Any suggestions!
 

Hi Everyone,

I have told my story many times, so I won't bore everyone.

I thought I was in a pretty good remission of some sort over the last couple of years, with some set backs i.e. problems with my lower back but have had great results from 2 lumbar epidurals plus losing 30lbs so far I'm sure is helping also, have been on lose does of medications and doing ok, working PT consistanently, got back into the gym, yet I have to be so careful with what I do. And almost forgot what the headaches felt like. But over the last 2 or 3 months things are changing my lower back is still good, but my pain level in my arms is really increasing and spreading or I think spreading to the left side. I have had some problems with my left shoulder, my right arm is the RSD arm, off and on over the past 2 - 3 years but lately the pain is very stronge and now I'm starting to feel burning in the left shoulder. Also having headaches again and my sleeping pattern is terrible. I really don't know what to think and what can be done at this point? But any suggestions would be appreciated. I quess what I'm looking for is someone who has been in remission and then things come back after a long period.

I see my doctor on Wednesday. He has already suggested doing a series of 3 SGB's, now they do them with ultra sound guidance. When I had mine many, many years ago it was a injection without any guidance, maybe once or twice he used fluroscopy. Don't remember. Maybe a cortisone shoot in the left shoulder just to get it under control.

Thanks everyone!
Gabbycakes

Hey Gabby,
 

I would definately try the blocks since it has started up just in the past few months. I would try lidocaine injections also in the shoulder area. I have only had one steroid shot for mine. Since you might have to have more then 3 injections to get it calmed down, it would be better.
I consider myself in remission. It's just the change in the weather that brings mine out and ours has been bouncing everywhere. It has been in the 70s the past week but it's going into the 30's Wed and I am not looking forward to that.
I still deal with the sweating, cold hands, cold feet, cold legs but the pain has been under control pretty good.
Go simple before it gets so out of control. I don't see the big success with some of the major things being done for people. They still have to take meds with whatever they have done and everything seems temporary, no matter what the treatment.
Good luck and I hope whatever you try works for you.

Ada

Hi Gabby,

In addition to a number of SGBs, I also had 8 lidocaine infusions. I believe that they helped reduce the terrible burn I was experiencing quite a bit. The infusions consisted of 300 mg of lidocaine and took a few hours each.

They were much more easily approved by my insurance company than ketamine infusions.

Good luck to you, I truly hope you feel better soon. xoxox Sandy

Hi Sandy,

I have been offered a lidocaine Infusion in the past but never did it. Right now I just have to find out what's going on with this left shoulder/arm. My right is the RSD side and I'm left handed so even writing is giving be alot of pain. I also had a carpel tunnel done on the left side in the middle of the whoe right arm nightmare. The carpel tunnel can come back and yes give you pain all the way up your arm to the shoulder. So I'll see what he says tomorrow.

I'll keep you posted.

Gabbycakes

Gabby,

I just had another thought as the headaches are one of my biggest problems also as most of my pain started in my neck and base of skull 10 yrs ago.

Is it even slightly possible that this weather could be causing some sinus problems which are exacerbating the pain? I only ask because I have noticed some pattern to in in myself and know you were suffering the same lousy weather in this area last week.

I don't know if they help you at all, but I do find lidoderm patches to be useful in my shoulder area and upper arm. Dr. Richman also gave me a prescription for fioricet which did seem to help some in the hospital with my headaches.

Knowing now what lumbar blocks and brachial plexus injections can do for me since being in HSS, I would definitely go for some nerve blocks if you think it might help bring your pain down at all. I know it definitely helped me while I was in there and has continued to since.

Will keep trying to think. I pray you're feeling better tonight.

Dawn

Hi Gabbycakes,
It seems like your increase in PT and general movement has increased and possibly spread your RSD (I pray not) and look forward to seeing what your doctor suggests. It seems he is a good and smart doctor. My rsd went full body within 4 months so I have no idea what it would be like for it to change after time. Good luck with your doctor appt. and let us know how you make out.
take care,
kathy d

Thanks everyone,

I did get a cortizone shot yesterday which helped tremenously. Went over the Cervical MRI I had a month age and there is a slight blug. Will review again in 30 days and if it goes back to feeling flared again, he'll do a cervical epidural, wow can hardly wait. I did have great results from the 2 lumbar epidural I have had a mean almost pain free and I was at a point after sitting for a long time I could barely walk, once I got going I was ok but that couple of minutes was hell.

Thanks for all the concern.

Gabbycakes

Hi Gabbycakes,
I am so happy you are doing better and the shot worked well. That burning pain can drive you bonkers for sure. It is soooo relentless. I am getting somewhat used to the heavy burning pain in my chest/abdomen now as I was told it is in my skeletal system. Yeah for me huh haha. Glad to hear you are doing better. Keep up the great work.
take care,
kathy d

Hi kath,

I am doing better even more so since it's been a few days. He did say by Friday you should feel the full effects. I'm still favoring the right arm(RSD arm) which is really not what I should be doing. But today I'm going to try and use and left normally. I just hope that pain doesn't come back.

Thanks for all the support.

gabbycakes

Glad you are doing better. I can relate to the relying on other body parts to protect the worst of the rsd area. I know I have created problems in others areas due to that. On my better days though I try to slowly be more even so to speak with how I move my body. I hope you continue to get relief

Hi Gabby! Have you tried vitamin c infusions? I had an ankle injury 8 months ago and my rsd started to spead to my ankle. It was bad. Then I had a set of vitamin c infusions and the ankle got a lot better. Alternative medicine centers have those kinds of infusions sometimes. There was a study that actually showed that giving large doses of vit c to patients after injuries, seriously lowered the likeability to develop rsd. So don't dismiss them as there are scientific studies backing them.Vit c works by activating circulation. I would give them a try.
Good luck and best wishes! Big hug!

janejane,

Someone else just said the same thing on this fourm, I think it was kathy d. I have to check all that out. When you say Alternative Medicine Centers what do you mean? I have never heard of that. I live in NJ about a 1 or 2 or 3, demending on traffic, for NYC. If you have any recommendations I would appreciate it. I would love to go all natural if I could. So I would definitly be interested. Does insurance cover it?

Thanks for the info.

gabbycakes

Hi! So sorry for the delay in replying. I didn't forget about you, but I had an awful bunch of problems and have been so overwhelmed.

Did you find where to get the vitaminc c infusions? I don't know if there are places in NY where one could get that done. I only know tye ones in the Boston area. Insirance doesn't cover them but for me they work so great! I wish you could try them. I am going to call the doctor who prescribes them here and will ask him if he knows where to get them in NJ or NY.

How are you lately? Hope that much better!

Hi janejane,

Sorry to here you had some problems going. I hope they have resolved themselves for the positive.

The headaches I spoke about months ago was corrected by the proper glasses. So now I don't get headaches any more outside of the usually.

I've had a rough summer. Humidity is the worst for me. So honestly I don't go out unless I'm in my office,which is freezing, in my house or by water between the hours of 11-5. I just can't handle the heat. And I have had some RSD return like running water down by arm, the little bug feelings I used to get and even on my opposite side which has not happened in 3 years. So I am a little concerned just waiting for the heat to end and hopefully the feelings will stop. I have had some increase pain but not serious. Not going to panic yet.

Thanks for getting back to me. Your very kind.

Gabbycakes

Hi!

I am so glad that your headaches are so much better. For me cold temperatures are the worst, not so much the heat so I start to get worried in the fall because it starts to get colder and my foot doesn't like it.

I spoke to the Dr. with whom I have the vitamin c infusions. He said that he doesn't know of anybody in NJ who does them, but that he knows there are doctors in NY who do. He said that the best way to find them is going to the American College for Advancement in Medicine's website. He ssaid that they have a list of all M.D. doctors who do infusions there. I tried to find the list but couldn't find it because I browse the web using my cell phone and I couldn't see the whole website with cell.

If you are still interested do check the website or give them a call. If you ever have a flare up, I highly recommend the VitC and magnessium IV infusions. They have helped me so much.


Best to you and good luck! Please send me a PM if you everr need help or info regarding the vit c iv's.