... some doctors have no clue what we go through. I recently lost my doctor of 6yrs. I am lost on what to do, these doctors are making me feel like I'm crazy. I guess the real question is, does anyone know of a doctor that will help me?
26 Jan 2010
One less thing I do not have either. I am very sorry to hear your story. This is mine. I can relate however with my disabilities. I live in Texas. And, after 12 years of seeing one doctor, I made a huge mistake and went to another doctor for almost the same thing. He called it doctor shopping and dropped me like right now. I am on methadone so as you can see I was in a bad place. I did not go to anyone seeking methadone and I only really went to this other doctor because he is in my little surrounding town and I was really hurting. I had fallen on my tailbone in terrible pain. I had seen my regular doctor for that specific reason twice and he just would blow me off and I must confess I did want to get some soma for other reasons I would rather not get into, but it did cost me my doctor. I was ready for detox and all the other crap that goes with it. I did find a clinic that was ready and able to work with me but low and behold, my brother-in-law told me about his doctor.
And honestly, I went to just have a GP not expecting anything else. I was openly honest with him and told him the whole truth and nothing but the truth and he told me he would not only take me as a GP but would work with me on my pain meds. To my surprise, I almost fell out of my chair. I am still waiting for the sky to fall. But he doesn't just write scripts, he does bloodwork, urine testing, sent me to a pain management doctor to keep my MRI and CT Scans current. And, is willing to work with me to lower my dosage of methadone or if I cannot he will do whatever is needed to keep me comfortable. So, after all this bs, what I am trying to say is there are angels out there. You just have to be diligent, open, honest and find the right doctor. I will say a prayer for you and if you live in Texas, close to Houston let me know... kimmie1
27 Jan 2010
Having RSD/CRPS I would recommend a pain management doctor who is also a anesthesologist (sorry spelling) next a nuerologist. Do not go to a doctor who claims to treat chronic pain but are only physiatrist (spelling) and knows nothing about treating patients with narcotics or anti-depressants or seizure meds ect. all the meds that can help you with the pain. The other part is to accept that you will always have some pain but you will be able to manage it and not let it rule your life a feeling that you can put it in the background. I hope this helps if you want to discuss this further you can always leave me a private message Good Luck and God Bless
2 Nov 2011
After being diagnosis with CRPS II over a year ago my worker's comp stopped paying out once they found out that I was cleared for a spinal cord stimulator. When that happened I had a hard time finding a doctor that would see me and help me until today... I set up an appointment with Advanced Pain Management and in two days time I was seen and had a new plan of attack. It is the best feeling. Not only that he or shall I say Advanced Pain Management works with some network that will bill the insurance company for payment of prescriptions NOT YOU. Keep your head up as the answer's you seek are in that facility...
26 Jan 2010
I found this:
Is there any treatment?
Because there is no cure for CRPS, treatment is aimed at relieving painful symptoms. Doctors may prescribe topical analgesics, antidepressants, corticosteroids, and opioids to relieve pain. However, no single drug or combination of drugs has produced consistent long-lasting improvement in symptoms. Other treatments may include physical therapy, sympathetic nerve block, spinal cord stimulation, and intrathecal drug pumps to deliver opioids and local anesthetic agents via the spinal cord.
9 Oct 2011
Yes, RSD is a REAL disease. Unfortunately, physicians who do not keep up with new information in the medical field may have never heard of it.
Look up NORD.com. This is the National Organization of Rare Disorders; they have been a lifesaver to me. You can get information on participating in pain relief studies, physicians in your area that deal with RSD, and even support groups which deal specifically with RSD.
Don't give up and good luck to you!
26 Jan 2010
First; you are not alone. Although I dot not have RSDS, I do have cervical nerve root impingement, Fibromyalgia, and a ton of other arthritis and spinal issues along with sleep disorders. I know my medications fairly well, and alternative treatment options.
No matter what we all may have (diganoses); in the end we are both dealing with how to treat PAIN.
So many doctor's do not understand how hard it is to be in pain everyday, all day, with no break.
What you need is to find the right doctor, and don't stop until you find him/her. The right doctor will help you with medication and help find you the right treatment options (such as below).
I cannot see where you live, so I cannot make a recommendation as to a specific doctor - feel free to "friend" me :)
You could try to find a Pain Managment Center that inclused a staff of injection specialists and that provides many option methods of Pain Management (injections, accupuncture, accupressure, etc.).
19 Feb 2010
Melia357 where are you from hun?, sometimes the best place to start is with your family Dr., ask him or her for a referral to a Pain Specialist OR, walk into the closest hospital and tell them what's going on, don't stop talking until someone listens to you! YOU ARE NOT CRAZY! & you are not alone, if you can't get out, get on the phone, start calling, start with the hospitals, the walk-in clinics, every Dr's office in your town, someone out there knows someone that knows someone who can help you. If you are from Ontario I know someone who can help you, if you are from the USA I wish you luck, but I don't know a thing about the health system there. I hear you, I have RSD/CRPS & I had to fight real hard to be heard and it was a Dr.'s negligence that put me in this position, but if I learned one thing from being 'disabled' nothing is impossible. Yell from the highest hill, someone somewhere will answer you, I promise :)
15 Apr 2010
I have had RSD for almost 11yrs now. I was blessed to be diagnosed at the 3 month mark and sent to a pain management doctor/anesthesiologist. He was great and treated me for a long time until 2004 when the main doctor decided to move the office into the hospital and stop taking any medication management patients.
I have been going to a clinic closer to my home since 2004 and only in my last appt after all these years did I finally feel I met a knowledgeable and understanding doctor who is not going to push elective procedures like the SCS or drugs that I either know I'm allergic to or had previous problems with or ones that I don't believe in taking.
In less than one year the 1st doctor found out I am allergic to almost EVERY pain medication you can think of including Morphine, Methadone, Naproxen, Fentanyl, and so many others.
He found one long lasting narcotic that works for me and because I was only 31yrs old when I was in a MVA that caused RSD, I have remained on the same dosage for almost 9 of almost 11yrs even though many doctors before the DEA hit them hard offered me increases many times over; I refused knowing I had to learn to live with some of this pain as no medication will ever take it all away.
The doctors I've dealt with in the past 6yrs have been nothing but "legal drug writers" and I've been stuck there trying to find a good doctor but finding out none would accept my Medicare only insurance. I felt horrible and ashamed for having to go to this clinic as a real pain patient seeing drug seekers at each visit so brazen they would call people while waiting to let them know when they would have their "meds" and you could tell it was "for sale".
I was even treated as a drug seeker even with all my tests and medical records, clean urine tests, no problems and all other records saying I was a very compliant patient.
One doctor that I later found runs or owns this clinic (1 of 7 in my state) saw me one time, did no exam, told me I didn't have RSD and ripped up my scripts in front of my face. I was horrified and angry.
I told him calmly that he could do any tests known to man and exam me at least and he refused.
The other treating doctor that recently left never looked me in the eyes, asked me two questions every time; "How are you today and how is your pain today?", and sent me and my scripts out the door with no further discussion. It was all about time and money as the waiting room over flowed.
You are not crazy; it is unfortunate and you are not alone.
There are way too many of us facing troubles with doctors like this no matter where you live.
Personally if you have better insurance than Medicare, you may even want to look into an Internal Medicine doctor as they can take care of your overall health and either treat you or help you find a good pain doctor.
I am familiar with the area you live as I have a friend with RSD who lives near St Mary's.
It is a very rural area and good doctors are very hard to find there. My friend finally went to Pittsburgh and found a great doctor there and eventually was treated by a local doctor following the others protocol.
My prayers are with you as I totally understand but still can't believe doctors have the right to NOT treat us the way we should be.
It is much like the legal system; a drug seeker until proven different or guilty until proven innocent.
20 May 2011
Have you ever heard of the McGill Pain Index? if you could print this and show it to your Dr. maybe they will understand what we're going through. I know it shocked my doctor into treating my pain a little better.
What is the McGill Pain Index?
Quite simply, it is an index, put into the form of a bargraph, comparing the various types of Chronic Pain with "Causalgia". Causalgia is latin for Burning Pain and the original term for RSDS and now CRPS. While all types of Chronic Pain are not listed, they were included in the study.
As you can see, RSD is far and away the most painful form of Chronic Pain that exists today . A huge 42 on the scale! Any of you that also have other forms of Chronic Pain can now see why their RSD pain dominates their mind and body so much.
Many have asked for a picture of the McGill Pain Index, so here it is.(refer to the website) There are many versions out there. This one includes various types of childbirth pain as well.
This is a good tool to use with your loved ones to help them compare our pain with other diseases and problems in a form they can relate to.
It also helps you to see that you are NOT exaggerating your pain one little bit!
Feel free to make a copy of the McGill Pain Index for your own personal files.
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