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!