Hello, I was diagnosed with fibromyalgia by my GP awhile back and my neuro now supports that diagnosis when at first she didn't, but I just don't believe that I have it. I don't even have the tender points. I have all symptoms of CRPS/RSD but my doctors don't want to change my diagnosis or even consider CRPS/RSD. My sister-in-law has RSD and anytime we talk about our symptoms they are EXACTLY the same. I see my GP next week and I'm taking a print out of valid CRPS/RSD info to show her and describe how each symptom listed I have experienced and how often, etc.
I want to ask again for a referral to a rheumatologist. Last time she wouldn't do it because she was confident in her diagnosis. I have been through every test under the sun the past two years and nothing has shown up. I do want to request better Lymes testing though just to be sure about that because I only did the basic one.
Is a rheumatologist the one to see about CRPS/RSD? Has anyone gone through a situation similar to mine? Any advice? Thanks!!!
Hi and welcome, I am also new to the forum, but not new to CRPS. As many will also say, this is very difficult to diagnose as many Drs. don't have experience or knowledge. I wasn't diagosed for 5 years, in fact misdiagnosed by Reum. as well as others. The Rheum. diagnosed me with RA, even though the tests were negative, so I decided to go to a Sports Injury Orthopedic Group across the country that I had been to before. The Ortho said Rsd in 1-2 minutes, but sent me to hospital for nuclear bone scan. Started PT the next day.
Came back to Arizona and saw Neurologist who did more tests and comfirmed.
Saw Ortho Hand Doc who confirmed and continued my PT by his knowledgeable RSD staff. Because of delay in treatment, my left hand if frozen like a claw, even after much therapy. But it was frozen like a board, and I'm grateful I can partially use it now.
I have had this since 96 following surgery. Fortunately I had PT for frozen shoulder and when it moved to other shoulder -more pt. When it went to hand following an injury, is when the Rheum. misdiagnosed me.
Where is your RSD? I now have full body, all limbs - I also have fibromyalgia.
I personally feel, a neurologist is a good place to start. Or an Anethesiologist with a Pain Group. But it is important whether you go to those types of drs. or a Rheum. or an orthopedic doc. to ask if they have experience with CRPS. I personally feel an anethesiologist or pain group,, pay push for certain procedures that many have wished they had not gotten.
Because of change of insurance,, my 2nd neurologist also diagnosed me with full body or generalized RSD. After he died, my 3rd neuro diagnosed me and treated me for 7 years.
I personally feel its important to get as much information as possible about this disorder before doing anything.
I hope this helps. Most drs have a website with their experience and background.
What are your symptoms? Trust yourself and listen to yourself and get as much knowledge as possible. CRPS often spreads and it's important to be cautious before any procedure- dental or even needle blood draws. I take the butterfly needle which is smaller and less invasive. I ask for the senior person to do the draw.My dentist gives me antibiotics before even cleanings and I also use laughing gas before any work.
Let us hear from you and how you are doing. darlene
Last edited by Administrator; 01-31-2013 at 08:30 PM.
The Following User Says Thank You to darlene3431 For This Useful Post: evangeline74 (02-04-2013)
I would just about bet that if you bring her the information on RSD, she will still reject it. Nobody, especially doctors, like to be shown that they are wrong. I have heard people going to rheumotologists but this is a neurological problem. Myself, I see a pain management doctor. Unless your insurance company states you have to see just that one doctor, I would suggest finding a new one. Request your medical records from that doctor, ask for your entire record, then see somebody else. If your doctor charges a crazy amount of money to give you your records, then find a doctor first and have that doctors office request your records for you. They cant charge you that way because it's considered continuity of care. I work for a doctor's office so I know this to be true. Good luck!!!
The Following User Says Thank You to jewlz67 For This Useful Post: evangeline74 (02-04-2013)
I'm sorry to hear that you have all of the symptoms of RSD. OUCH!!! Can you go to the same dr your sister in law went to? Just a thought. What about a recommendation from that dr for one in your area if you don't live near each other. What symptoms are the most concerning for you? Mine is the burning feet. Good luck with your search.
The Following User Says Thank You to frenchfri1003 For This Useful Post: evangeline74 (02-04-2013)
Thanks for the responses, I appreciate it so much! My neurologist will not even consider CRPS so I'd have to start the whole process over again with a new neuro and I'm so tired of having my blood taken. I've had no less than 60-70 blood tests for ruling out purposes in the past 10 months.
darlene3431, my symptoms are every single symptom of CRPS except hair and nail growth but I do not have skin ulcers or extreme rashes as my neuro said I should have if I truly had CRPS. My skin does change colors and I do get rashes but they go away. I'm not sure which limb it started in but I think it was my left leg and that was two years ago when it started. Now all limbs are affected. The most notable symptom of late is the extreme temp changes in my skin from one part of my body to the next. It doesn't bother me but one arm will be ice cold and the other feverish hot, odd sensation. But according to my docs, this can happen with fibro but I just don't fully believe that.
jewlz67, thanks for the advice! I'd hate to have to start all over with new doctors but I may have to do that someday.
frenchfri1003, the burning knees and elbows, I literally woke up and thought the bed was on fire one night, very scary. VERY painful. My sis-in-law lives in a different state so can't go to her rheumatologist.
What the neurologist doesnt understand is, the skin ulcers dont start till later as the disease progresses. The skin gets thin and shiny too. Again, if he is that ignorant concerning this disease, then really, you are wasting your time seeing him. Plus, I would really be afraid to have him treat me if he wasnt knowledgeable about it! I would just count this doctor as a loss, get your medical records so that you dont have to redo the tests, and seek another doctor! Have you considered seeing a pain management doctor? Which ever type of doctor you decide on, make sure they know what RSD is and if they do treatments for it. Find out how many years of experience they have in treating it as well.
I agree my neuro is not very knowledgeable about CRPS. She did say however that the criteria for diagnosis here would be in the later stages of it. She said she doesn't like early diagnosis in case it is incorrect. But that is pointless because she would treat me for it as if I had it and I've already tried numerous meds but I'm very sensitive to meds and I don't like to take them; they make me feel worse and increases my brain fog. I'm supposed to start physical therapy soon, but I already do keep up an exercise regiment, vitamins, eat super healthy, and the only thing that helps ease my pain somewhat is applied heat. I stopped eating gluten and that has helped with brain fog tremendously!
I can't find anyone in my area who has experience in CRPS. Very frustrating. My GP would like for me to see a pain management doc if PT doesn't help. However, doesn't a pain management doc just give you pain pills basically? They make me very ill. I can't take pain pills of any kind.
What do you do to help manage your CRPS?
Quote:
Originally Posted by jewlz67
What the neurologist doesnt understand is, the skin ulcers dont start till later as the disease progresses. The skin gets thin and shiny too. Again, if he is that ignorant concerning this disease, then really, you are wasting your time seeing him. Plus, I would really be afraid to have him treat me if he wasnt knowledgeable about it! I would just count this doctor as a loss, get your medical records so that you dont have to redo the tests, and seek another doctor! Have you considered seeing a pain management doctor? Which ever type of doctor you decide on, make sure they know what RSD is and if they do treatments for it. Find out how many years of experience they have in treating it as well.
I would not say that PM docs just push pills. They are pain specialists, trained to treat pain with a variety of resources. From what I've read, the best PMs are also neurologists. They really are the experts on RSD or should be.
Our dd's PM doc did talk about blocks and stimulators. And she did prescribe meds our dd had a bad time with. But her strongest recommendation was for PT. Told me to get dd into PT as soon as possible. Also encouraged dd to swim every day, said that was the best thing dd could do.
I have problems with the way PM clinics are handled (poor communication only through the PAs, never the doc) but a good PM doc is really necessary.
