Undiagnosed/ CIDP, PN? Pain is out of control!
 

Hello all
I hope you are doing well today. I am a member of the forum and had discovered it as I have pudendal neuralgia, a nerve condition affecting the pelvis. Well, since last year, I have been able to "control" or manage it by self exercise, physical therapy, gabapentin, elavil and valium. Now, I thought that was the end of it, until we were hit by a car in november of last year.. and I have been going downhill ever since. I have seen a phsyical therapist for awhile and now, the drs dont know what is wrong with me.
My most severe symptom is constant 24/7 back of the leg pain ( mostly thigh) which feels like a deep ache to the bone all day every day. It almost feels like someone is taking a knife and strippig the flesh fromthe back of my leg. Visual not pretty huh. My quality of life sucks, and I am finding more and more of me laying on the couch as walking, standing and such causes pain. There is weakness also.
I am seeing a rheumatologist next week as I also have arthritc symptoms such as morning stiffness and other things. The leg pain has become unbearable. I am on oxy 20-30 mg and it doesnt releive the pain enough.
I am wondering if this is peripheral neuropathy in my legs or CIDP?
I am going to the Mayo clinic in Jacksonville in 2.5 weeks, and will be seeing a rheumy first, as I have tested positive for ANA, and I know CIDP is autoimmune, so I will ask. I also want to have the EMG/NCS done, and get a diagnosis.
So question is, with leg weakness and severe leg pain could this be either PN or CIDP? I am hoping and pretty sure I will be seeing a neuro there too and tests will be done. I just cant live like this.
Another question, I take 3,000 mg of Gabapentin and 37.5mg of Elavil. If it is PN, why wouldnt these drugs work or help... would it be time to switch to Lyrica? I am seeing my GP in a week and will need to increase my pain meds as I think after a year there has been a tolerance build up.
Believe me, I have tried the natural approach with omega 3, b12, b6, ginger.. etc. . for inflammation.. but nothing working on that front.
So thoughts on the PN or CIDP? thank you very much.
jess:)

I haven't got much to offer here.

But I will say this. On vacation this summer I had 3 miserable days where my good right leg went into screaming pain. I thought I might have over-extended it, but I don't recall doing anything to cause it. It hurt all the way down the to the knee like a knife--and I could barely walk. You know what it was? Because of the cold, and because our large frig was not working right, we were living out of a small trailer sized one--this meant we were not eating like at home.
I figured out it was my calcium level when I took some Maalox instant dissolve (1000mg cal carbonate) for a bit of heartburn, and within 4 hrs, the pain was GONE! It was some muscle spasm combined with a nerve? going haywire. At home we have yogurt every day, and my Lactaid milk with Calcium added, and fresh veggies etc. Up there we were living off sandwiches/oatmeal/soups/spagetti/fresh fish.

It sort of was a wake up call about calcium/magnesium levels. I was getting my mag from the almonds I was snacking on. But no calcium!

So make sure you are getting the calcium you need, and that you take Vit D to ensure its absorption, or at least get outside for 1/2 hr a day between 11am and 3pm.

It seemed like such a simple thing, but my thigh pain was far from simple!

Thanks Ms D. I supplement with calcium and magnesium everyday, as well as 3,000 iu of vitamin D, when I am not in the sun.
This severe pain has been going on non stop for 3 months... I wish it was something like that. I will be headed to the mayo in Jacksonville, and probably have the nerve conduction/emg done and see if it is neuropathy. I just need answers.. I have been suffering with this and my quality of life has gone down the tubes!
At least if it is PN or CIDP I will know what treatment to try, as of now.. I am on painkillers that arent even cutting it. Thank you for your thoughts though. :)

Have you had an MRI of your knee?

Have you tried putting a Lidoderm behind the knee, on the thigh side of the bend?

Knee pain can refer like you describe.
When I had mine, it was the front of the thigh...deep pain.
But if you have a ligament damaged in the accident, the pain could refer elsewhere. It was odd that most of my pain back in those days, was not in the knee but in the thigh instead.

There is a pressure point on the lateral side of the knee just about an inch or so from the bend. If you sit with the knee bent and press this spot....it is very painful? That is the meniscal trigger point, and mine was very tender when I had that ortho problem.

My knee healed up finally---after several years ...but I don't have the same degree of pain I had back then (it is a bit stiff and does not like stairs, and I cannot do bends with it). The MRI did not show the suspected tumor/cyst the Ortho was looking for, but did show synovitis. So I had a steroid/Marcaine shot under the kneecap, and that helped a little.

Mine hurt so much at night, I worried I had bone cancer! So don't discount the knee as a source of problems, esp after an accident.

I am sorry Jess that you are having to deal with this. I do relate to you on a few things. I have muscle problems in my pelvis that lead to extreme, agonizing female pain. After going to a gynecological pain specialist, I was diagnosed with this muscle disorder. She prescribed physical therapy as well, and I went to the renowned pelvic floor therapy center in San Francisco. About three months into this therapy I was so much better! Then four months later I was hit with body wide PN. It is still ideopathic. I also have arthritis problems like you that are horrible in the morning. I have a lot of pain in my lower left back, left hip and knee due to this. I was wondering, could your leg pain come from anything that is stemming from your pelvic muscle problem?

Thanks Hope and Mrs D. I am sorry for your pain as well Hope. I am glad that PT is working, as what it was for me, was the pelvic floor muscles were tight and impinging on the pudendal nerve. I still get flare ups, but nothing much right now.
I have a positive HLA-B27 gene which could mean some type of arthritis, so I will be seeing my rheumatologist next week for that. Morning stiffness is bad.
I dont know about my knee, but the pain is right below the buttocks and then the entire back of my thigh. It is almost debilitating. I am hoping Mayo will be able to figure this out, because this waiting for 6 weeks, 3 months etc around here for various doctors isnt cutting it. I already had one year of my life messed up with the pudendal neuralgia ..and in a sense I feel like I am back there. Extreme pain, no diagnosis... going to doctors, it seems never ending, and a life on the couch isnt acceptable to me.
thank you for your help:hug:

Hi. First I am sorry for all you are going through and hope you get some answers and relief asap. I don't know anything about CIDP. I have PN but also RSD. I wonder if you have done any research on RSD? I thought maybe you were on that board but maybe it was this one. I am glad you are going to get an emg/nc. My 2nd one dx me with PN but my pain level they feel is due to the rsd. I have 24/7 pain. It feels like the tightest band around my ankle/often like someone ran over my foot/ankle with a car if I had to explain it. I have also explained it as something ripping and extreme tightness. You may not have this just a thought if your tests do not dx something else.As for the meds though I am on a better combo now for awhile I was on many where I was crying from the pain still so what works for one may not another and is going to depend on dx. Have you had an mri as well of your spine to make sure it is not coming from there? They did that for me of the brain and spine cause often leg pain can stem from there. Take care and I wish I had more to offer.

Jess,

I have that same type of horrific aches in my thigh. I switched to Lyrica from Neurontin and it helped greatly. I felt I finally got my life back. I am a big excerciser and was a runner. My legs were very weak and I always felt like my right leg had a stone in it or something because if felt so heavy. The lyrica really helped with all of it. I can't run, but I can take aerobic classes and work on an eliptical.
Hope this is helpful, Laurie