You might want to ask her to see an Anesteolgist to do the block. A lot of them have offices now where they do the blocks there.

I too have the PF and wear New Balance shoes that my Dr. recommended. I know not to walk too much and the summer is worse on it. The heat makes it act up more along with being on the feet.

The weight thing gets to me. My Dr. has used that on me because I gained 15 lbs on Lyrica, I finally told him I knew better then that. I have since lost 10 lbs but my Cholestral hasn't went down. I had him to go back over my chart and showed him that it was just as high without the extra weight. I think the weight thing is a sellout.

Good luck on finding the answers.

Ada

Loretta, Thank you so much for such an open and informative post. Glad to hear that you are moving to a more friendly RSD house, I thankfully already lived in a one story house and thank God that I do everyday. Best of luck on the SSDI, but be aware that it may take some time, I was initially denied, and then waited two years for a hearing and had to have a lawyer assist with the process. My daughter has an advanced degree in social work and was well versed in how to complete the paper work and that was a great help. She had also attended many hearings and was able to tell me what to expect, so if you know a social worker, that may be a good source to tap, especially one who works with severe mental illnesses. Glad to hear from you again, I have missed yourr posts and was wondering about you, Lisa

Hi Lisa, Thank you for being so complimentary. Glad you have a RSD friendly house. We had the new one remodeled and the day we finished it, we sold this house. Good Timing. I do have a friend on SSDI that is helping me fill out the paperwork. I have talked to an attorney, and he said for me to apply first and he would help me with appeals if there are any. My two friends got it first timei-about 2 years ago. My daughter is a court reporter, but she really doesn't work in this line of the law.
I haven't been on the forum for a while-we had company for 8 days-2 couples from Oregon-Washington. Then remodeling the new house. Packing and I've been doing so much research on internal RSD in the Pelvic Region. Just saw two new Drs. But no experience. May go to New Jersey or Washington DC. Dr. OZ had the New Jersey on his show in January about the internal RSD. If anyone needs information about it, I have a lot of information.
We also sold our business as I'm not able to work in it anymore. But I also lost my health insurance, so hope to get this...............
Thank you for your help and very glad you found this wonderful group of friends. Do you have a local support group? We do here in Phoenix. Our once a month meetings are very good. This Saturday is about RA, which I am pretty sure I'm getting in my knuckles. You can go do RSDSA and put in your zip code for support group and it will give you closest group with contact name and phone number. Take care, one of your many new friends, loretta with big hugs

Welcome to NeuroTalk Maralyn,

I'm a former (thanks to RSD and TOS) nurse. Your red, white, and blue splotchy legs sound like my red, white, and blue splotchy arms. I am also overweight.......BUT (sarcasm drumroll please) if you could ask your primary why my 'colors' are faded in the morning when I first get up and my pain is managable. My weight is still the same, so why would the colors change ? Also....everyone's O2 sats drop when we are sleeping, which would exacerbate the blotchiness if it was caused by poor circulation. My 'colors' flare when my pain flares. How exactly does she think poor circulation could account for that ? Okay, sarcasm session ended

In my investigation of the cause for the blotchiness, which is not an exact match for the shiny red skin that is most 'typical' for RSD, I also read up on things like Raynaud's and Lupus. My blotchies look like some of the pics I have seen of Raynaud's, which IS a poor circulation issue. Colors flare in Raynaud's with cold temperatures....it's a vasoconstriction thing. My colors are usually faded with cool temps and intesify when I am in warm surroundings.....probably because warm temps make my RSD sweating so much worse.

Oh yeah, quick question......Do you have excessive sweating from the affected areas ? More or less hair ? A change in temp from one leg to the other ?

Raynaud's type blotchiness can be seen in Lupus patients too AND high sed rates are often found in Lupus.....something for you to look into.

I'll be blunt, I'm not a fan of your doctor. If she hasn't worked with many (or any) RSD patients, fine, but don't dismiss the dx because you don't understand RSD, KWIM ?

I had a bad experience with a physiatrist who thought more aggressive PT was the answer to everything and made my pain so much worse. So, I'd vote for a rheumie or neuro, if you have the choice

Hello family..Keep smilin here.. What a great family we have..these posts are all very informative..I can't top the info shared but I do want to welcome Maralyn.. I am sorry for your RSD..I have RSD also..now 3 yrs. I walk with the aid of a decorative cane, actually I have 9 of them.. has to match my outfit!! Mine began after rt. knee surgery and now I am considered to be whole body/internal.. See RSD is real..it is pain that is undescribeable..It is not fair that we are not understood and it is unfair that we expect others (not Dr's.) to understand our pain...It is a real education..I too walked a bunch for my work, I was a medical lab. Technologist..sadly I had to leave my work of 25 glorous yrs. in 12/09..I could not drag myself thru another day... Life is funny..we must not crumble..we are allowed to cry, kck and scream...but once we must gather all of the pieces we must remain open for what cards we are dealt..what is really important is how we play our cards..Keep faith, hope and smile in your heart..and always know..you have us!!!

Hugz, Kathy

Thanks for all the good info and support you guys!! I really appreciate it.

LOL...Finz...I really don't care for my new Dr either. I did when I met her...she was nice and she seemed to listen, but she STILL has not called me or had her Nurse get back to me regarding the possibility of the consult and I have sent one follow up email yesterday to her with no response.

Sometimes I do get blue fingers and toes when I am cold....sometimes I don't. I know that is most likely Raynaud's related. At other times when I get painful, I will get red, blue, and yellowish blotches on my upper legs, but my feet and calves/shins will be bright red, warm, and throbbing with the severe burning in my feet and spasms in my ankles.

I do have hair loss on most of my lower legs. It seems the only place the hair really grows is just below my knee on my left leg, and I do have temp changes between limbs...a lot. Last night, my right leg was very warm to the touch but my left leg was a slightly cooler than normal temp. I also get night sweats as well, which I hear some people talking about.

I wonder just how much my feet sweat? I am always having to change my socks because the bottoms of them get so smelly and then they get hard when they dry out. I just thought I was weird, but maybe they are sweating when I am wearing my shoes?

I don't know...but I'm growing impatient. Maybe, since this Doc is new to me anyway, I should switch to another Doc?

I think I'll call her office tomorrow.

I'll keep you all posted!!

I'd print that out to remind yourself of exactly what to say.......followed by, "That sounds just like the desriptions of RSD that I am reading about.....if all of this was 'just' from poor circulation, wouldn't the temperature/edema/ and color changes indicate that I need immediate medical treatment for a clot ?"

Welcome Maralyn,

When my RSD spread to my right leg I had an ultrasound done to rule out a blood clot. Twice. A few months apart.

The best docs for RSD are often board certified Pain Mgmt docs or Anesthesiologists affiliated with large university teaching hospitals or in very large cities.

The RSDSA.org website has a great database of information that I found really helpful when first diagnosed.

The best of luck to you. XOXOX Sandy

Hi,

I so know what you are going through. I have had maijor surgeries on my hands where they had to saw off some of the bone around my thumbs. I have tried everything. Some days I cant use my hands at all. I get so frustrated I cant stand it. My Doctor right now is wonderful, But I am moving from here (MD) to California City in July. I have no clue what I am going to do. I have started looking for Doctors that medical manage. but I have not found one yet. I am dreading this. If anyone has a good Doctor (not a clinic) Please let me know. In my Doctors office now it is just him his wife and their two nurses. I love it. If I was rich I would fly back here once a month, But get real I cant do that, anyway I am here to chat also if you would like
Take Care