I have neuro TOS and sometimes the RSD comes out.

I live out in the CA desert (by Palm Springs) and the heat is coming, the weather is going from mild now to summer.

Just tonight the RSD flared up on my arms.

What do you all suggest to do (drugs, topicals) for RSD when it first flares out? Do any of you have any control over your RSD?

thanks.

I remember you from the TOS forum. I know what it's like to have both going at the same time. I have always said that the TOS is as bad as the RSD until they can be calmed down.

I was on Methadone for years and still keep it around for the worst pain. I think it's the best med. I found for pain and I tried them all. Others have some preference of their own.

Lidocaine patches help some. You can put on 3 at a time. I also get triggerpoint injections when needed for the RSD, TOS, and Fibro.

Blocks are good too. I had 3 of them in the beginning and they again work for some but not all.

I would find a good Anesteologist that might do some blocks for you and may have some other ideals for the pain. I don't have a PM Dr. but some here do.

Others will come on here with more help for you. I can't handle the heat either. I actually do worse in the summer then I do the winter.

Ada

I'm seconding Ada on maybe if you could get a SGB right away it would nip this flare in the bud

A problem I have though is that unfortunately, it can take months to get an appointment at the pain clinic for a SGB, then had hassle and more time as WC diddles around with trying to deny it

Good luck TS

Hi Tshadow, Sorry you have BOTH. I'm in Scottsdale, close by you, so understand the heat. I'm in the process of have my Dr. work with a compounding pharmacist regarding a topical cream, ketamine, lidocaine, -don't have all the ingredients or percentages. Will let you know when I do.
I have a terrible time in heat. 2 or 3 cooler showers can cool the body down. A cool wash cloth on the forhead or neck can help. I swim in the shade and that helps. Also drinking cool water helps with the inside. Besides full body RSD, I have internal RSD complete pelvic region. It's pretty tough.
For Pain drugs I'm on vicodin and lorazepam helps with anxiety. I'm sleeping 10 hrs a night with low dose seroquel xr 150 mg. Was on my Drs. 200 person study-before seroquel I was awake all night-a nightmare. Hope this helps, your friend, loretta

Ok, here's what I did:

I upped my Ativan and gave myself my breakthrough amount of Dilaudid.

Then, I took one dose of baby Bendadryl. (I used to love it for this, BUT, it started a restless leg, leg pain thing and my injury is basically the right side.

Funny, how we stop eating "real food", as I now drink Glucerna with milk added, and Gatorade, as well as freshened water.

On the other site I warned about the pitfalls of not staying on schedule with your regular meds - a doctor and I discussed - and I mean just discussed the importance of making a topical that works for each individual, so that you can go off or go down on your meds, and that included mixing:

pain relief - such as dilaudid pills, just a few for a large container of cold cream

a very, very small bit of steriod,

an inti-inflammatory,

things good for the skin such as Vit D and Aloe, etc.

Well, I talked to my pain mgt. doctor about it and he put it in my reporr that I was mixing drugs for a topical and the work comp then refused all of my meds!!! (We have a date for trial on this.) So not only did I not do it, but they accused me of being an opiod addict and that it is called a "Las Vegas cocktail" when you mix up heroin and coke and get high...

I was VERY upset with my doc for not listening to me, but now, it created a need for the attorney and a hearing and just to get my bare minimum meds I've had to pay cash!!!

Outrageious, don't you think??? And this was MY doctor!!!

I think many of "our" doctors (not on the list), but ones we choose, are really insurance protectors and have no regard for our pain. I really do.

Thank you for your reply, and I hope that my reply may help others, also.

Hi, I am so very sorry. That is so ridiculous. We try our best to find some ease of pain and get accused of getting high. With this kind of pain, we don't get high, our pain is just lessened-not even gotten rid of. Enough to make you go in a closet and scream.
I had a meltdown this morning. Crying-felt like a icepick in my left temple-I have trigeminal nerve pain, My 15 years of RSD is full body and now internal. I also have Fibro- and now need to check out RA. getting knots on my knuckles like rheumatoid. Yesterday our RSD support group had a rheumatologist come and speak and I was too much pain to go. I'll talk to our group leader and get a summary. The internal RSD is bad-pelvic region. Dr. Oz had a specialist on his show. I'm thinking of going to New Jersey or Wash. DC there are two specialists. Can't find anyone here yet.
Could you talk to your Dr. and have him explain his report to put you in a better light, which should happen. I'm sorry you are going thru this, as if we need anything added to our stress. Take care, loretta

WOW!!!

I am SO SORRY this happened to you. WC SUCKS!!! BIG TIME!!! I hope things get resolved for you soon.

XOXO Sandy

Hi Tshadow,
This is a casic example of some insurances, in this case WC, taking a fact and twisting it, manipulating it, taking it out of context, to snag an opportunity to save some bucks on meds at the expense of someone's health and well being.....Grrrrrrrrr.
Why oh why did your pain management doc present it that way in his report! Have you been able to actually see the report and ask him to explain? I suppose if he offered a modified report, his future credibility would be on the line...
I'm sorry you have to endure this and I hope it's resolved soon..
hugs from Hope4thebest

Dear Loretta,I am so sorry you had a meltdown this morning..it is such a strain to try and maintain optimism and bear the pain and the changed lives that RSD brings.
You always offer kind words and support to everyone..dear friend, I hope the meltdown was a way to help you vent, as we all must do from time to time, to keep in balance...I hope you are feeling better tonight with all my heart..
Thinking of you,
Hope4thebest xox

Loretta and TShadow, I am so sorry to hear this. They tell us to manage our pain, then do not like it when we do. It seems like there is not much pain relief out there for us. I had to go to the er once on the doctor's orders ( he told me if I didn't show up there in an hour, he was sending an ambulance) and even though they knew I was coming in, treated me terrible and did nothing for my pain. I eventually walked out and that got their attention. I hope today is better for both of you, Lisa

I think the Goverment is protecting the insurance companies, Pharmaceutical companies, Drs., WC, and Hospitals like what is going on with this oil spill. BP has bought off the Government, won't name names but I think the same thing is going on with the above mentioned. The Goverment should have went after these places instead of the lowly people like us.

I got turned down on a med today for my stomach through a secondary insurance company. My Pharmacist said it was because it cost 250. He said if we stay back in the woodwork and don't make noise then their ok with us. I called the insurance company and they said I have to have a Prior Authorization to get it. There has to be a hearing. I bet there are no medical people involved in the hearing.

You might be right about these Drs. I sure haven't been able to figure them out in the last few years. They just seem different to me now.

I sure hope things start going better for you. No one should have to go through so much crap and be in so much pain.

By the way, when are we going to start our own Pain Tea Party and go to Washington together?

Ada