Questions--please suggest something!

[Shadowrose40]

HI

I've had PN for years--almost since I was diagnosed with diabetes. The problem is that it's getting much much worse. It's not affecting not only my feet--but my hands as well. Or at least I think that's the cause. My hands will literally feel like someone is pushing bamboo sticks under my fingernails and it's excruciating. The morphine I was on didn't touch it at all.

The other problem is that I had a diabetic ulcer on my heel several years ago that has never fully healed. Now, after 6 years--it's become so painful I can barely walk. I absolutely can't wear anything but Crocs that don't touch my heel at all, but now the pain is radiating from the spot where the ulcer was to the bottom of my heel. I've checked--there is no new ulcer forming--though the old one is still scaly and peels all the time. It took 6 months to heal back in 2003 when it happened out of nowhere.

I've also noticed that the hair on my legs has stopped growing. I only have to shave my legs about once a month. I alternate between extreme pain and severe numbness. I've resorted to using an electric scooter most of the time if I have to walk any distance due to the pain caused by walking.

Does PN change that much? Does it radiate UP limbs? I do have spinal problems, but supposedly nothing impinging nerve roots severely, and my blood sugar is well under control. When the pain is severe, my blood pressure goes through the roof. It always does when I'm in a lot of pain. But, with a history of a stroke, I worry that it'll cause problems and I'll end up paralyzed permanently if I have another one. After the stroke in 2007, I got almost full use back of my right side--just some residual weakness on that side. I'm only 48, and would like to become somewhat healthy again.

I also have a history of blood clots and of pulmonary embolism--they think that's what caused the stroke, and they're attributing the clots from two years ago as the cause of the severe leg pain--but I'm not buying it. The clots weren't in my legs--they were in my lungs.

All my labwork is normal except for an elevated sedrate (which is chronic with me). My B12 is fine--I had that tested, too. I also have gastroparesis--so anything I eat sits for hours and I'm always nauseated after eating a meal.

I take about 14 meds for all my health problems--but my biggest complaint is the nerve pain that absolutely nothing helps. Neurontin, which I was on for years, didn't help the nerve pain and fried my short term memory. I refuse to even consider taking it again. Topamax worked in the past, but they won't give it to me again because of a history of kidney stones and kidney failure.

Also, I get major discoloration in my hands when the pain is very bad. They either turn red or blue. Usually only one at a time, not both at once as you'd see in Raynauds.

Sorry this is so long--I'm just at a loss for answers and can't function at these pain levels any longer. I can't go the injection route again--it was agonizing and made my pain much much worse.

Any comments are appreciated.

[moose53]

((((((ShadowRose)))))),

http://smileys.smileycentral.com/cat/11/11_2_104.gif

Long time; no read!! I think about you sometimes and wonder how you're doing.

Something like Cymbalta or Effexor XR should work well on the nerve pain that you're having. The Cymbalta will work within a week if it works at all. The Effexor XR takes up to a month to get maximum effect.

I have neuropathy in my hands and feet and forearms and lower legs. Mine is caused by a blood condition (MGUS) which may or may not roll over to multiple myeloma (bone marrow cancer) if I live long enough.

I've noticed the same things -- sores don't heal as fast; don't shave my legs anymore. Yeah, peripheral neuropathy does spread up like that. It starts in the hands or in the feet and spreads toward the center of the body. Right now, it's up to my elbows and up to my knees. I've been pretty stable since 1990 when I was diagnosed with the MGUS; but, the intensity of the pain continued to get worse and worse until I went on the Effexor XR three or four years ago. Once in a great while I have the type of bamboo shoots under my nails pain that you talk about; but, the Effexor XR pretty much holds most of it at bay.

If your blood pressure is going up in reaction to the pain levels, you've got to make sure that you get your blood pressure medication regulated. That's gonna put you at real risk for another stroke or a heart attack.

Oh, both the Cymbalta and the Effexor XR help with the pain of the fibro too. I very rarely feel that unless I'm overtired or I've spent all day in the dentist's chair.

I was on the Neurontin for quite awhile for the fibro/PN. Comparing what I felt like then to what I feel like now on the Effexor XR -- not even on the same planet. This stuff really works!!

Oh, the color change in your hands, that could be caused by circulation problems or by the PN or by a combo of both.

Do you have good medical care or are they just a bunch of pill pushers??

I don't know where you're living now. If you're near a university hospital, you might want to check and see if they have any clinical trials. Clinical trials are a great way to try out the new stuff and also a great way to get free drugs if you're having money problems. I have a bunch of clinical trial websites listed in my bookmarks: Click here (http://public.murl.com/moose53/HEALTH_AND_MEDICAL/RESEARCH_(MEDICAL)/CLINICAL_TRIALS) (press the [page-down] key 5 times to get to the appropriate section).

Oh, you might want to go a podiatrist and get him/her to check your feet. You might have a heel spur. You'd get the same sort of excrutiating pain in your heel when you stand. And, since you say there's no evidence of a new ulcer, that might be something to check out.

Now, this suggestion's gonna come out of left field, but, heck you're corresponding with a talking moose :D -->> Talk to a doctor about gastric bypass surgery. There's been a lot of talk this year about gastric bypass surgery reversing diabetes very soon after or immediately after surgery. Read these: http://www.newsweek.com/id/155357 and http://stanford.wellsphere.com/weight-loss-article/60-minutes-gastric-bypass-cuts-cancer-risks-eliminates-type-ii-diabetes-pr-for-pushing-surgery-on-low-bmi-betes-peeps/454286.

I use a scooter now too. I have a lousy back so can't stand more than five minutes. But, the biggest thing with the walking is that with the PN, I have trouble telling where the heck my feet are in relation to my body. I am way too unstable to be inflicted on the planet in an upright walking mode :D

I'm glad you posted again. Nice to know you're still out there kicking *A* even if you have to hold onto something to be able to do it http://img.photobucket.com/albums/v90/moose53/MINIS/LAUGHTER/girl_haha.gif

Well, Pattycakes, I'm still routing for you. Get yourself to a competent doctor and get some good drugs for the PN. Morphine and stuff like that won't touch nerve pain at all; the doctor who prescribed that is an idiot.

Take care of yourself. Give your daughter a HUG and keep a BIG HUG for yourself.

Barb

[Shadowrose40]

Hey Barb!

I've never heard of MGUS. What is it? How is it diagnosed? We've always had a similar medical history, if I recall.

I don't need gastric bypass, don't think. Believe it or not--I've lost tons of weight. I weigh less than I have in about 25 years. Got down to 140 (though put on about 20 pounds after getting hurt yet AGAIN) Only time sugar is high is when I'm really sick. Was sky high after the stroke and with the clots. I was clot central for a while there. Was in the hospital over a month. Christmas sucked that year--spent it in the hospital.

Most gain weight they tell me on pain meds, but I actually lost weight once I could live again. Started gaining weight when the doc lowered the pain meds as the pain increased.

Pain levels now are sky high and I'm back to non-functional again. I was actually going BOWLING every week when I felt good. Now, I can barely move from house to car. Going downhill really really fast. Fell three weeks ago and trashed my SI Joint. Percocet they gave me are a joke and a half, let me tell ya.

Pill pushers work better for me than the needle jockeys do--I can't deal with them--they put me in agony. Went through that after I got hurt trying to teach for a year.

On a GOOD note--I sold a book--it comes out in July!

[pab]

just an FYI. ..ordinarily clots in the lungs ie "pulmonary embolism" PE for short....dont happen in the lung...they come from the legs and lodge in the lungs.....am also wondering if reynaud's is always bilat? have recently read something about reynauds and magnesium soaks......am presently involved in care of a persons who is on mag sup for prevention of kidney stones....good luck

[joy]

i am not a diabetic but do have idiopathic peripheral neuropathy. and yes it is spreading from lower to upper from feet up to knee and from hands into middle etc.

aside from having TN and meniere's to start my whole life of pain to begin with, those sores on feet were the most difficult thing ever to deal with.

i did have a diabetic neighbor who gave me valuable information and i finally took it and it worked for me.

here it is - stay OFF your feet. i thought i was going to absolutely die as i had my mother with me and i thought i just had to continue taking care of her. turns out she qualified for programs so i signed her up for them.

then i hit the couch and watched everything on public tv until i thought i'd die from boredom. but when my foot finally healed enough, i had the tiny bone removed from my foot and forever more have worn the most confortable shoes i can afford. social security does not pay for diabetic shgoes if you are not diabetic.

go figure, like you, months and months going into years of therapy 3 times a week but they won't spring for the shoes and insoles that cost $160 bucks.

so give that foot a chance to heal. find the best foot doctor in your area and listen to them, and stay down. i have seen pics of people who have lost their feet and it is worth while to let that foot heal.

the pain never leaves until they are dead. sorry. but i can say that the hands and feet have been the most painful. the rest is just a horrible nusiance so far. i'm praying that is what i can say for a long time to come. but it is progressive so i'm not counting on anything from now on.


i hope you heal and come back and tell us about what a good life it is with 2 almost normal feet. i know a man that finally went to my doctor and his foot was healed, it didn't look normal as they had to take so much off but hey, it had healed and he was so glad of that. he had other bigger health problems it turns out but he was so happy that his foot finally healed.

good luck with it all.

[Shadowrose40]

Hi Pab...my clots were likely caused by my atrail fib--my heart. Legs never showed anything, but who knows. they just have tons of pain, and now the heel pain in the left one from the somewhat healed ulcer from almost 6 years ago rearing its ugly head again.

Joy--I live in crocs. they are the only shoes I can stand to wear at all. Others are just too painful to wear at all. I can't stand for anything to touch the back of my foot at all. I wish I could just stay off my feet, but I teach first aid and CPR, so that's not an option for me at all. I'm on my feet for hours at a time. I am going to go see a foot doc though, as the pain is just too bad to take, and morphine doesn't even touch it.

thanks for the responses!

[pab]

Hi Pab...my clots were likely caused by my atrail fib--my heart. Legs never showed anything, but who knows. they just have tons of pain, and now the heel pain in the left one from the somewhat healed ulcer from almost 6 years ago rearing its ugly head again.

Joy--I live in crocs. they are the only shoes I can stand to wear at all. Others are just too painful to wear at all. I can't stand for anything to touch the back of my foot at all. I wish I could just stay off my feet, but I teach first aid and CPR, so that's not an option for me at all. I'm on my feet for hours at a time. I am going to go see a foot doc though, as the pain is just too bad to take, and morphine doesn't even touch it.

thanks for the responses!

AH! is it possible you have some micro damage in your feet from the same thing......and stay off the foot as much as possible....but watch for shoulder injury if you use crutches (dont ask, lol)....think thru your teaching and do as much as possible sitting with students around etc....brain storm....good luck