I started to get a sun burn like burning on the back of my neck, back of my upper shoulder blades, and sometimes triceps bilaterally (Pain is symmetrical). It has been going on for 4 months now. My skin is very sensitive to the touch and I am always in pain.
I ve taken so many tests over the last year and the only thing they came up with is t-6 t-7 herniation. I was told that wouldn’t cause pain in the area I am describing based of the dermatome chart. I got 2 epidurals in the t6 area and it did nothing or helped minimal. I couldn’t tell as my pain changes in intensity from hour to hour day to day. No pattern I can figure out. Pain can range from a 2 to 8) It usually never gets worse then 5-6. But once it gets to a 4-6 it really bothers me and is very uncomfortable.
I have no health issues other than this. I have no numbness, pins in needs, motor issues, or weakness. Other than this horrible pain I am going through.
I know then main symptom of RSD is allyodia and it usually starts after injury and in hands or feet.
Prior to this burning in my back I had burning in my chest for 9 months. If you look at a thread I posted it explains my history better. I have some type of nerve issue going on and it seems my symptoms are manifesting differently over time.
http://neurotalk.psychcentral.com/thread159222.html
I did not injury myself and not sure when the T6 herniation happened.
Around the time I started to get the back burning pain was when I started on different SSRI/SNRI for te burning in chest. I was also getting myofacial massages on my upper back and neck

I really hate taking these drugs. I feel in the past when I’ve taken some of the TCA’s/SSRI/SNRI they made my burning worse or manifested my pains if they alter the pathways at which the nerve is working on.
I really hope it’s not RSD. Neurologist say no but is there anyone out there like me ?


Things I am thinking about trying

1) upping my gabapentin from 1200mg to 3600mg(Stop if I get relief before 3600mg)
2) Qutenza patches on the area of skin affecting me.
3) Calmare
4) Cymbalta or TCA like desiprime combo with Gabapentin
5) milnacipran

Bent 98,
After reading your story, it doesn't sound like you have RSD. But I am far from a doctor. It sounds like you have major GI issues along with your vocal cord issues. Neurontin should only be increased with your doctor and taking to much will cause other problems. Also be careful mixing medications, not all belong together and you could end up in the ER overdosing. Good luck!

Oh my...I just read through all the posts in the link you posted and I am SO sorry for all that you have been through! Ugh...it is so frustrating when you are dealing with problems and just get bounced around from one doctor to the next. It seems like you have really been through a lot with very little success.

The problem with RSD is that it affects everyone differently. Not everyone with RSD has ALL of the symptoms...but there are 4 categories of symptoms that the doctor need to see or you need to experience to generally be diagnosed with RSD. It's not a case where if you've ruled everything out then it must be RSD. So I don't know if what you are experiencing is RSD...I certainly HOPE it is not...but here are a few things to consider.

You've definitely got the pain and sensitivity to touch. You describe it as a sunburn like pain...does your skin get red or hot...or does it just feel like a bad sunburn? Are you more puffy or swollen in the areas where the pain is? How about any mental symptoms like trouble concentrating, difficulty sleeping, etc?

Does ANYTHING help with the pain? RSD pain is very different and reacts a lot differently than other types of pain. You say ice makes it worse...which WOULD be consistent with RSD. Have you tried Lidoderm Patches? I know it hurts me when I first put them on...they are cold...but after some time they help relieve my burning pain a little. Heat generally helps and I've tried a variety of things to help with that from generic air activated heating wraps, to microwaveable heating pads, to plug in heating pads, and even a space heater just to keep the air around me warm without having to put any weight on the sensitive areas.

Does anything other than touch flare up the pain such as a cool breeze, cold temps, weather changes, etc? Does even a very light touch (including clothing) cause you intense pain?

Also...how about trying Lyrica? Neurontin didn't help me and I had a horrible reaction to Cymbalta...but Lyrica helped me (at least in the beginning) and I took that in conjunction with meloxicam (nsaid), tramadol, and doxepin. Everyone is different so sometimes it's just about finding the right medication for you. Lyrica was good for me but others HATE the stuff. But don't let the docs put you on a whole bunch at once because then you won't know which is really helping.

Oh...and another thing that may be worth a shot if you haven't tried it is a TENS unit. This can help with a lot of different types of pain, not just RSD, and it might be worth a try. This has been the number one thing for me in helping with my RSD pain and has allowed me the ability to do physical therapy which I need to get back to being a functioning member of society.

If it were me...I would probably try Lidoderm patches first and see if that gives you some relief. You can put it on the areas where you are experiencing the pain. Then maybe heat in some form. Then maybe the TENS unit. If the doc wants you to get physical therapy for your back/neck then they may have a tens machine there and you would be able to see if that gives you some relief.

I honestly don't know if you can have RSD if you only have the pain...but just because it isn't RSD doesn't mean that some of the RSD treatments and things that we use to help relieve our pain wouldn't be useful to you or worth trying.

I hope that you get some relief/help soon. Good luck and feel free to ask any questions!

I am not a doctor either but after reading your post I want to say I agree with Alt and Catra on this one.
Be careful about messing with meds. They may cause side affects you're not aware of. I imagine you've talked it over with your neurologist? If not you should before experimenting on your own.
As far as I know RSD has always given more than one symptom to everyone. There are other conditions that seem like RSD but in fact are not.
It sounds like your neurologist did enough testing to know. It's your body so communicate everything to him/her.
Best of luck and keep us informed...

You've definitely got the pain and sensitivity to touch. You describe it as a sunburn like pain...does your skin get red or hot...or does it just feel like a bad sunburn?

My skin look and feels perfectly normal. It doesn’t swell or change colors or temp.
How about any mental symptoms like trouble concentrating, difficulty sleeping, etc?
I don’t have any difficulty concentrating. I take 1-2mg of melatonin and I get to sleep if I have pain at night. I sleep through the night and always get 8-9 hours of sleep.
Does ANYTHING help with the pain?

Well thing was when I had burning pain in my chest I would use biofreeze and it would feel cool and block the pain. But now that that burning is in my back for some reason its like sunburn and sensitive. Putting Bio Freeze makes it feel like its burning more.
RSD pain is very different and reacts a lot differently than other types of pain. You say ice makes it worse...which WOULD be consistent with RSD. Have you tried Lidoderm Patches?

Well Ice or heat can possibly make it worse, I just thing the fact that I am pressing ice pack on back makes it hurt. The hot or cold weather wouldn’t irritate it.
I have tried the Lidoderm patches. ITs wierd. Sometimes it helps sometimes it does nothing and sometimes it feels like it irrates it.

I also tried voltaren cream. Again some days I feel it helped, some days it didn’t do anything, and sometimes I felt like it made me worse.

My pain is all over the place. Some days are good and others not so good.

Does anything other than touch flare up the pain such as a cool breeze, cold temps, weather changes, etc? Does even a very light touch (including clothing) cause you intense pain?

The thing is I am in pain all day. the gauge of pain can range from 1-8 out of 10.

It’s usually when it starts getting up around 4 that I really feel uncomfortable.

You can touch my back and it may not hurt that second. It may take a few seconds or a few minutes and then my burning feels worse. It really depends. I have limited touching that area as I am scared to make it worse since I really don’t have a way to get relief.


Also...how about trying Lyrica? Neurontin didn't help me and I had a horrible reaction to Cymbalta...but Lyrica helped me (at least in the beginning) and I took that in conjunction with meloxicam (nsaid), tramadol, and doxepin. Lyrica was good for me but others HATE the stuff. But don't let the docs put you on a whole bunch at once because then you won't know which is really helping.

I have educated myself on nerve and pain meds. I will not take narcotics. I know not to try more then on drug at a time. I have really been putting of trying more drugs but I am at the point I almost have no other options.
I have tried lyrica in past but a small dose and it made my heart race but at the time I was also taking amitriptyline. So I think the combo was causing lyrica to have that effect. Tramadol is something I wanted to try but that is one of those drugs those loose efficacy over time and can become additive. Not something you want to take for the long haul.


Oh...and another thing that may be worth a shot if you haven't tried it is a TENS unit. This can help with a lot of different types of pain, not just RSD, and it might be worth a try. This has been the number one thing for me in helping with my RSD pain and has allowed me the ability to do physical therapy which I need to get back to being a functioning member of society.

I was looking into Tens machine. ITs same concept as that Calmare machine. Explain to me how I can tolerate that? If my skin is hypersensitive, how would putting a TENS machine help? Wouldn’t it irritate the living crap out of my skin? IS there a method to it like calmare where the put the pads in a non-sensitive area next to the affected area?

I also was looking at doing the Qutenza to reset the substance P receptors on my skin but that sounds really painfull and may not be covered by insurance.. The Calmare is $2500 which isn’t covered by insurance. Other then that its drugs and more drugs.

I wish someone out there can had similar symptoms that could point me in the right direction.

This chronic suffering I have had over the last 15 months has made me so depressed. I was such a happy person, always joking around. I am grateful for my loving and supportive wife and family. I have a good job and home but none of that seems to matter as my quality of like is total crap. I am a low tolerance for pain. I have seen a therapist to help with coping techniques and meditation. It help a little but I having a hard time accepting my life as it is now. More so I am having a hard time accepting this pain. It doesn’t make it easier in the fact that no one can tell me what’s wrong with me. It’s obviously a sensory nerve issue but why and from what, I need to get relief for this pain. I cant live me life. Its torture for me and don’t know how I can function at work and home. Every day is such a struggle. I cant imagine what some of the poor people are going through with RSD and other debilitation disorders. I pray for all people suffering every day.

I feel so bad...there's nothing worse than being in pain and having nothing help. My pain at its best is at a level 7 these days out of 10...but after months and months of zero relief I will take any small help there is. I know it's hard when you are constantly in pain...but maybe try to write down exactly what you are doing, where you are at, etc when the pain starts to get elevated. You may be surprised by what you find (or it may just be jibberish...but anything's worth a shot right).

The TENS machine is sort of odd and I don't know exactly why it helps. But you put the electrodes around the area (surrounding it) then the pads themselves shouldn't hurt you. They bother me much less than the Lidoderm patches at any rate. The sensation is...odd...but after 15-30 minutes of the odd sensation it does drop the pain level down. For me at least...not everyone. It can sometimes take some tries to get the placement of the pads right and the right settings...but like everything else when you are in constant pain...it's worth a shot.

Have you tried doing these different things at different pain levels? Like if you put on the Lidoderm patches when the pain is at a level 1 on the pain scale would that maybe prevent it from escalating even if the pain doesn't go away completely? If you can't make the pain go away then at least keeping it at a low level would be a better situation that you have now.

I do hope that you find some answers soon. It's probably not RSD but no matter what it is I hate to hear that someone is suffering from chronic pain and can't get any relief. Good luck.

I pretty much have the burning pain coupled with some sensitivity but not much else. It did start after a surgery in my wrist, moved up my arm into my neck, down my leg and now I feel it in my chest and stomach. However, I only feel it on the right side of my chest...weird.

I've had numerous Neurologists, Anesthesiologists etc. diagnose as RSD even though I'm missing several symptoms. And, I'm going on 3 years now.

I hope you don't have this as it's not pleasant.

Feel free to ask any questions.

Tiff,
I got it only on my left side. Started in my wrist/hand. Spread up my arm, neck, face down my chest and now my leg. All on the left side. It is weird...

Wierd thing is this. I sleep on my back and as soon as I wake up in the morning there are days I have no pain what so ever.

I try to lay as still as possible but after a few minutes the burning pain comes back. Though not terrible it starts to come back. What the heck does that mean?

I just cant figure this whole thing out.

The other two people who commented about the burning on one side, what do you do for the pain?

Other thing I dont understand is people has sensitivity to touch. Sounds like pain isnt there until the area is touched. Then its in pain when you touch it and then after a while go away. Mine forthe most part is always there. So how can a skin sensitivity cause constant pain if its not being constantly touched?



What other condition's seems like RSD but are not?

I can only come up with Small Fiber Nuropathy and Central Pain Symdrome. Again these dont seems to fit my symtoms exatctly either.

I take nortriptyline, topamax, norco, tramadol & tizanadine for all the bulges in my neck that I've received in the past year from stressing about this disease ha.

I rarely wake up without pain but I think that is because all the meds have worn off. And, I can't take the 12 hour meds as they are too strong for me.

Isn't it weird how our body plays mind games with us?