Hello everyone, my injury started in my right ankle and spread up my leg and into my left leg and foot. I have a new pain management dr. And i really like him. He is willing to try new medications he tried another sympathic lumbar block (iv'e had 5) has explained all about the scs and is very sympathic. The rsd has recently spread into my left arm and hand. When i told him he said it is unlikely that it spread to my arm. He said rsd dosen't spread to the upper body if it started in the lower limb. I know it has spread, it is not in my head!! Should i stay with him?
Eileen

My RSD started in my foot and has spread to both arms and hands. Unfortunately most doctors are wrong when they say it doesn't spread to certain areas- My doc said it doesn't spread to eyes or mouth and I know that is not true. I just get too tired and frustrated disagreeing with him - but for now he gives me the meds I need...and he is nice so I will give him some articles on spread

Debbie

Hi Eileeen, I sorry you have RSD. Mine began in my shoulder the day after surgery. But of course I wasn't acurrately diagnosed for another 7 years. By then it had spread to the other side in my shoulder and then back to my left hand, then over to my right hand and then down my left and right feet and legs, actually full body, including internally. I can't say if you should stay with your Dr, but if I were considering SCS, I would do a lot of research, even out of state. How long have you had RSD? and were you diagnosed right away?
How did you hurt your ankle? Do you mind saying what meds you are on? It
is difficult dealing with this day in day out isn't it. Swimming is helping me I feel, My husband has been really helpful, around house and grocery shopping. Our daughter is married. They have both gone with me to meet my Dr. He is sympathetic too. Hope today is good for you. Loretta

Hi Eileen,

I'm so sorry that you have RSD also ((pain-free hugs)). My RSD started in my left leg after an ankle sprain when I was 12 years old (i'm now 13) and within 5 months it had spread to my right arm.

My PM Doctor diagnosed me with RSD in my arm and leg. Unfortunately like Debbie said, many Doctors are wrong and says that it doesn't spread to certain areas when it can.

I really hope you get the help you need soon,

Take care,
Alison

Hi loretta,
I sprained my ankle April 20, 2006 while playing baseball with my son. I had a terrible orthopedic who didn't believe me when I was still having so much pain. He said it will heal with time. I went on with my life. I have two boys and a girl and at the time worked full time as a police officer. So you can imagine how active I was. The pain was unbearable by october of 06 so I went to a new ortho who took my symptoms serious and diagnoised me with rsd. By the time I had all my testing to rule everything else out I didn't have my first sympathic lumbar block until jan 07. I have since changed doctors to this one I spoke about. He has me on gabapentin, lamictal, baclofen, and hydrocodone to use when needed. I take it usually at bed time not that it does anything for the pain but I can't be sleepy for the kids. He has no problem trying new meds. He has tried cymbalta and tramadol both made me sick. Do you have any suggestions for any other meds to try? My husband is really helpful too but works alot. He is a police officer too. I have been retired on a disability since march 08 but have been out of work since jan 07. The PD has really good sick time. I struggle every day to keep a smile on my face for my children. My crazy bad moods were starting to effect my kids they are now 11, 9 and 7. My 11 year old asks me about 5 times a day are you feeling ok today mommy? It breaks my heart. I just tell him that I feel great. Meanwhile I am cringing with pain. I push myself to the max for them. I know that it's not good. I am deterating. The pain is getting worse. I am finding it even harder to drive. Stress makes it even worse. I have a hard time saying no to people. Even if it means that I will sufer doing it. Like being a co leader for my daughters browne troop.
My dr. has recommended fusing my nerves in the ankle that the rsd started. Do you know anything about it. Also, I started having trouble swallowing hot foods.Could this be due to the rsd?
Sorry this is so long.
Thanks for listening,
Eileen

Hi Eileen...

I am so sorry for all you are going thru. I am a firm believer that RSD does spread . I was diagnosed last year and it started in my right shoulder ( along with TOS ). Then the left shoulder froze up, now my right foot is in trouble ! I did see a podiatrist last week and he asked me " You do know RSD can spread right ?" and I said "Well, it is certainly nice to finally hear those words " and I started crying ! He said that he has dealt with RSD for years !

I don't like to take to many meds either but I am firm believer that if you take a particular drug like Hydrocodone (Vicodine) and you keep it at a constant level( if you can handle it ) your breakthru pain is lessened because you have that level of meds in your system rather than taking them when you feel the pain . It takes longer for the meds to work at getting the pain level down verus attacking the pain at a constant level. I take a half 4 times a day no matter what because when I do have breakthru pain and need to take something else like Ibuprofen it doesn't take as long for the pain to go away or subside. Does this make sense ?? I know it works for me .

The one thing you need is a good support group and maybe sitting your family down, printing out an info sheet on RSD and explaining to them that your in pain all the time and you need their support to work thru this. That's what I had to do and it worked for me. They now know that I am not the person who used to work 50 -60 hours a week selling snowplows and dump trucks and was running around all the time, but I am someone who has this awful disease and just needs a little help along the way !

I hope this helps a little and hang in there! You have all of us here for you !

Dolfinz

hello there..
I have an an artical called "patterns of spread" I can email to you if you like, you doctor will find it in his journal of pain that all docs use aparently but the journal is huge.. this artical was written in 2000 and it made the diffrence to quite a few doctors and to WCB when deciding my case because it is found in the American Journal of Pain. however the study group is small so I attached others as well.. I will PM you with my email in case you decide you want them. It definatly helped WCB decide in my favor and agree I have spread to all 4 nlimbs, that and my docs notes now my signs are finaly showing up too.

be well,
Sandra

RSD full body, over 3 years.

Eileen I agree with Dolphinz about sitting the family down.. expecialy the kids.. they are alot more observant than we think... and by us telling them everythings fine when it isn't.. well it can cause bad misunderstandings.. I have one local RSD friend whose child was sure her ma must have cancer (in our suport group).

To her it meant that her ma must be dying.. Dora (the ma) didn't actualy find all this out for quite awhile after she was diagnosed with RSD unfortunatly, she just always tried to pretend that nothing was wrong.. her youngest was a woryer she said.. I tend to think it is all avoidable by being upfront with the ones we love they are stronger than we know, and more clever.. they know when we hurt.

Whatever you do good luck, also I found some of my bad moods were related to the drugs they were giving me to control the CRPS symptoms and yes swallowing hot foods can get dificult as can cold foods I like mine luke warm.. drinks as well.

Take care,
Sandra

A few thoughts. I think that rsd is still even by many docs who specialize in this unknown that is hard to really know if it is a connection or something different. For ex I have read here that eyes can have a connection and I have a huge eye issue plus my leg but a very well known rsd specialist said it didn't have a connection. Maybe he is right or maybe he is wrong but what ever you want to call it is pain. I think for me after so many docs and there are always pros and cons about the doc I have to focus as a whole will the doc help me. It is very hard to find a doc who will listen and work for you. If he will help you with the pain in your arm even if he doesn't call it rsd then I would stick with him. If he blows off the pain then you may want to look around. As for your kids. My mom has many other issues not with pain but other and she would try to hide it and I knew even from like 8 that something was wrong. There was so much worry and I really wished she would of talked to me and told me on how she was helping herself. At least I would of known and felt she was being treated. This also puts a lot of pressure on you which is unhealthy and I think effects pain level. Hang in there.

Hi Eileen, don't ever worry about your post being too long. I
have lots of time, but more importantly I am concerned and really care about you and your family. Your right, stress makes the RSD and pain worse. That's why what you could do before the RSD and what you can do now, you need to recognize are two different things. Being honest with your family is so very important for your health and their anxiety and sadness about you and your health. Being honest, appropriately according to age level, will build trust in you as their mother and will carry over to other areas of your parenting. Pushing yourself beyond your limits is unhealthy for your health and really doesn't set a good example for your children. If you take care of yourself and love yourself you set a wonderful example for your children loving themself and learning their limits, when to say yes and when to say no. We have one daughter that is 29, so she was nearly grown when I got my RSD. We played tennis together, water skiied, snow skiied, aerobics together, horseback riding, traveled to many countries as a family. She is married now for 8 years. They just moved to Chicago when her husband began working for American Airlines-commercial pilot. She flies home every two weeks for a few days, they both come when he can. It makes her so sad to see me like this.She has done depositions for RSD patients suing Drs. for not disclosing risks of their surgery including RSD. You asked me about what meds I'm taking. I also take Vicodin. Lorazepam-an anti-anxiety med. that works so well at keeping the sympathetic nervous system calmed down. I take 3 pills a day (2mg.) The two anti-depressants are Wellbutrin XL 300 in the AM. and Paxil 25 mg. They are effective for helping with the nerve pain.
I was taking 3200mg. of Gabepentin , but switched to Lyrica about 9 months ago. Both make you sleepy and gain weight. I struggle trying to get the weight off. I'm not giving up. I take Ambien CR for sleep. And because RSD is a disturbance of the autonomic nervous system, causing blood pressure problems , both high and low , I take Diovan 160 mg. and Toprol xl 50 mg. Any procedure, from drawing blood, for tests to going to the dentist should be
checked into. Since my original side was the left should and hand, I only let them draw blood from my right arm. Going to the dentist, I take antibiocs the day of the appointment and now use nitrous oxide (laughing gas. I'm so scared of getting it in my mouth.About possible surgery on your ankle, I don't know anything about the procedure. One thing for sure, is check it out thoroughly and get a specialist. We lived in Eugene, Or for years and moved to Arizona when our daughter was in college for Court Reporting. The Dr. here said I had Rheumatoid Arthriitis, but tests showed I didn't. So I flew back to Oregon to a Sports Injury Group, the hand Dr. knew in 30 seconds what I had and confirmed with Neuclear med tests. It's been said by a lot of Drs. that your best chance of going in remission is having the blocks within the first 6 months or even up to a year. After that, the pattern of pain signals going to the brain get stuck in the pattern. A study of ketamine being used to interrup that pattern was done here in Scottsdale at the Mayo Clinic. One of my girlfriends was an assistant to the 5 Drs. involved in it. It was being done in Germany, Australia I know for sure. In Germany, they put you in a coma for 5 days. No Thanks- It works for some. Two of the Drs. in the study are in Pittsburg Hershey Hospital and use Ketamine ( it is an anthesectic) The FDA approved of using it, but not as far down as a coma. The works for some a year and then needs to be repeated. very expensive I called and there was a very long waiting list, I think 2-3 years. I'm sorry about your moods. could be part meds, but RSD affects the frontal lobe of your brain, that affects judgment decisions, emotions. The memory problems are terrible for me. short term (Limbic System) forgetting what I wanted to say, grasping for a word, not being about to finish a sentence. Do you have headaches? I do, front of head and back of head, almost dailey. 24/7 pain and loss of energy, desire to do things we used to do is so hard. Be sure and don't drive after taking Vicodin- it is a fast acting med with a short lifetime. My Dr. said 3-4 hrs. I take two at a time. When I switched to Lyrica from Gab. I was about to go down from 6 pills a day to 4. My Dr. is part time Pyhchiatrist, teaching in Utah and california every week. He is from New York, Cornell, is a Neurologist and a degree in pharmacology. That is why I'm so comfortable with his caring for my RSD.Not to scare you, but two years ago I woke up and was dizzy, got up and passed out. My husband was upstairs -heard me get up but was at his office working. When I woke up, I crawled to the door and banged on it till he open it. I said call 911, had to say it 3 or 4 times, when the emts got there, they couldn't find a pulse and told my husband it wasn't good, really too late. then they got a faint pulse- bp was 90 over 60. 4 days in icu. It hasn't happened since, but my friends has had it happen 3 times. and my Dr. said it most likely will happen again. I had never had bp problems before;I had always been 125 lbs and now have gained 50 lbs. But like I said in my last post, we need to find things to be grateful for and know our limits,
I do as much as I can, but when I listen to my body I do much better, and those around me feel better. It's hard to hide the pain all the time. I have a quite place in our home where I can shut the door and have some quiet time.
Three children must be a challenge for quiet time. I miss my daughter so much. They have been gone a year. Hope some of this information helps. you have waited way too long to see your Dr. Somethings wrong there.Take care-hope some of this helps. It's not meant to be discouraging, I just wish I knew at the beginning what I had and would have had the best chance to go in remission. Shame on your Dr-waiting for the nerve blocks so long.Loretta