A year ago I was a healthy, very active guy. I biked, roller-bladed, hiked, played racquetball and tennis, downhill and cross country skied, water skied and even para-glided.
Today I am in pain excruciating pain 24/7. I can't sleep. I can barely walk with a cane. My doctor and diabetic specialists are useless. They just throw more and more meds at me, at one point putting me on Oxycoten without even warning me about all the devastating side effects, like wanting to jump off the balcony to end the pain.
I'm only sixty-three and cannot believe that whatever years I have left will be spent in this much pain.
unfortunately, this is a tough thing to overcome. Yes meds. can help and Buffalo's ideas are practical. I like a drug called gabapenten, taken at night, it has helped me.
Now I will not kid you I have seen neuropathy is never cured by drugs. And lots of drugs sometimes makes things much worse. there are no quick, do this get that and go on solutions. Neuropathy is an out come of high blood sugars over time. If your blood sugars are not in tight control now, it will help to get in tighter control and each time you tighten control, the better it will get. Still even perfect control cannot erase all damage. My best advice, stay away form narcotics unless you just cannot help it. Use one of the various drugs for this issue. Tighten control and unfortunately, you will need to get used to the condition.
Please help us help you. You will learn of new ideas here first. The cane is a practical idea. I have used one off and on for this situation. I wish you good fortune. This is a tough road, and we are in your corner as much as anyone.
to each there own but gabapentin didn't help me at all did just the opposite and made me have many sad thoughts. im learning still but steady numbers help everything except these gas prices lol
Thanks for the comments. I am off the Oxycoten. The side effects were much worse than the slight mitigation of my pain. On the Gabapentin issue, I am taking the daily maximum, 3600 MG, now. I did not think it was very effective, that is until I ran out of it do to a mix-up with my prescription. I was left in intolerable pain, so I guess it works.
It is very hard to accept that this pain is my lot in life now. Having been incredibly active, the thoughts of never being able to participate in these activites that I love is truly devastating. My diabetic neuropathy is a result of going six weeks without any of my meds. I was living in a shelter and there was nowhere except the hospital to get my meds, and even then, the hospital only gave me three day's worth, hardly enough to save me. The doctors say that going without my meds for this long has resulted in permanent nerve damage. Had I known the consequences at the time, I guess I would have parked myself at the hospital and demanded my meds.
Lowering your A1c and keeping your BGs level will cure or at least reduce the pain. It takes time and effort, but it sure beats taking pain killers which loose their effectiveness with over-use. Taking R-ALA (max. 1800u/d) can reverse neuropathy, but it is not cheap.
I agree with Alan. I started having neuropathy pain too, after about 35 yrs. of D. My A1C was a little higher than yours and I knew I had to get it down. If I went to bed with a bg reading above 200 mg/DL I'd get intense shooting pain like someone pinched my toe(s) with pliers.
Two things helped: first, for the acute situation, the homeopathic remedy Arsenicum in a 30c or 200c dilution; second, getting my bgs and A1C down. I'm in the 6's these days largely because of using an insulin pump. Still, if I go to bed high, I can still get the foot pain - Great motivator, right?!
Just started a new natural product called Neuropathy Support Formula and wondered if anyone else has tried this? It may have been pure coincidence but the first day I took this my foot pain was off the charts. The burning sensation and pain was incredible, but the next day was better and the day after was better than the previous. It seems to have relieved some of my pain and hopefully if I stay on it I might mitigate the pain to a tolerable level.
Your timeframe sounds similar to mine and I had a very painful neuropathy that got worse very fast and I needed a walker to get around. I was strong and active and in just a few months I so weak I coundn't even drive. After fooling around with pain pills I got myself to a neurologist and this was not diabetic neuropathy as the regular doctors assumed. The neuro did an Emg NCV ran blood tests and did a nerve and muscle biopsy. Had I waited much longer I might not have been able to regenerate my nerves. The type of neuropathy I had was an inflammatory neuropathy that was not caused by diabetes and was not from diabetes. I was lucky and should have been diagnosed sooner. This came on very fast and kept getting worse and worse all in a just a perios of several months. Neuropathies such as these need to be caught early and the chance of full recovery is better. I was treated with an inflammatory med for 2 and a half years. The pain (horrible) went a away after only 3 months. It has been two and half years since i came off the meds. and the brilliant neuro said he expects me to come back 100% and doesn't expect me to backslide and I just keep healing although the nerves come back slowly. This was a rare and uncommon neuropathy and if I had kept taking the pain pills I might have deteriorated to a wheelchair. The faster the correct diagnosis the better. Just because someone has diabetes assumptions shouldn't be made. Most diabetic neuropathies progress at a much slower rate and only a skilled specialist can determine for sure. I hope you seek help with a good neuologist and get a second opinion if necessary. Not all neuros are created equal.
Thank you for that information Most interesting and yes, our symptoms seem to be the same. I too was shocked at how quickly I went from being so active to barely being able to walk.
It's interesting that I did a lot of research on the internet about my condition and learned a host of other possible reasons for my pain. I took my research to one of my diabetic specialists and, as with most doctors, she virtually ignored any other possibilities. Earlier in life I had suffered injuries to both of my feet, one, when I crashed my dirt bike and tore up all the muscles in my foot and the other when I slipped on a patch of ice and had a bone spur. I also went through a painful period of plantar fasciitis where I could not walk by the end of the day. At the time this was solved by getting shoe inserts called Heel That Pain (heelthatpain.com) which were a Godsend.
Although I am no fan of medications, I am trying a product called Neuropathy Support Formula and this seems to be working, although it's only been about a week. At this point I'll try just about anything that will mitigate the excruciating pain.
I don't know where you live, but I believe you need to get testz to see what's going on. A good neurologist specialist ie. neurologist would know to which test to run and a spcialist with years of experience would also be better at diagnosis. I was referred at first to someone who claimed to be diabetic neuropathy specialist but he was acutally a physical therapist. My endo knew this was not diabetic neuropathy and my brilliant neuro said my endo was very smart doctor. If tests are not run they don't know what type of neuropathy it is and just because we have diabetes doesn't mean it is diabetic neuropathy. Most neurologist only get 30 houra of training in mecial school for rare neuropathies and possibly what you may have. I also have plantar fasciitis and osteoarthritis in my knees, but this was different and I have never had such pain. After 3 months the pain was gone although I did have some discomfort. I cannot diagnose you and I will pray that you find the right neurologoist who can determine what's going on. Also my sugar was well controlled when this rare disease came on. We need to keep our sugars well controlled no matter what. I wanted to share this with you because it doesn't sound like typical diabetic neuropathy and I have been through the mill. I have had bony spurs too. row are your Blood Glucose readings ChecMark if I may ask. My prayers are with you.
My numbers were very bad - our meters are different here I believe, but my readings were high twenties and sometimes as high as "too high. too high". They are better now, with most mornings under ten and rarely above mid teens.
Based on your information I am going to try to find a neurologist to get tested.
I can only say Mark go for it! Also try to keep you sugars as low as possible. I can only relate according to what I have been through, but my numbers have never been bad. No matter what is wrong with us low numbers will halp. I will pray that you get the help you need. I am sure your future will be great!
Quick follow-up. I researched finding a neurologist who specialized in diabetic neuropathy and found one. I called his office and they told me to get a referral from my family doctor. When I then asked how long it would take to get an appointment they said at least a year. So much for Canadian healthcare.
Please don't give up. You cannot afford to wait a year. Maybe your family doctor could expedite the appointment.. You are in excruciating pain and could lose a lot of nerves in the meantime. Is there any way you could pay a certain amount out of pocket to get the diagnosis you need? Could you possibly contact another family doctor. I do not know that much about Canadian healthcare. Maybe someone on this forum could help? You just need a top-notch neurologist and not necessarily one who specializes in diabetic neuropathy which you may or may not have. A good neurologist will know which tests to run and can then determine what's going on. I will double up on the prayer power and you are a very sharp guy so I am going to expect a good outcome if not an outright miracle.
Hi ChecMark! Could you bypass your diabetic specialist and see a family doctor for a referral to a neurologist. The neuro's office may be just someone's opinion about a whole year it doesn't sound right. But you might get lucky and get an appointment in a couple of months if you try. Also you could ask to be put on a cancellation list and if someone cancels you would get in sooner. The longer the nerve damage is untreated the harder it is and you may not come back completely. Also no diabetic specialist can determine what is going on with your nerves if they don't do an emg ncv. A test is crucial and had I not been taken care of I could have ended up in a wheelchair.
Just had an EMG which confirmed my peripheral neuropathy. Not the best news because I was hoping it was something else and that whatever it was would be curable.
Now that I'm stuck with it my question is about footwear. I had orthotics made which turned out to be a disaster. After about two weeks of wearing them I could barely walk. In addition to the burning and pain in my feet I was now getting shooting pains up my calf and even more foot pain which I didn't think was possible. I stopped wearing them and went back to my "heel that pain" inserts.
I went to a doctor to prescribe diabetic shoes and socks, but our wonderful health program doesn't cover them. (These are the same idiots who cover insulin but not the needles to take it.) I am at a loss as to what footwear I can wear to mitigate the incredible pain. I've tried just about every Dr. Scholls inserts available and they are useless and very expensive.
I'm wondering if there is any type of foam I can get and cut it to fit my shoes to cushion my feet?
So the standard diabetes shoe is made by a company named Dr. Comfort. yeah not my idea of a cool name either. These are deep shoes, nice support and all.
Last time I bought them without insurance I paid right around $150.00. very worthwhile for me. I suggest you ask a specialty shoe store, if they carry the brand Dr. Comfort, or call any podiatrist and asked if they will sell them OTC. I know a few small independent shoe stores in my area carry them, but they are mostly only from podiatrists.
