Hello, is anyone even active on this forum yet? I have neuropathy that is painful at night. I used to get around the pain quite easily by taking the following . 5mg oxycodone, (sometimes 10mg), lidocaine 5% cream, Lyrica ( 400mg) I could
escape the pain entirely or go from a 9 down to a 2 in a couple hours. I slept
at night. Then I built up a tolerance to oxycodone and was using closer to 10mg
during a 24 hour period at night. My family hated it. They feared that I would
stop breathing on it. So I went through a painful withdrawal and now I suffer
quite a bit. I do get some pain medicine but it's not nearly what I was getting.
Some doctors think that I need more, some think none. I just want to feel no
pain. I am looking at bottles of booze and wondering if it might be my next
pain relief unless we come to an agreement to use the oxycodone at night again.
I just can't do without it. I'd rather be addicted and die that way than live a life
of no sleep, suffering and hurting non stop beyond what I can take. Why am I
made to feel so guilty because I have this much pain? Why is society looking at
me as "the drug problem" when I have several conditions that are calling for pain
relief? I have active RA, CIDP, (that's neuropathy plus extreme weakness) I have
joint replacements and am in need of joint replacements. It's ridiculous how I
have become the criminal.
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yikes3
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There is an IV therapy for CIDP. See a neurologist who specializes in neuropathy. If one doesn't help, keep on going to find the one who is able to help you.
Oh I am seeing one at Mayo Clinic. I've been here since November. I don't know if it's true CIDP. I have some of the things people have that have CIDP and I am missing other major things. Vise Versa.. they needed to make a diagnosis for insurance and for medicines. They did do that.
Oh my gosh yes.. did you hear of the IV steroids, the blood products IVIG, Plasma exchange of your own and others ... they take 5000 donors of their healthiness antibodies and transplant them into your body to fight this disease for several days a month.. I sit in with them.. unable to get blood products at this time.. I am taking new stuff unheard of yet for treatment because my insurance is working with them.. I have some donors money wise as well investing - so maybe I will get a kill or a cure. I had mild stuff so far that I did hear of but I have product X in me too.. so that I don't know about but I do know that it's advancing my treatment way beyond the others. I am getting a severe itch in the nerves. It's like something I can't explain.. also that a feeling when your arms are laid on at night with body weight and they start waking up and they drive you insane with a pain that is mild but severe in driving your sensory insane.. I've got that 24/7 and so far topamax/ lyrica and a mild pain reliever are my saving grace plus a product X nerve pill... or part of my infusions.. the nerve sensitivity is getting worse and worse everyday. I could write a book on it but I can't give away all of my secrets.. I think the drug is Cell cept... and it's mixed with everything else making heat and ice cold sensations plus that nerve sensation.. Ive been without sleep for a week now.. the steroids are at peaking point.. I'm not taking them well this week.. panic attacks have me in full force.
I wish I could offer some effective help. I have suffered from painful peripheral neuropathy in my feet for several years now. Although certainly not a treatment, I take the maximum daily dosage of Gabapentin, 3600 mg, just to dull the pain. I now live in the mountains in Ecuador and, although I feel my health in general is better, it has had no effect on the peripheral neuropathy. Back in London, Ontario I had tests done at the hospital and they told me it would only get worse, although given my current pain level, that is hard to believe. My doctor here in Ecuador also said that there is nothing that can be done to relieve the pain.
I know how you feel and sympathize with your depression. Prior to being diagnosed I was incredibly active, doing everything from running a hiking club in the mountains to cross-country and downhill skiing, and dancing for hours three nights a week. To now barely even be able to walk, and in pain always, is very hard to accept. Like anyone suffering from this condition I wish there was a cure.
I can get rid of it 100 percent. My family is not a fan of it though.. I get tired and sleep on the method 13 hours a night. for them, that's wasting away.. it's 400 mg Lyrica daily... 200 morning 200 evening... add 5 mg LidocaineCREAM.... must be CREAM no other formula will stick.. and then add 5mg oxycodone 3 times a day. you will be perfect once again.. the pain pills will level off and you will be yourself again.. It's the perfect match .
Hello. You stated in your first post that you are in severe pain. But you state here that your pain has been controlled and now you are ok. Which one is correct?
gaperpentin makes my ankles swell and my butt get fat.. fat isn't good for me.. I stop walking then and living basically.. 20 pounds on me may as well be 400 - I gain it all in the lower legs and it hurts too much to walk... so I switched to lower lyrica just one pill now ... see we are messing with my perfect formula.. adding topamax ... not as good as Lyrica.. and my family took the pain pills away to something less strong.
I don't have the neuropathy in my feet to the extent that it disturbs my sleep. Although the emg shows differently. I have severe burning on the insides of both my arms to the extent that I can no longer can wear long sleeves, and I live in the Northeast. I was told that it is a vit. B12 deficiency. My labs are within normal range, but my range should be higher. The docs could not care less. I have just given up! I guess that I will have it for the remainder of my life. I have already seen four neurologists, the last one was the Director of Neuropathy in Columbia Presbyterian.
Mayo Clinic isn't too excited about over prescribing B12 either... they think that middle of the road to 70 % is fine... shouldn't overdo anything good, they said. The body should be able to overcome a lot on it's own, they said. These are the best specialists in the entire world telling us not to mess up our bodies even more by over doing those medicines... even vitamins.. the middle of the road specialists had me doing grape seeds, the acids and the B12, B1... like I was nuts. Now they check it twice a year - they are a lot concerned that it fell from 70 down to 35 ish.. in less than 6 months ... but they did put me on Rituxin, steroids, some x medicines, cellcept, and a box full of goodies that I tried and failed with... plus antibiotics and things for panic attacks... Good Lord, I have an entire pharmacy in me right now. I am at the point in my life that if they don't stop this neuoropathy, it will end my life anyway.
It's affecting every part of my being too severely... I have a bunch of things going on because of it. It's not just neuropathy.. neuropathy is the symptoms of another disease.
don't feel like the Lone Stranger. I take 2 each gabapentin 600 4x daily for my neuropathy, some crap for my arthritis, 8 tabs oxycodone (some abuse) 30 mg, and for sleep zzz Quil every nite. If I'm lucky I can work three hours daily. The pain in my feet and legs effect me nite and day. I also am effected by the neuropathy in both arms and hands. I got carpool tunnel syndrome in both hands. Got no strength in my hands.I'll take anything to get me out of pain. Forget the guilt, take the drugs that help you stay out of pain. People don't understand unless they go through what we do. If you are still there pls. respond, Eddie G.
Hi. I know this is an old post but just wanted to add my little bit. I only take amitriptyline as I dont want to take the other stuff. I sometimes use capiscin cream topically on bad nights (put my socks on over it). I have found wearing socks in bed helps with the burning and sensitive feet. I was diagnosed in 2013 but had had it for years before that. The neurologist then said the pain would ease as the nerve endings died and that does seem to have been true. However what he did not say is all the other effects. My mobility is now very poor and I usually use a scooter to get around, my balance is crap, I am dizzy, short of breath etc. I recently managed to get referred back and between the cardiac, the respiratory, and the neurology consultants they have finally told me that all this is due to the neuropathy which is now affecting more than just the sensory nerves. No one can tell me anything really about progression and there is no known cause for mine except perhaps genetic. I dont have diabetes and was always reasonably fit.
I don't condemn you for the drug companies enticing us into relief. Upping the dosages are a given over time. I'm sorry you suffer so much. I haven't taken anything (4years now) but ibuprofen and my neurologist prescribed GABAPENTIN. But that's not the *miracle* solution. It does help calm my feet at night so I can sleep. Yet, I still get up in the morning and feel my feet have no grip, and debilitating pain. I walk it out, and continue with my day.
You are not a criminal!! You are suffering, and whatever works for you, so be it!
Yikes ,I m so sorry to hear how bad life has became for you .Spending sleepless nights and still having nephropathy .May Almighty God heal you and make you better
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