This Is MS Multiple Sclerosis Knowledge & Support Community

Hi there, I understand your pain, and I sympathize with you in your struggles to make the doctors understand. I sometimes believe they need to participate in more CE courses on the effects of MS in regards to pain. But anyway, I experience that type of pain that's been described by you and others here in my arms and rotary cuffs as well. In fact, I'm in the process of keeping track of how long these particular symptoms lasts. I just finished 6wks. of cluster headaches primarily around my left eye. I wish you all the best.

one very interesting comparison is RSD :
http://www.canadianrsd.com/
Basically RSD is very intense nerve pain , bone pain and blood circulation issues... RSD develops after any soft tissue injury, it could be from an accident or from a disease... and it's like the immune system goes crazy trying to figure out how to deal with ths damn disease that will lead the infected body part to atrophy... this is exactly what happens to us with MS... MS causes brain atrophy (my guess is there must literally be some kind of "cancer" called MS that eat our brain collagen...), this leads to the RSD symptoms, where the immune system sends very painful signals (with aboslutely no result...)... The "good news" is that once the complete damage is done to the tissue, RSD stops, so once MS has eaten our brain, pain will stop....By the way, RSD causes also veins to spasm ( hallo, someone said MS causes CCSVI?...), but no matter how many interventions to open up blood vessels, it will not stop RSD (just like CCSVI "liberation" will not stop MS...) they are a consquence, not a cause...

One of my best friends has CRPS (RSD) and it has been awful to see this disease slow her down. She is in AGONIZING pain every single minute of every single day. She injured her heel in a race and developed into this. They diagnosed it after 6 months which was too late to give her the hope of remission. She has this for life. She honest-to-goodness would have her leg amputated because of the intensity of the pain, but the research shows that amputation actually makes the nerves fire even worse. She is on several different meds, but they don't touch the pain, but they help her sleep a little which, if she's lucky, is 3-4 hours a night. 5 if it's an especially good night. I just keep hoping that one day she'll wake up and everything will just disappear. Or that someone will figure out how to calm the nerves down. She has such a great attitude, though. Keeps smiling through the pain.

Filmmaker wrote:one very interesting comparison is RSD :
http://www.canadianrsd.com/
Basically RSD is very intense nerve pain , bone pain and blood circulation issues... RSD develops after any soft tissue injury, it could be from an accident or from a disease... and it's like the immune system goes crazy trying to figure out how to deal with ths damn disease that will lead the infected body part to atrophy... this is exactly what happens to us with MS... MS causes brain atrophy (my guess is there must literally be some kind of "cancer" called MS that eat our brain collagen...), this leads to the RSD symptoms, where the immune system sends very painful signals (with aboslutely no result...)... The "good news" is that once the complete damage is done to the tissue, RSD stops, so once MS has eaten our brain, pain will stop....By the way, RSD causes also veins to spasm ( hallo, someone said MS causes CCSVI?...), but no matter how many interventions to open up blood vessels, it will not stop RSD (just like CCSVI "liberation" will not stop MS...) they are a consquence, not a cause...

RSD is not necessarily for life, unless she develops limbs atrophy, in which case, it's more serious... but I know a woman who had terrible RSD but went into remission after four years, but she went through a great physical therapy program so I don't know if it's from the PT of just the course of her disease... so Tell your friend, she can reach remisison too.

by the way, I suspect that in my friend'a case, four years is what it took for her tissues to heal... si i think nerves fire those signals in order to get the immune system to the injured place to try to heal it... that is probably why amputaion makes teh nerves fire even more... that would seem logical...

Filmmaker wrote:by the way, I suspect that in my friend'a case, four years is what it took for her tissues to heal... si i think nerves fire those signals in order to get the immune system to the injured place to try to heal it... that is probably why amputaion makes teh nerves fire even more... that would seem logical...

Hi Filmmaker,
You may be interested in reading the book "The Brain that Changes Istelf" by Dr. Norman Doidge. It discusses neuroplasticity and also the phantam pains associated with amputation. It's been a while since I've read the book, but if I remember correctly, the phantam pains are often due to a loss of feedback from the missing limb. Here's a link to a brief review of the book.

NHE

hum, interesting explanation... But then what about nerve pain experienced in other conditions...let's say arthritis? would the misfiring be from lack of feedback form a bone?... hum....

I am know researching the hormonal connection. Maybe there'sa horone that increases with stress, whcih creates pain... could be testosterone, could be oestrogen, could be sth else...

The hormone connection sounds quite interesting...
The reason I say this is that, just two weeks ago, I had my right ovary removed (it was twice the size of my other and causing a large amount of pain AND was producing very large cysts.).
I was told that I would still produce enough hormones, but I am wondering if the DECREASED amount that I am now producing has anything at all to do with what is now occurring.....

Is it over production or under which u are looking at????

suchislife, interesting! I was diag with an ovarian cyst 3 days ago, pretty bg actually, 5cm...
I think it could be both over and under prod, when hormones are disbalanced, a high level in one of them may cause a drop in others...
How old are you byt the way, when were you diagnosed?
I am really curious to know the possible cause effect between MS and fem issues...

one more possibility regarding pain could be aseptic meningitis of brain and spinal cord as seen in other auto immune diseases...

Hi there.

I am 33. I was diagnosed when I was 31. I have had symptoms since I was 12 (immediately after my tonsils were removed for getting strep throat so often, I got strep throat again -- without the tonsils -- after that, it was migraines, psychiatric symptoms, etc...). Most dx my entire life before the Optic Neuritis when I was 31, and the subsequent MRI and noticing of lesions, were labelled idiopathic.

The cysts I were getting were growing to about 5cm or more, also, before rupturing. It was quite painful. The weird thing was that some of the cyst appeared solid and some fluid filled -- that was almost worrisome to doctors until they would rupture and start all over again. (This last one I had, though, stayed with me for 2 years.) And I think the entire reason they were able to get so big is that that particular ovary was also so large. Cysts are normal, and they come and go; they are just usually much smaller. It is when they cause us problems that we need to take action.

Hi, new to forum. Just wanted to thank the people who explained about their ms pain. Mine is just like that and I was thinking it was "Atypical" or something. You all described it exactly. I take cal-mag-zinc and b vitamins. That helps some. I have Tramadol for bad pain days and a mild muscle relaxer for days when tremors in my left leg may lead to further pain and cramping. It is so nice to find a place with real information from others with ms.