Connect
Neuropathy in feet and limited toe movement?
Just curious as I was diagnosed with peripheral neuropathy in the beginning of this year but have yet to see a neurologist about it (postponed till end of June due to COVID19). I have constant pins and needles, numbness, pain in both my feet. It's gotten worse over the years (been dealing with it for ~10 years and never went to a doctor about it due to lack of insurance) and now I can no longer even bend my big toes at all and even bending any other toes are rather difficult. Just wondering is this common...anyone else have this?
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
@jimhd perhaps its a sign Jim, to be looking ahead and not to be dredging up the past......
-
Like -
Helpful -
Hug
2 ReactionsI like this @phoenix0509 . Funny because so true. Jim @jimhd my sympathies for your poor mirror!
-
Like -
Helpful -
Hug
2 ReactionsSame here. I was on Gabapentin 600mg 3X per day for 4 months. Never worked. Currently trying Lyrica 75mg 3X per day. That doesn't seem to help either. I do have MDS/MPN-RS-T which is an extremely rare blood overlap disease but that's an entirely different subject. I have a family history of peripheral neuropathy going back at least 5 generations. It seems to come down on the X chromosome as my mother, her mother and my great grandmother all shared the same symptoms. I was at Stony Brook Neurology (Stony Brook University Hospital) on Tuesday and saw a Neurologist who specializes in Peripheral Neuropathies. While I was there my legs started to spasm which is a good thing because the Neurologist was able to see my major "symptom." She did order several genetics tests which should happen early next week. She ordered one for CMT and HSN. Not sure what the second genetic test is but I assume its for MS and other similar disease that strip away the nerve coverings. These tests are simple swab tests much like the genetic tests people get when they do Hereditary/Ancestry testing. Apparently, genetics testing has come a long way since the earlier blood tests that were very expensive. I did have a genetics test done at the VA Hospital about three (3) years ago for CMT but the VA only looked at 24 genes. The Stony Brook Neurologist said that test was "garbage" because there are over 80 known gene mutations that cause CMT. I feel this Neurologist is determined to find out what is actually causing my neuropathy.
-
Like -
Helpful -
Hug
1 Reaction@phoenix0509 @jesfactsmon and everyone else
The mirror's not a problem. Right now it's the pain. My neurologist is doing a retake on several tests, and today was the skin puncture biopsy. I don't remember it hurting like this. Maybe it's just that the neuropathy pain is worse, so added together it really hurts tonight. I did some shopping after the test and came home and did a little yard work, but it was 91 here, and I could only work for a few minutes, and then take a break. Maybe I did too much. But it hurts too much to stand on it to wash the dishes. Tomorrow I'm getting an x-ray of my thumb and wrist, and at my next appointment in 4 weeks he'll redo the nerve conduction test, this time on my right arm. We're trying to figure out if the pain is from arthritis, neuropathy or carpal tunnel. Arthritis would mean a very painful cortisone shot. Carpal tunnel surgery is pretty straightforward and has a fairly quick recovery. My wife has had it on both of her wrists. If it's neuropathy, I don't think there's anything that can be done.
I took my third morphine - I don't take it very often - but it's not helping. I'm going to take every pain medication I have when I go to bed in a few minutes. Hopefully that will knock me out so I can sleep. Fortunately, sleep isn't an issue for me. My Bipap machine is a big help.
Sorry for the complaining. This is the only outlet I have right now and I needed to tell someone. Thanks for listening. I'm afraid I'm not very stoic tonight.
Jim
-
Like -
Helpful -
Hug
4 Reactions@jimhd I am so sorry you are having a difficult time. Chronic uncontrolled pain is a slippery slope so do what you need to get better pain control. Use this forum to tell us how you feel, and thank you for sharing. No judgement here, my job is to listen and be supportive and occasionally make a joke about your busted mirror. Thank You for telling us how you feel. best, David
-
Like -
Helpful -
Hug
5 ReactionsWhen I went to hit the "like" button on your post I thought, "but I don't like this", but I hit it anyway. Jim, I can't believe what you are dealing with, it is stupefying. Before neuropathy hit our household I had no idea about any of this, that there was this whole world out there of suffering, pain-ridden folks who ask very little in life beyond "please just give me a little bit of relief so I can make it through to the next hour of my life". My wife is going through either a really rough patch lately or just simply the next new reality in her long descent into this hell world that is chronic neuropathy pain. I think it was you Jim who once said that the term "chronic pain" does not even touch the meaning of what this thing is that you, my wife, and practically every one else here is living through. As I write this I am consoled by the fact that you said you do not have trouble getting to sleep. That is a GODSEND. A couple of hours ago my wife had such severe burning in her feet and such a bad headache that she was sure she would not be able to sleep. I had her put on the frozen gel things for her feet that we keep in the freezer and as she wore them I gave her a head massage to bring her some circulation there and then she asked me to massage her legs, which I did, for several minutes. She then went to bed and at least up to this moment she is sound asleep for which I am eternally grateful. This disease keeps you right in the moment, doesn't it? Pain is a right-here kind of thing, its right in your face when its there. Anyway, I could go on and on. As David said, we are here to support each other, and you have my full support and open ears always. You take good care Jim, hoping you feel better when you wake up. All my best, Hank
-
Like -
Helpful -
Hug
4 Reactions@jimhd Good morning Jim. Its 5:45 am here and I'm just waking up to read your post. Looks like it was a rough day for you. I'm sorry to see this however, happy to hear that you are taking steps towards figuring out a thing or two abour your body, presently. I'm sorry the skin punch biopsy was painful and your health has presented more challenges. You speak of the things you did/do regardless. Crazy question.....might there ever be a chance, you take a day off for sheer rest and being good to your body? I get the feeling that would feel like a death sentence to you. I understand you have a lot of upkeep on your property but, just wondering. I myself have learned that I am my worse enemy. My impatience for sitting still and my overachieving self is one bad combination.🥵 I did a number on myself this past weekend by doing simple things that my desire pushes me to do regardless of outcome... like walk at a small farmers market my daughter was working at, rode in the car too long to get there, improperly lifted more weight (the day before) than I should have (5-10 lb. limit)...the list goes on but it's boring. After a painful weekend of I suppose poor choices (even though I'm too stubborn to see as such), I consented to "allow my body" to rest yesterday. I mean bottom line, I hadn't much choice. I still moved about as tolerated but you know what I mean, I actually listened to my body and acted according to its pain signals. I dont know Jim, it's hard to be in such denial about our bodies and chronic pain. We must move it or lose it yet, find the proper balance to do such. I'm wondering if perhaps you ever. allow yourself a well deserved day off? Maybe when it rains or when your kids come by? I'm thinking of you, I want what's best for you and I care. I will venture to say that, you sir, are too damn hard on yourself. Just like me!! 😊 Be well - Rachel
-
Like -
Helpful -
Hug
5 Reactions@jimhd my cyber friend, I'm praying that it is carpal tunnel syndrome and you can have the corrective surgery. I have carpal tunnel in both of my hands by the right more than the left. I had a cortisone shot once but it really didn't help much and I wasn't sure about having the surgery so have just lived with it. Mine still doesn't seem bad enough to have surgery so I just keep hoping it will stay the way it is now. Hoping you are able to get some rest and the pain subsides for you. P.S. - You are not complaining, you are simply telling us how you feel and that is A OK for anyone to do.
-
Like -
Helpful -
Hug
4 ReactionsAMEN to that.
-
Like -
Helpful -
Hug
3 Reactions@jakedduck1 Hello. How've you been Leonard?
-
Like -
Helpful -
Hug
2 Reactions