hello everyone,

I found this wonderful forum while doing some Internet searching about peripheral neuropathy. I am at the very early stages of this situation, and I could use some support and feedback if you can please. (I am pretty scraed.)

I have had fibromyalgia for about 15 years. Over the last several weeks, I have developed a new kind of pain that has never been part of my fibromyalgia. I saw a rheumatologist for all of 5 min. yesterday, and he thinks it is small fiber neuropathy and gave me a prescription for Neurontin and said come back in three months. He did not take much of a history or physical. He just basically said he knew that was what it was based off of what I told him. Now, I am not in denial that it may actually be PN, but I would like to tell you how the pain has presented itself, and see if you think this is characteristic of PN.

For probably several weeks, the first and only symptom I had was pain behind my knee and the back part of the lower half of my thigh, that was a ache brought on after driving for a while or sitting at my desk. It wasn't a numbness, tingling, or any weakness. It was basically a constant ache. I guess you could call it a burning ache as opposed to a muscular ache. It would flare up and hurt for a day or two, and then go a way. This continued to progress to become more and more frequent and more painful. The pain was related to the area of my leg that pressure was applied to when sitting. At first I just attributed it to fibromyalgia pain, but as it escalated to becoming more constant and even hurting at rest, I have come to realize that wasn't my normal fibromyalgia pain.

Over the last few weeks it has also progressed to where my legs do feel very heavy and achy when I stand or walk. Again, the achiness and pain is in the back of my thighs mostly. (not really any calf involvement.) Over the last few weeks I have developed some heel pain, and that started as a general ache after standing or walking for a while. I would say that it is now a burning type pain, and it hurts more and is flared up after standing or walking for a short period. It can continue to hurt at rest, but it will go away if I stay off my feet for several hours, such as overnight sleeping.

The other thing that has developed over the last few weeks is that the aches in my legs are developing over other areas that I put pressure on. For example, I have been spending a lot of time on the sofa lying on my side to relieve the pressure on the back of my legs. So now I have developed an achiness over the side of my leg up high where the thigh bone is. Not as high as the hip bone, but where the thigh bone connects into your buttocks. I have also been spending some time laying on my back, but scooched down, with my legs slightly bent, in order to take pressure off other areas. So now of course I have the aching pain over the butt bone. It's bascially hurting over the areas where pressure is applied. I am having pain at rest now too.

I would classify it as a burning type ache, but not like the muscles are on fire. I don't really have shooting pains, or stabbing pains, and the muscles do not hurt to the touch. There may be some times when the pain is actually in a lesser state that I feel some very slight little tingles, but again not really bad.

So, if you are still reading with me after this long post, I would just like to know from your experience if these kind of symptoms are consistent with a peripheral neuropathy. The feeling of the heaviness and achiness in back of thighs when standing, which makes me feel the urge to sit down or lie down. And then if I lie down or sit for too long, then I have to get up and walk around to feel a bit better. It's almost like I have to keep changing positions frequently. I am not really pain-free at any time right now. It's just a matter of how severely it hurts any given time.

What puzzles me is that I do not seem to have the typical presentation that I have read about: pain starting at the feet and working their way up the legs. I do not have the stocking and glove presentation that I have read about. And while my heels do significantly hurt (not my toes or instep), my biggest problem is the backs of my legs. And I don't really have problems with my calves at all.


as a side note, two years ago I did have an MRI of my spine which showed a mild lumbar stenosis, but I was not symptomatic at the time so nothing was done. I am wondering if the symptoms I'm having could be from that. however, when I read about the symptoms of lumbar stenosis, my symptoms don't really fit that. I don't really have lower back pain or shooting pains from the butt down the leg. And I don't have muscle cramping and I don't have weakness. So my gut is telling me it's not the lumbar stenosis, but I wonder if it would be prudent to investigate that more just to be sure.

I am scared to death of the Neurontin, and I'm not going to jump right into taking that without getting more information and a better work up. I am going to see my primary care physician as soon as I can get an appointment and present all of this information to her and see if she will work me up for those things. She is generally a very thorough Dr. so I do not think I will have problems getting her to do that.

My next hurdle will be trying to find a neurologist who will actually take the time to try to work this up and figure out exactly what kind I have and assist me in figuring out the best treatment plan, and not just putting me on Neurontin right off the bat.


I do have an appointment with a pain specialist next week, and am hoping to see if I can find some pain relieving measures that will help me make it through this process of diagnosis and such. Then once I have all the information I can decide on a long-term treatment plan. I'm just too scared to start on the Neurontin right away, but have not ruled it out entirely

anyway, I know that I just wrote a book and probably bored you to death, LOL. But I basically just wanted to type out the type of symptoms I'm having and see if you experienced folks can tell me if this matches the profile of a small peripheral neuropathy. As I mentioned, I'm in the process of making appointments with doctors to explore this more.

I thank you so very much for your time and your willingness to answer if you can.

So very thankfully, Sharon