Help me - outbreak now
 

Hi Tshadow,
 

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

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 :hug:

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 :hug:

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

hi,
 

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

Bring down your body temp
 

When I'm going through a "crazies" the first thing I go running for is a cold wet towel. Might sound stupid, but while ice packs can cool down the area that hurts, I've found that you also need to dissipate the heat off hence the freezing drenched towel actually steams when I'm using them.

Living in the desert also makes a bit harder I think. When I lived out in souther CA and AZ, it was only by keeping the A/C down in the low 70's where I found much relief, but wow does it hurt the wallet. Living where there's perfect weather can have its drawbacks and with RSD heat is a chronic battle. Best of luck, Bob.

Hi Hope4thebest, Thank you for your kind words. I did have a meltdown from pain and feeling overwhelmed. We are in the process of moving. We bought a home about half the size we are in and one level. My husband had he remodeled completely. Our home we are in sold just as we were finishing the remodel on the home. But it isn't closing till July. So that is great, as I am just boxing a little at a time. The small things, my husband takes over and I put away. Some days we do nothing. We have movers coming that will move all the big stuff. I am so thankful we aren't rushed.
Things are better, I just get those once in a while, I went to two new Drs. on the internal RSD and had a terrible meltdown seeing the kind compassionate 2nd Dr. She is trying to work with compounding pharmacist on a cream to ease the burning.
Hope you as well are feeling well tonight. Always enjoy your posts. Thank you, your friend,loretta with big hugs:grouphug:

Bob,
What you just wrote I ditto that. Whever I have a shut down or a flare up I automatically drink ice cool water and deep freeze my system. The prickly pain goes away when I cool down the system. My internal thermometer loves the cool as it was accustom to it when injury happened.

Realizing you and I can tolerate cold but many other RSDers cannot. It just depends on their personal systems of what they can tolerate.

Lisa, I'm sorry your aren't getting proper pain relief. I went to hospital in an ambulance (after passing out for hour and half) and of course seen right away-admitted for several days. In fact the paramedic told my husband I was dead. NOT YET-i say. A couple of years later. my husband drove me to hospital and waited several hours-I laid down in car and he waited inside for my name to be called. After several hours and them saying it would be a while longer, we drove away. Absolutely ridiculous. It seems the only way to get immediate help is to arrive in ambulance.
Sorry this happend to you. How did you get RDS? Has it spread?
I'm 62 and had it 15 years. spread full body and internal.Mine followed breast biopsy. I'm thankfully mobile, except one hand is 50% range of motion.
I'm grateful for you you friends here-the support and understand keeps me sane. Thank you everyone. your friend, loretta with big hugs:grouphug:

Dear Loretta,

Sorry to read that you have been having a tough time lately. Bummer. I thought I saw that you were on here less than usual - I missed you, as I'm sure many others did also. You are one of our "rocks." Please know that I care and will be keeping you in my prayers.

XOXOXO Sandy

me too,

Mike