I am new, very scared, and have some questions please
 

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

I am not going to do justice to your long post in this short reply, but I would say that the Neurontin is primarily found useful for the typical burning and electrical zaps of PN. If you don't have those symptoms, I don't know that it will help you even if you do have PN.
You can have quite severe leg pain as a symptom of advanced neuropathy, mine is hereditary, but the typical symptoms usually accompany or precede that. Your case does sound complicated. Did they do an EMG/NCS?

As Susanne said your case does sound complicated. EMG/NCV testing might be in order if you have not had it done. Hope you find an answer.

Thank you both for your replies. No, I have had nothing done yet. The rheumatologist saw me for 5 min. As soon as he heard me say the word "burning" he insisted that it was small nerve peripheral neuropathy, because it is a finding with fibromyalgia. I did ask him about the mild spinal stenosis that the MRI showed in 2012, and he basically said you could do an MRI on 100 people and see those same findings. It doesn't cause what I'm feeling.

Even if I do have PN, I agree that I think more testing any work that needs to be done to 1) confirm that I actually do have PN and not something else (or possibly have PN in combination with something else and 2) confirm what type I have if I do have it, 3) tests for other underlying things like pre-diabetes, vitamin deficiencies, thyroid etc. and treat those if needed.

I was very unhappy with the way the rheumatologist handled the situation.

I think I will also pursue seeing a spine specialist, if nothing else, just to not leave that stone unturned. Maybe I have some things going on from lumbar stenosis and also some things from PN. I will also go on the daunting quest of trying to find a neurologist who will take the time to do the appropriate testing and work with me to figure this out.

What keeps nagging at me is that I have not experienced the symptoms in the typical pattern that I have been reading about: burning in the toes and feet first, then working up the leg. My first symptoms have been with the back of my thighs, then pain in the heels after standing and walking, and now the pain over the thigh and butt bones from pressure being applied. It doesn't fit the typical sock and glove pattern I have been reading about. However, I do realize that the way PN presents can be atypical and different for every person. That is why I was asking for some feedback on experiences that you guys have had.


I do know that standing makes the back of my legs and bottom of my heels hurt more. Is that a common finding in PN? that standing makes things worse?

Thank you again for taking the time to respond to my concerns. It is much appreciated.


Sharon

The pattern of symptoms you mentioned--
 

--implies a neuropathy, but possibly not of the kinds we most often talk about here; from my prespective this does not look like a neuropathy secondary to a systemic body-wide condition (i.e., diabetes, toxin, deficiency) but rather one caused by mechanical forces, such as nerve compression.

Not that underlying conditions might not make the symptoms of nerve compression worse (see "double crush hypothesis"), but given that positional changes and pressure changes seem to have considerable effects on the degree of symptoms, this sounds like there may be compression on nerves that go down the legs. The trick is to find out where it's coming from.

It is certainly possible that there is something going on in the lumbar spine that might be contributing to this, or even within the lower sacral spine nerve roots. From what you describe, though, I'd take a look at the sciatic nerve and its branches as well. It is actually quite easy to compress nerves in both the lower and upper leg regions--there are a lot of choke points at which pressure can be applied, even by overdeveloped muscle and fascia (see "piriformis syndrome").

Some articles to look at:

http://emedicine.medscape.com/article/1234809-overview

http://www.emedicinehealth.com/sciatica/article_em.htm

http://emedicine.medscape.com/article/87545-overview

Good morning Sharon :)
 

Can I just be bold here and say that a Rheumatologist has no business diagnosing anyone with Neuropathy? Go to a Neurologist! But tread carefully - I hear rumors there are intelligent, thoughtful compassionate neurologists, but they can be hard to find. =)

Nerve stuff is scary. I hear you. My Rheumatologist tried to blow off my nerve problems, but I reminded her gently that my father (who has autoimmune stuff up the wazoo) has over the years gotten new heart valve, a new kidney, a new PANCREAS, but is barely functional because he can't get a new brain or a new set of nerves**. Treat yours with loving care - you only get one set!

**(true story - you can't make that stuff up!)

There are not enough words of gratitude for me to express to you how thankful I am that you guys have taken the time to answer my post. This is a very anxiety producing time for me as I search for answers, and your support has been invaluable.

As I have been doing more research myself over the last week, the idea of a sciatica has become more and more of a viable explanation in my mind. The initial pain presented itself as aching in the back of the thigh and knee after periods of sitting. The heel pain only started a few weeks ago, and that came after periods of standing and walking. It just hasn't presented itself as the typical SFPN that I have read about.

So, glenntaj, your mentioning that it sounds like this to you actually gives me some validation of what I was thinking.

Next week I have an appointment with a pain specialist. In addition, I found a peripheral neuropathy expert (neurologist) here locally. And I discovered that he just happens to be a very friendly associate of my husband (who is in the medical field, but not a Dr.) This neurologist has told my husband he will work me into his schedule as soon as possible.

I think that possibly I will need to also see a spine specialist? Do you think that is the appropriate person to look into a possible sciatica?

I have experienced the most excruciating pain of my life in the last few weeks. I have the utmost respect and compassion for those of you that have been living with this for a very long time.

Again, thank you all for your help and input.

Sharon

It certainly does sound like sciatica. I had surgery for it in 2000, very minor, removing material from a ruptured disc that was pressing on the nerve. As I now have scar tissue, at least two ruptured discs, and spinal arthritis I get flare ups from time to time. I have had good results with a brief run of steroids to reduce the inflammation, but the original surgery was very successful as I am free of symptoms most of the time. My neuropathy has advanced enough to mimic many of the symptoms but there is still something different about the sciatica attacks as I feel an ache in the lower back and the pain wraps around under my foot on the left side. It does all run together and get confusing.
Your neurologist should be able to tell from an MRI if you need to see a neurosurgeon. You sound like you are suffering quite a bit. I was on bed rest for several months before they decided on the surgery, I could hardly walk. I hope that you get some better answers soon. I really do not see how a rheumatologist would be able to diagnose you from such a cursory exam.

Hi Susanne,

Thank you for your reply. It is encouraging to know that you had some successful resolution of your sciatica. (Assuming that is what I have.)

You mentioned that you also have neuropathy that has progressed to mimic the sciatica. May I be bold enough to ask if these are two separate conditions? Is your neuropathy from nothing else? Sorry if I'm being too nosy.

Again, thank you all for your feedback.

Sharon

Some PN symptoms to eliminate
 

Hi Sharon as I read your initial post it sounded like sciatica so yes ask your spine specialist. I have peripheral neuropathy - from chemo and initially my feet felt like they were sand bags, I could walk but with difficulty. Eventually my feet dropped, my feet went numb and I felt I had wooden legs. That was the lead up to pain behind and in front of my knees but this pain is due to muscle strain and weakening. I did not have pain in the back of the thighs at all and lying down is a relief for me. I think you are approaching your predicament with great clarity and common sense. I saw a neurologist who did a nerve impulse test and I also see a physio with a chiro who do DNS therapy with me. I do not take any pharmaceuticals except oroxin (but that's for thyroid problem). You are in good hands, keep calm and best wishes for a healing solution

You really can't be too nosy asking for information on this board! Of course I will tell you. I have CMT, a hereditary sensory motor neuropathy that I have had all my life. It is untreatable and progressive and I currently have very severe pain in my arms and legs, visible muscle loss, and numbness from hip level down, as well as in the last two fingers on each hand. That is why I said it can be hard to tease out the neuropathy from a sciatica attack. Ten years ago before the CMT had advanced so much it was very distinct and I still remember that feeling so can usually tell if it is my back that is causing the leg pain vs. CMT. Also I have had severe sciatica with my period since I was a teen, and I still get that.
Always feel free to ask away here.
Susanne

Again, thank you all for being so generous in sharing your experiences with me. I have had fibromyalgia for 15 years, and thought I had some concept of living with chronic pain. But after what I have been experiencing the last few weeks, that fibromyalgia pain seems like child's play. I have the utmost compassion and respect for those of you that deal with this degree of pain every day for years on end. I am praying that this is an acute episode of sciatica and I can get it resolved, and go back to my baseline level of fibromyalgia pain, which at this point I would be thrilled to have! LOL

I have an appointment with face pain specialist tomorrow if the snowy forecast does not cancel that, I also have an upcoming appointment with a peripheral neuropathy specialist. I am hoping that these two doctors will be able to help me differentiate what type of neuropathy pain I'm having. Depending upon what they tell me, my next step will be a spine specialist or neurosurgeon.

Again, thank you all for the support and embracing a scared newbie. I have you all, daily prayer list, and pray for your pain relief, feeling and peace.

Sharon

so.....find a muscle and nerve "diagnosing doctor only". These kind of doctors only run extensive tests, I mean extensive tests. All my results came back normal, as they are supposed too, except the biopsies. All of them came back showing "small fiber neuropathy". He then sent me on my way saying I just have to live with this, there is no cure and the best option is to find a "pain management" doctor who will prescribe meds to help you get through this. My small fiber affects me from my shoulders to my feet, and also is now affecting my bladder. For me, resting is the worse thing I can do, seems laying down makes it worse. I live day to day not knowing how I will feel when I wake up. I do not take the narcotics that they prescribe. However, I do take a medicine called Gralise (it's in the gabapentin family). This has made me 50 percent better. Remember all tests will come back normal until they do the biopsies which will then show small fiber. Hope this helps

I thank you for the reply and information. I will head all advice given here and try to find the correct diagnosis and treatment.

you have my empathy and compassion for your daily pain. I pray for you and for everyone who suffers for healing and peace.

God bless us all and our families as we try to cope.

Gentle hugs, Sharon

I hope the weather allows you to get to the doctor. May I ask why you are fearful of Neurontin? If you start slow with the dose it will lesson the side effects.
Also I remember when I was new and felt I did not fit all the symptoms etc that I was reading on here or on websites. From the years that have passed my condition and symptoms have changed where I do fit more but in my opinion often many people who are hard to dx especially don't fit everything that is stated in the condition. Not sure if I am making sense?
I hope you get some answers and relief.

I am scared of taking such a powerful medication that can have serious side effects. I do realize that starting off slow and tapering up is helpful, but I would like to get a definitive diagnosis before I determine which treatment is the best. I have read that Neurontin is really helpful for the hot burning and sappy feelings, which I'm really not having. I have mostly an ache that does have a burning element to it. But I'm not having zaps or stabs or electrical shocks or feeling like my skin is on fire or numbness.

I have an appointment with a peripheral neuropathy specialist in two weeks. So I guess until then I just manage the best I can. Hopefully he can help me find the correct answers and I will go from there.

Thank you for taking the time to respond. I really do appreciate all the information that all of you have given me.

Sharon

Obviously this is a personal choice about taking meds but some could help you. For myself and though I have tried most of these nerve meds and am starting new course of meds I try to stay in the day with my fears. Also if you have support system like friends and family surrounding yourself with them when you start can help. So many meds list every possible side effect. When I was Neurontin I slowly increased and did not have any major side effects other then like pressure in my head for awhile and a little off feeling. Again I am not saying to take it or not just some thoughts.
I hope you get some direction and answers at the appointment. The unknown waiting for diagnosis is a hard time I do know that.

Hi everybody,

I hope that you all are doing well and your pain is not too bad. You guys were so supportive and helpful to me that I wanted to check in and let you know what was going on.

I found a very compassionate pain management Dr. and went to him with my story. He ordered a new MRI of my lumbar spine which the results of are not encouraging. There has been quite a progression of my spinal problems since my last MRI 18 months ago. I have severe spinal stenosis both central and foraminal and severe facet arthropathy in a few places. So he definitely confirmed that the pains I'm having in my legs are nerve pain from the spinal problems.

Five days ago I had six transforaminal nerve blocks done with the cortisone. I was so very hopeful that this would help, but it has actually escalated my pain back to the unbearable level that it was at a couple of months ago. And the tramadol and Tylenol are no longer taking care of the pain like it did previously. I knew that there was a chance that the first injection would not help, but I had no idea it could escalate my pain this badly. All the progress I have made over the last eight weeks by being on anti-inflammatories, icing, resting, I have lost that progress and am now back to ground zero with pretty terrible pain. I have left a message in the doctor's office expressing my concern about this increased level of pain after the injection but they have not called me back yet. It is only Monday, so if I don't hear from them tomorrow I will call back. I don't think I want to get the second injection in this series if it's going to increase my pain even more. I've also decided to be proactive and see a neurosurgeon to get my back evaluated in that regard.

I thank you all for your encouragement and help and continue to pray that we all can manage our pain and live our lives, if not the pain-free.

Kindly,

Sharon

Hi Sharon,
I hope the doctor calls soon. I'm also very sorry that you are going through so much pain. Please let us know how you make out with the doctor if your up to typing.
I hope your pain level lowers quickly!

Similar Pain
 

I started with the burning feet and big toe pain. That particular pain has subsided but the feet still burn especially on cold floors. Now I drove 9 hours the other day and developeddevelopedpain Iin my calf and knees. I also noticed walking last Saturday I got very heavy achy legs a first for that was walking over 2 miles a day.
Check with a good chiropractor the leg issue could be an issue he could help with mine helps me even with the PN by keeping my neck adjusted.
I don't know where you live but if close to a teaching hospital try to see a neurologist there they usually are more up to date. I live near Baylor in Dallas so i was fortunate.
Best of luck to you