anyone else got this problem, and if so what ways have you found that help this?

Many thanks.

Yes I have Thermal Allodynia, this is called Small fiber Neuropathy, because the small nerve fibers feels cold/warm and pain. The thicker nerves are supporting muscles ( the short expl.)

I also have RSD/ CRPS, which gives you the same type of allodynia, but it is not the same

My neuro thinks I got this type of Allodynia because of hypothyroism or a autoimmun disease. I read you also have thyroid problems?

I have to be inside most of the winter, I have found that 23-25 Celsius is the best indoors, then I do not have to sit in a sleepingbag like you.

I have batteriwarmedstockings and gloves when I go out. And clothes made of Wool.

I have leggings and pulsewarmers, and warm boots

but mostly I am housebound,
you are not alone with this thing

Tiril

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