Is it my neck & back, my RSD or something else

[Niki81872]

I had a slip & fall awhile back that messed up the discs in my neck & back. I was sent to a pain management dr. to help get this under control. During a radio frequency procedure my C5 & C6 nerve's & muscles where hit and caused a great deal of damage. I insistently loss use of my right arm for 5 months and also devolped RSD. To help control the massive pain I was in I first had a cervical spinal cord stimulator put in but as my musclar pain grew into my legs they decided to put in a lumbar spinal cord stimulator. I have hernianted dics, bulging discs, bone spurs, degeneritive dicss, my spine around the discs is narrowing(and other stuff) and that in my neck & back. I have also devolped arthitis in the lower spine. They have me on oxycotin, oxycodne hcl and every muscle relaxer, cymbalta, nuerotin. I get the regular numness, tingling & pins & needles in my arms in legs along with the most intenstive musclar pain. But my question is the last 5 months I've been getting this pain thats right to the bones in my fingers & toes and in the beginning it was here and there but now its constantly. Could 1 of my previousm injuries be the cause or something new. My dr.'s say it just part of spinal cord injury along with the RSD and that will happen with some1 who has a chronic pain. I just dont know what to think. Any input would be greatly appreciated.

[Niki81872]

Hello, thank you for the nice welcome. Has your dr. offer anthing else after the stellate gangallion blocks? I had those as well but the lonest one last 2 weeks and the shortest one was only 15 mins aftyer I had the block. After that they decide to try the cervical spinal cord stimulator. That has helped alot but like you said nothing helps 100%. But by having that done it spread all the way down to my legs where it started just in my upper righr arm/shoulder/neck area.Which then lead to a lumbar spinal cord dtimulator.

I have done all the hevey drugs. The oxycotion was my long terrm & oxycodone hcl as my short term meds. And like you said it just takes the edge of the pain. I'd like to find something for the musclar pain but I've tried every muscle relaxer they could think of and nothing. I'm on cymbalta & nuerotin. I did try lyrica & topmax but didnt care for them. But my biggestproblem with the oxycotin is all I want to do is sleep. After working 5 days my weekends are wasted cuz I'm so exhausted from just wotking, the standing and the being at the computer. I'm so tired of not doing anything cuz the pilss have me so dog darn tired.

I haveb't try the fentanyl patches but do they stay on well? I've done other pain patches but the problem I have is them staying on. But I guess anything worth a try!!!

Do you have problem with your body temp being higher? Becuase of that its so hard for me to wash a single dish or doing anything, I break out in a massive sweat. When they have checked where the RSD is I'm usually about 7-10 degrees higher on body temp. It's just so fustrating this whole RSD. And when you tell people about they think its no big deal but by having the dr. hit my nerves & muscles he changed my world completely. I went to him for a bad neck & back and left with something for life. He didnt even aknowledge what he he did. it took almost 4 months before I found a dr. that figured out what I had but by then I was already in stage 3. And he destroyed my shoulder but becuase of the RSD, I will have to live with it since no dr. will touch it and I've exhausted all the shots I can get in it.

I appreciate all your advice. I also wish you the best of luck!!!

[mellie4]

Hello, and another welcome to this forum.  I have RSD as well.  It looks like mine developed after multiple surgeries on my hand.  I had a joint replacement that failed and had multiple surgeries and then developed the RSD.  Mine is primarily contained in my hand and has gone as far as my elbow or a little beyond.  I've taken a lot of different medications.

I just switched over to the Fentanyl patch and I really like it.  I use oxycodone for BT pain.  Of course, it doesn't kill the RSD pain, just helps it a little.  It does work on my other pain though.  I'm not sure something not as strong as oxycodone is going to work with RSD.   Neurontin and Lyrica are often used to treat it.  I couldn't take them because of the side effects I experienced with them.  I never was tired on the oxycodone or oxycontin, but when I used morphine for the breakthrough pain initially with the Fentanyl, I was extremely fatigued.  I couldn't stand it.  So I switched back to the oxycodone as the breakthrough med.

Maybe you should look into the Fentanyl patch.  A lot of people here have had good results with it.  It doesn't make me tired or dopey at all, though I do have to change it every 48 hours rather than every 72, which, from reading things here, isn't that uncommon.

Not sure if it would work for you or if you've had them, but I've had about five or six stellate ganglion blocks.  Some have worked well, some not at all, and unfortunately it hasn't lasted long enough for me.  

Whatever it is you decide to do, it sounds like you really need a great medical team with all the different issues with pain that you have.  Best of luck.

[Niki81872]

Thank you. Your right, I believe I'm going to get back on some but ask the dr. for something thats not as strong. That oxycotin is just a killer. So addicting. Any suggestions on pain meds that are not as stong but help. Maybe there something out there I havent heard of.

Niki

[Sarajmt]

I surely hope you find some relief.  The truth be known, none of us are thrilled to be on pain medications.  But the fact of the matter is if you're not functioning, you have to make some kind of move.  And personally, as much as I hate taking them with all the side effects, I am thankful that science has brought us these.

Whatever it is you decide, I hope you're able to find relief.
Sara

[Niki81872]

Wwel;l after 4 years of Oxycotin & Oxycodne HCL and being on every muscle relaxer thats been known(and know of them helped) along with cymbalta, nuerotin & topmax. I just got fed up. Especially with the oxycotin, all it did was make me sleepy and lazy. I'm just learning to cope with pain on my own. Hopefully I can last doing that or I'll get back on it.  Thanks again

[namnam46]

I just wish there was something that we could do to help you!!

I hope that you will consider using SOME sort of Medication to help you with your pain. You need to get some relief form your agonizing pain that  you have continuously!!

Like I said before, WE ARE HERE FOR YOU!!!

Please stay in touch....Sherry

[Niki81872]

RSD is known as Reflex Sympthetic Dystrophy. There's no cure for it. You can get it from a broken bone, sprain, iv or something very tramautic. And my luck I got it through Radio Frequency Injection. It cause chronic pain, it effects your nerves & muscles. In some cases people will get intense swelling and some lose uses of thier limbs. Now if the dr. that caused this had gave a darn when he did instead of ignoring me when I was telling him my upper arm was swollen and had no use of it they could have gotten it under control why it was still in stage 1 but by the time I found a dr. that figured it out, I was in stage 3. It aslo causes your body temp to be sometimes up to 10 degress higher which is no fun. You barely do anything your in a sweat. And to add this with all my neck & back problems justmakes it even worse. I did take myself off all my meds just a few months ago and went through the worst withdrawl. I'm just so tired of living my life on pain meds but now being off I'm feeling the pain 10's more. So will see how long thats last. Thanks every1.

[RunningMom]

I don't know anything about RSD either.  Oh wow, you are stuck.  I really don't know then.  Hopefully your doctor will be willing to work with you on possibly a med change.  I know a lot of people have great success with the Fentanyl pain patch.  I agree with Sherry, please feel free to rant all you want.  We are here for your support!

[Niki81872]

Thank you so much! I appreciate all the support... And I might just taking everyone up on a RANT & SCREAM.....

Sometimes you feel the dr.'s just say something real quick without really giving you a real look over.

[namnam46]

Hi Niki,

I wanat to Welcome you to the Pain management Forum and tell you that we are glad that you have found this Forum. Plese understand that there are NO Doctors on this Forum ONLY CP (Chronic Pain) Patients that share our experiences and expertise from our own pain conditions.

I'm really sorry for what you are experiencing. How devastating that you developed the RSD!!

As far as what you are experiencing with you fingers and toes, I'm NO expert at ALL when it comes to RSD. But from what you say about the way that it spreads throughout  your body I would think that what the Dr's have said would make a LOT of sense.

I'm so very sorry that you are having to endure this at such a young age!! Please know that we are all here for you and will look forward to your updates.

Also, ANY time that you want to come on ane RANT or Rave or just SCREAM you are ALWAYS welcome to do that. We will ALWAYS be here to listen and to SUPPORT you ANY time of the day or night!!

My thoughts and Prayers are with you......Sherry

[Niki81872]

No dr. will do surgery because of the RSD. With RSD having surgery could be more dangerous for me it causes the RSD to spread. Aftet the dr. hit my nerves and muscles, he damaged my shoulder so badly that I needed surgery but every dr. I saw said they wouldn't do it. And when I took a chjance with the cervical spinal cord stimulator they believe thats why my legs are messed up caused the RSD spread.

Thanks for the imformation. I'll try that.

[RunningMom]

Wow, why have they not suggested surgery?  Loosing your muscle mass is a very dangerous sign and the disc needs to come off of the spinal cord right away.  My first pain doctor tried to push the SCS on me and that was before I had my surgery.  I had lost muscle mass too due to having moderate spinal cord compression.  There is a huge risk for you end up being paralyzed due to the herniations and your spinal cord compressed.  I had to push surgery myself.

The SCS is suppose to be a LAST resort after the surgeries have been preformed!  The leads may produce scar tissue, which may make it more difficult to operate in the spine.  If I were you, I'd be heading to the nearest neurosurgeon and getting a opinion with them.  The longer you wait, the more difficult it is treating the pain afterwards.  Once the spinal cord is damaged, sometimes it can not repair itself.  

I would think your situation is an emergency due to the potential risks involved.  I would drop that pain doctor in an instant, he is only going to make your life miserable in the long run if you don't get this fixed.  You could end up in a wheel chair if your discs get worse and press farther on your spinal cord.  I know this first hand, I have the same issue and had to wait 6 months before they operated.  I may have waited too long and have permanent damage, but I'm not in a wheel chair and I can use my legs.

Good luck to you and I hope you see neurosurgeon ASAP!