Hi everyone. I am new to this particular site, but I have posted before on the crps site. I apologize in advance for the length of this post, but I have had problems for years and have alot of issues. I am a 48 yr old female, very healthy besides the following.

I have had bulging disks in my neck, along with degeneration and lots of pain and stiffness for the last 17 years. Lots of treatments through the years, such as injections, pt, etc. Learned to deal with it, along with taking meds. Fast forward to 5 years ago. I fell very hard, landing only on my right hand. After about a week, my arm was very sore, and limited rom. All of my pain was felt in my bicep. Saw an orthopedic dr, had an MRI of that shoulder, and was told had multiple tears and would need surgery. I had a shoulder decompression in march of 09, and it did not help with pain. By now I was having pain whether moving my arm or not, with pain also radiating down the arm. Because my pain was in my bicep area, Dr decided to do another surgery, this time on the bicep tendon. After 18 months of pt, absolutely no improvement at all. So we decided to do one more surgery, this one another decompression. Again, no help. So I was told that this was likely to be the way it was in that arm. At this time, the arm was always hurting, moving or not, and I lost about 50% of use in that arm.

In Dec of 2011, I woke to a very sharp nerve pain down that same arm. Neurosurgeon said 2 disks needed to be fused, and had an acdf c5-6, c6-7 in April of 2012. By the time of the surgery, the nerve pain had gotten less severe, but was still having my other, now normal, pain from my fall and surgeries. When I woke from my fusion, I now had the sharp shooting nerve pain, but now in my OTHER arm, the left. Until that point, I had never had any pain at all in that arm. When I saw my surgeon that night, he told me it was normal, and would go away. At my 2 follow ups in the week after surgery, he again said it was normal. I asked him to explain how that was normal, but he just gave me an rx for steroids that didn't help. My ins Co would not okay another neurosurgeon opinion for 4 months, and was told that I had stenosis and radiculopathy in the left arm. So again, I was told this was probably how things would be.

So now, both arms were identical in terms of where the pain was coming from, the amount of pain, and they had exactly the same rom as the other. All of the pain seemed to be centered in the bicep, with radiating pain down into the forarm and palm of hand. It was constant, never not hurting.

Almost 4 months ago, the day after x mas, things got much worse. I woke to pain in many places. Besides my usual arm pains, I was having a jabbing, stabbing pain in both jaws, my right hip, my right buttock, right thigh and leg, and even more than usual pain in both arms. This really bad pain lasted non stop for about 3 weeks. I was so exhausted. I could only lay on the couch and take my meds. As tired as I was, I could not sleep. The pains would wake me up, but I felt like my body just couldn't fall asleep. I would even have the same 2 or 3 areas on both arms hurting at the same time all through the night. I just felt like everything was broken. There was at least 5 places that were always hurting. About 3 days into this all over pain, I started getting burning everywhere. Arms, legs, face, scalp, torso,eyes, nostrils, ears, and back.

I finally had my neurologist appt last week after a 5 month wait. At this point, my symptoms are pain in both arms, but even worse than before, my right leg how hurts most of the time and it feels like the same pain that I have in my arms, I have burning everywhere constantly, left hand is colder than right, my right foot is colder than left, and I swear it feels like I have water running down my right leg at times. About the only place I don't have pain is my left leg and I have never felt pain in my feet. The neuro wants me to have MRI of brain to rule out Ms, and am going to have another nerve conduction test. At this time, she is thinking snf is what is wrong. I asked her about rsd/crps. She said though it sounds like it, rsd does not spread so it couldn't be. From what I have heard, many say it does spread, but I didn't question it. I see her after all of the testing, and will go from there. Because my appt is not for 3 more months[ she will be on maternity leave until then ], I thought I would see if anyone had any ideas. I really just want to be going in the right direction. I have also been checked a few years ago for fibro, but didn't have any of the tender points. I guess my biggest question is why I woke from surgery with my left arm hurting just like my right had before the surgery? Then to be told that was normal. I did have a CT of my neck last month and I do have bone spurs, but those were not there 2 years ago when I had my neck surgery, and my symptoms started before that.

As far as meds, I have taken gabbapentin, lyrica, and I tried cymbalta but had a bad reaction. Nothing ever seemed to help my arms though. I also take methodone and oxycodone for pain. I have taken those for years and they do give some relief, but it never goes away. I have pain every second of the day, mostly in my arms, but am very thankful to have meds for it. I have also been diagnosed with hypothyroidism, anemia with very low iron, and very deficiant vit d. I have been on meds for those issues foe over a year. My recent bloodwork all came back normal except of course for the above.

If you have read this long post, thank you. If you have any insight, I would love to hear from you. If there is something I can be doing to keep my leg from getting as bad as my arms, I would love to hear about it. I know many are much worse than myself, and I know things could be worse, but I am just wanting to see what anyone might have to say. Thank you.





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Rory47,

I have started having issues similar to yours and have been doing much research. Had previous surgeries for TOS plus complications requiring 2 further surgeries. These surgeries did result in some permanent nerve damage because of encountering certain nerves within the surgical site, I was told by my PCP that nerves were overstimulated at the surgical site and as a result my pain is amplified, likely Fibro without the tender points. My pain too is in various places throughout and currently my PCP has me on 30mg generic Cymbalta....does not do too much....he's being conservative I guess.

Along with that, I did research on Fibro & found research by a Dr. Andrew Holman.... Positional Cervical Cord Compression or PC3. If you google his name or the title of his research there will be information and papers he has written about his theories.

Recently, I had the type of MRI done that he is recommending in his research and will be getting more than 1 opinion as the 1st neurosurgeon saw, I believe was not willing to accept that what was found could be causing my problems even though it clearly stated that there was "near abutment to the spinal cord at several levels". My pain is worse when I lay down, where so many people say their pain is better when laying down. As a result, I believe that nerves are compressing at levels that even though I am able to sleep, I wake up often & when I finally force!! myself to get up (11 AM usually) I am in bad shape with pain, nausea, & ill feeling for several hours and often throughout the day.

Lastly, a relative of mine has chronic pain (she has a history of scoliosis and just within last 2 years issues caused from a car accident....has had multiple surgeries, meds, etc.) and is now going through P-Stim therapy and has been able to reduce her meds by 1/3 and is feeling better. This might be a good for you to explore as your situation sounds like any further surgeries /PT is not option!

chloecasey

Hi chloecasey

I know what you mean about doing research. I have done my fair share of it, also. I feel the same laying down or standing up. This pain in my arms is relentless. I woke this morning to 4 different areas on the left and 2 on the right that have been constantly stabbing all day, these in addition to the usual pains I always have in the bicep areas of both arms. It truly feels like my left hand is broken, its that sore.

My Dr is thinking that my neck issues are not responsible for these pains and the burning throughout my body. The more I read about snf, it does sound like my neuro may be right. Does snf cause temp differences in the arms and legs? Because I experience that. I remember during my 2 years of pt, my therapist would always comment that my right arm, which was my bad one back then, was alot colder than the other arm. I don't have any numbness or tingling though, its just burning and lots of pain for me.

Thanks for listening, and I appreciate any responses

I forgot to ask the questions after my long post the other day. From what I have read, it sounds like most people with snf have tingling and numbness, and I do not have either. My biggest issues are pain that is so intense it feels like bones are broken, burning, and temp differences between my left arm and right, and my left leg and right leg. Are there many of you without numbness and tingling that have been diagnosed with snf? I feel like my neuro was just throwing out an initial dx of snf because she didnt know what else to say when i asked her what she thought was wrong. I have my nerve cond test next month, then see the neuro again in July. I really want to know what's going on with me. This has been a very long almost 6 yrs now.

Thank you for any insight anyone may have!!

I've been diagnosed with sfn and have never had tingling or numbness. My worst symptom has been burning on the soles of my feet; also prickling feelings on my arms, "folded sock" sensation, feeling of cold draft on legs, one and/or both hands being icy, and patches of baldness on legs with cooler skin temp and loss of light touch sensation in the bald areas. Also autonomic symptoms, mainly sweating abnormalities. So no, I don't think numbness and tingling are required!

I was dx'd with SFN in Sept 2013 after having 6 chemo treatments that ended in March 2013. Having diabetes didn't help either

I had the nerve cond study done and the dr (that is all he does is these tests) smirkingly told me there was nothing wrong. Never mentioned SFN which I didn't know about anyway. Doing my own research and seeing several dr's I asked the foot and ankle dr to do the skin biopsy..which is a very easy test to determine SFN. The test came back positive and I just wanted to go to the dr that did the nerve test and smush the results in his face......and to tell him that he should tell patients about SFN so they will know what other directions they can go in. The nerve cond tests usually don't show SFN.

I do having tingling and numbness and any other symptoms you can have with neuropathy. Everyone if different and can present in different ways. This started in my feet then hands......now also in upper right arm and some days in both legs and both arms.....boy are those the fun days

Not sure any of this info will help but just wanted to chime in (with my words that aren't even words...lol)

Please keep us posted.

Debi from Georgia

Dogwalker and StGeorge2013, thank you for your replies. I really appreciate them. While I realize that everyone presents with different symptoms, I have a few questions that even my Dr can't explain. Before I fell onto my right hand over 5 years ago, Ihad no issues with any pain besides my neck. So then after I fall onto my hand, the pain in my right bicep area and severe lack of movement set in after a week or two. It has not gone away for a moment. Then after neck surgery 2 years ago, I woke to the very same bicep pain in my other arm. Again, the severe pain has not stopped since that day. And the fact that both arms are exactly the same in terms of lack of movement, and the very same pain in the very same places. That's what puzzles me the most. Since I do have alot of burning, I am wondering if I do have neuropathy, but maybe also something else going on along with it that would explain my arms. The only way I can describe how my arms feel is to imagine someone behind you has your arms twisted up behind you, and then about 20 times a day they yank even harder. Asking me to move my arms is like asking someone to bend their finger back to touch their wrist. Its not supposed to happen. That's what both my arms feel like, every day, all day. And since my right leg is starting to sometimes have the same kind of pain as my arms, I am concerned that my leg will end like my arms. I would not be able to walk. As it is, I have pain in my arms even when i do walk, but I couldn't imagine walking on legs with that pain.

So could snf just happen to show up after an injury, and then spread to my other arm after a surgery?
I did have a nerve cond study 18 mo ago, but all was normal. I will be having another son. Again, everything feels normal, besides widespread pain and burning. I realize that I willj ust have to get my dx in good time, but I have been waiting almost 6 years . When i go back to the neuro in July, my next follow up after that would not be until Nov since she is so booked up, and in the meantime I just get worse and worse it seems. Sorry for the rant, but I am worn out in every way. Thanks again for any wisdom!