neuropathy ? RSD? ??
 

Hi, I'm new to all of this and was referred to this forum. I'm not sure what I have...

I have been diagnosed with neuropathy though I only got a symptomatic diagnosis from the ER. I don't have health insurance so I have not had any tests run yet. I do have an appointment with a volunteer clinic in 2 weeks and I'm hoping they can get me in to see a neurologist quickly. It all started 3 years ago with tingling and occasinal numbness in my left foot after I smashed my little toe on a table leg. Now, in the last 4 months after a fall walking into a store with wet floors I have intense burning or cold numbness in both feet, horrific pain, as if there are little hard shelled creatures rolling around in both legs and excruciating vise like pain in my genitals. I'm only assuming that all of this is related to the toe smash and the fall but I really don't know anything for sure. Maybe I need to see an orthopedic doc..? I have been on 900 mgs. of Neurontin for 3 weeks but it doesn't seem to be helping and is making me very irritable. I don't know whether to cut it out or double the dose as I read that other people are taking much higher doses, some with success. Does that mean I'll be twice as irritable. The overall pain is worse on my left side and I walk awkwardly with a definate limp. I have found that icy or hot circulating foot baths, depending on how my feet feel, with epsom salts, provides relief for a decent amount of time and sometimes light massage if I can stand it improves circulation. I take an extended relief opiate called Opama 2 or 3 times a day and I find it helps better than other pain meds I've tried and it doesn't nterfere with sleep. I also take flexeril, a muscle relaxer, at bedtime to help with sleep, which is hard to come by these nights. I find some relief but I do feel 'hungover' most of the time, but it seems a small price to pay compared to the relentlous pain. I have to wear something loose and comfortable on my feet at all times, either lined slippers or plastic clogs with socks, regardless of whether my feet are burning or freezing. I don't want to be bound to all theses medications for the rest of my life, but right now it's the best I can do. I am reading lots about vitamin B12 and other supplements that can be helpful. I'll be getting tested for deficiencies at the clinic. This disorder, whatever it is, has disabled me to the point where I cannot work and sometime I can't even drive. Fortunately, I have a very supportive sweetheart who understands what I'm going through,as I do with her, as she is on disablility for liver problems and fibromyalgia. Having that mutual support is crucial and helps keep the depression at bay.
I'm glad I stumbled upon this site. A lot of good, caring people. Would appreciate any input regarding what I described above. Thanks, John

Welcome...and I am very sorry to hear all that you are going through. I hope that you are able to get some answers at the clinic in a few weeks...but RSD is often very misunderstood by doctors and medical professionals. Many people go years without a firm diagnosis and even once we have one there always seem to be doctors out there who want to tell us we DON'T have it (the same ones who say it doesn't spread or can't be anywhere other than a hand or foot...yeah...they are out there with their wacky theories).

I understand your feelings about the meds...I personally have gone off most of mine that were for the pain because I was concerned about the long term affects they would have on me. But we all need to do what is right for us as individuals and what allows us to get the best quality of life.

For me...the single biggest thing that has helped my RSD up to this point has been the physical therapy. It's very hard to do and hurts like all get out...but it has given me my life back. I was stuck in a wheelchair and couldn't do hardly anything for myself...now I am able to be on my feel all day long (still need to use a walker) and can go out as much as I please. The pain is still there...but the function is back and I will take it.

Another thing which I just started a month ago is tDCS. This has been one of the first things in a long time that is actually helping with the PAIN and the allydonia. It is pretty inexpensive as far as treatments go...the equipment only cost me $300 or so and I do the treatments at home by myself. There is a thread on here about it and I highly recommend reading through it. I don't know if you have RSD or not...but if you do I would make this one of my first treatment options. It is not invasive and has little to no side effects so it's definitely worth a shot given the number of people who have found relief with it. Also...at $300...it is much much cheaper than just about any other procedure you could find out there. Not to mention the savings on prescriptions if you are able to come off of some of those meds, right?

Good luck to you...I hope that you find some answers and some relief soon. This really is a great site to find support and understanding from people who know what it is like to go through what you are dealing with. Good luck.

Thanks for your support
 

You're one of those good caring people I was refering to. I'm glad you are finding some things that are improving the quality of your life. What does TDCS stand for?
I have started to make myself walk as far as I am able, usually about one half mile round trip, each day. Even though it is difficult I'm sure it will help me in the long term. Also, it gives me a feeling of accomplishment and empowerment so that I'm not just sitting around feeling sorry for myself, which has been my tendency over the last couple of months. Hopefully, I'll have some answers in a couple of weeks and a direction I can pursue towards beating this thing or, at least, minimising it as much as possible. Thanks for your information and words of encouragement. Good luck to you.

tDCS stands for transcranial direct current stimulation...sounds scarier than it really is...lol! Essentially I think of it like a tens unit that I put on my head instead of my rsd areas (though I have one of those that I use as well).

The walking is a very good things and it is definitely worth it to keep it up if you can. Most of us get into the worst trouble when we stop using the RSD limb or guard it too much...then it just becomes a much harder cycle of pain to break out of. It helps me to have a routine that I do each day which includes the hot baths with epsom salts (twice a day I have been doing it recently) and those seem to help me to get started in the mornings.

Take care and keep us posted.

I would second tDCS. Non-invasive and low cost to try out. Pain medication is never without side effects and if this doesn't work, at least it doesn't do any harm. Aslo, if it works for you, you will save plenty of money.
But be aware, in some people it works, in others it has no effect at all. Why is currently unknown.

Steve