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neuropathic pain
Posted: Fri Mar 10, 2006 8:05 am
by billf
My wife was dxd 6 years ago. For the last 3 years she has had chronic nerve pain (aching, burning, sensitivity, etc.) down one leg or the other (never both) to the toes. It's almost always there at some level, but can be fired up immediately by certain activities or positions (sitting, bending forward, etc.) that are typical for someone with a back/pelvic injury or instability. Every single diagnostic test (including 10 MRI's of lumbar spine) show nothing wrong mehcanically. And all possible treatment regimens for back/pelvic pain/instability have failed. So all the Docs are beginning to conclude that it must be the MS. We're exhausted from searching and are starting to agree, but I'm skeptical that it is entirely the MS. I've never heard of MS-related pain that is so consequential to certain movements/positions. I'm not talking about pain brought on by vigorous activity (i.e. raising body temp) . Simple things like lying on one side will immediatly trigger the pain down to the big toe. Could that really be the MS? Seems much more mechanical to me. Can a mechanical issue that might cause very low-level pain, get exaggerated by the MS, so that it's really both issues?
As far as treating MS pain, has anyone had experience with Cymbalta? Effectiveness? Miserable side-effects?
Thanks!
Posted: Fri Mar 10, 2006 1:10 pm
by amelia
My husband, Gary, has been DXed about 15 years, had MS over 25 that we know of NOW. He had this once. For several months a certain way he moved brought on this intense pain down one leg. the leg even turned red, not to mention what his face did with all the pain. It is called neuroligia, or in common terms, a damaged nerve. Yes, MS can cause pain in different ways. We thought it strange too, as you never hear of it mentioned in the literature about MS. Do keep researching, do look at other things, but don't close MS out like we did. It can be a difficult journey to diagnosing MS or some of the other neuro diseases and disorders. They all have similar symptoms
Posted: Sat Mar 11, 2006 7:28 am
by Arcee
My neuro once told me that given the location of one of my lesions, I may feel certain tingling depending upon how I position my head/neck. When I am tired, I can feel the difference when lie a certain way. Not exactly like what you are describing, but there is a similarity so I thought it might be helpful to pass on this example.
Posted: Sat Mar 11, 2006 5:09 pm
by mrhodes40
And another issue. I have had MS for 15 years (at least) and have had sciatica, pain down the right leg, for 7 years. It is complicated by the MS because the muscles in my hip are spastic, and thus causing piriformis syndrome as well as the torn annulus (disc covering) causing the nerve root issues. The combination is tricky to work with. I find that weekly massage helps me as well as PT, and Ive used various types. recently I had a McKenzie style PT and I thought that was more helpful.
Marie
Posted: Sun Mar 12, 2006 12:13 am
by Toyoterry
I've had hip and leg pain for years, we assumed before my dx it was sciatica. My feet and fingers also suffer from neuropathic pain. I also have chronic headaches that were thought to be sinus problems. Turns out it was muscle tension from my MS. MS pain is a strange thing indeed. I tried Cymbalta but didn't like the way it made me complacent. I am currently taking Lyrica and Neurontin. Hard to say if it works or if my occasional improvements are just the normal MS flulctuations.
Terry.
Posted: Mon Mar 13, 2006 7:21 am
by billf
Thanks for the feedback. So far I don't hear anyone describing what my wife has. Yes, she does have MS - we know that already. And, yes, whe does have MS pain that comes and goes, especially when she is tired. What is confusing us now is pain that gets triggered when she sits or lies in a certain positions for a few minutes. I am a little suspicious of piriformis syndrome related to spsticity in those muscles. Thanks
Posted: Mon Mar 13, 2006 11:50 am
by mrhodes40
Bill ley me reiterate, my piriformis / sciatica complex is wose in certain positions. I do have a torn annulus but it is consiered clinically insignificant and not able to cause the "I can't lay on my right side or my leg goes numb" thing. I even had a neurography of the sciatic nerve on the right in order to see if there was calcification or other signs of damage to the sciatic at that level. NOthing. Then I had piriformis botox to knock it out and see if that helped. It did lessen the pain but did not take it away and it made me weaker by a WHOLE bunch and I've never recovered. I say Don't do it if it comes to that!
marie
Posted: Mon Mar 13, 2006 11:55 am
by Arcee
Bill, I'll also reiterate that given the location of a lesion, when I position my head and neck a certain way, it causes tingling/numbing. I'm lucky that it doesn't always happen, more often when i am tired or the lesion is more "active," but it's based on a physical position.
Posted: Wed Mar 15, 2006 9:56 pm
by remnants
Hi Bill,
I recently went through a period of intense pain shooting down my leg as well. The pain was very intense, making it difficult to sleep, and definitely relative to my position. In addition, I attributed the pain to MS.
-Cindy
Posted: Mon Oct 18, 2010 7:55 am
by Galway
I have been diagnosed with MS four years ago. Following a year I developed pain in my buttocks when I sit and now it radiates into my legs and hips. I have not received any help from my neurologist. Have tried PT, massage and differenct meds including neurontin, cymbalta and lyrica. Nothing seems to help.
I noticed that bliff was sending messages regarding his wife having similar symptoms.
Have you found anything that helps?
Not quite certain just where to turn.
Thanks
Posted: Mon Oct 18, 2010 9:19 am
by Katman
Welcome, Galway
This is a wonderful place that may give you some answers. There is another site, too, to look at. It is CPn Help.org; it is also known as CPn Help.
Rica
Nerve Pain down my left leg
Posted: Thu Oct 21, 2010 5:13 pm
by keepbattling
I was diagnosed in 99. I went blind for 4 months, then my left side going numb and an MRI later MS is what I got. As far as nerve pain. I have been dealing with nerve pain for 6 years. I wound up with back problems and had surgery to remove my L4 and L5 discs. At that time the Leg felt great .. I couldn't believe it .. They (the Docs) were saying that my leg pain was my MS, but here it was my back all the time.. .NOPE>>> about a week after the surgery the pain came back.. no more back pain (which I wouldn't wish on my worst enemy).... I have been all all the "nerve pain" medications... elivil (sp?), Lyrica, celebrex, cymbalta ... you name it .. no of which did anything.. I was on Oxycontin and Oxycodone for about 4 years and not wanting to be on oral pills for the rest of my life.. I couldn't even get up and walk in the morning without taking my pills. 2 weeks ago I had a Baclofen pump implanted. I went for the trial thinking that it wouldn't do anything for me. After the doc gave me the meds itrthecally I was surprised .. my leg worked ... pain lower.. OMG.. this is amazing ... so I went ahead and had the pump implanted .. so far Swollen to the size of a small watermelon, dizzyness, nausea, and weak legs .. My doc says I'm not giving it enough time ...my leg pain is the same as it was (mine gets worse from sitting along time or walking along time). They are going to put my pain meds in the pump once the swelling goes down... I could say the spacisity of MS may be the cause of some of the pain.. .but I have tried it all and I truly believe that you can have the HORRIBLE Nerve pain from MS.. If you put a poker in a fire and shoved it thru the middle of my leg the pain would be equal.... I don't know if I would do the pump again. I know its only been 2 weeks .. but gosh I would love to wear a normal pair of pants again...the pain isn't gone so I don't know that I accomplished much
Posted: Sat Oct 30, 2010 3:56 pm
by Filmmaker
Apparently, nerve pain can be caused by vein stenosis...
Posted: Sat Oct 30, 2010 4:26 pm
by jimmylegs
muscle and joint pain can be linked to nutrition also. as can vein stenosis, see links provided below.
i wrote this in a private message to another user but it applies here:
have you ever looked into your magnesium or zinc levels? how's your vitamin e intake?
ms patients are recommended to obtain [up to 900] mg of elemental magnesium delivered to their system daily, from food (eg dark leafy green veg [as in chard and spinach, also halibut and chinook salmon and black beans]) and/or supplements (magnesium glycinate is best). target serum value is at least 0.91 mmol/L
ms patients also tend to be lower in zinc. food sources include red meat, oysters and pumpkin seeds (not sure about the relative bioavailability of zinc in vegetable foods). there is some earlier discussion of zinc forms in the forums, which should be searchable. try searching for terms like gluconate to tap into that discussion. target serum zinc level is abut 18 umol/L (i've seen other studies that range from 17-19 but you wouldn't want to get much higher [according to research, 30 umol/L is the top end of the recommended range]).
also make sure you get enough vitamin E. the blood tests out there aren't fantastic in my experience, but a good vitamin E rich diet (eg raw sunflower seeds) plus supplements (ONLY choose an E8 complex - nothing else is good enough, eg 'mixed tocopherols' are only half of the complex).
no target serum values for vit E yet. you could probably only easily get 1 test done, out of the 8 components of the complex.
the klenner protocol for ms uses 800IU vitamin E with three meals a day and again at bedtime (you don't do that forever though, it's a short term therapeutic megadose approach).
i would NOT follow the klenner recommendation to use d-alpha tocopherol acetate of d-alpha tocopherol acid succinate. the klenner protocol is old and he made his vit E recommendation based on the best info available at the time. nowadays, E8 complex is better.
i think i would consider trying one thing at a time, for a week at a time, to see if any specific one of these makes a difference over 2 or 3 days. i'm thinking zinc first, then mag, then e...
HTH!
and as promised, for the vein stenosis. we already knew ms patients had low zinc, and apparently the same goes for those with venous insufficiency:
http://www.thisisms.com/ftopicp-140188.html#140188
Chronic venous insufficiency... Depressed levels of zinc have been noted in patients with CVI and venous ulcer...
click through for a bunch more abstracts
also:
http://www.liebertonline.com/doi/abs/10 ... .2008.0671
Zinc deficiency represents a risk factor for carotid stenosis (CS) development.
Posted: Sat Oct 30, 2010 4:41 pm
by jimmylegs
one other thing. i wrote the above for someone i knew was already taking vitamin D3. bill do you know your wife's vit D3 status? target is at least 100 nmol/L to be at lowest risk of ms. 125-150 nmol/L is even better. don't go over 250 nmol/L due to risk of hypercalcemia.
the following is in the diabetic context but you can still see them relieving suffering of neuropathic pain with D3 treatment.
...patients with debilitating residual symptoms may be given nonspecific diagnoses such as "chronic pain syndrome." Although hypovitaminosis D is highly prevalent in patients with type 2 diabetes, to our knowledge, its impact on neuropathic pain has not been previously evaluated. ... A total of 51 patients with type 2 diabetes with typical neuropathic pain, including burning, tingling, numbness, and throbbing sensations ... were included... All patients were vitamin D insufficient, with mean serum 25D concentration of 18 ng/mL.
The mean serum 25D concentration in our patients was higher than "osteomalacic myalgic patients" reported in the literature (18 ng/mL vs <12 ng/mL). ... the improvement of pain in our subjects following vitamin D repletion could not be attributed to a decrease in parathyroid hormone level... the improvement in symptoms was independent of parathyroid status... The mean (SD) serum 25D concentration at 3 months in our study was 30 (5) ng/mL, which correlated with significant pain reduction.
in those units, you want to aim for 40 ng/mL to be at least risk of MS.