[jkl]

Hello

I have had swelling on and off in my left ankle over a period of 4 years for no identifiable reason (no injury or event preceding the swelling). In the past it lasted one or two months but this has now gone on for 7 months. I have been to an orthopedic surgeon a sports medicine doctor, family doctors (4), alternative health practitioners and am currently undergoing physiotherapy. I initially had swelling and heat and a lot of pain, although not so much on the skin but very much so on the bone. Before physiotherapy it was reddish purple but it is now more normal in colour. I had a CT scan and it was suggested that RSD could be present. My doctor doesn't seem to know what to do with me and I still don't know what is really wrong. I don't have blood clots (had a doppler), I do have bone loss, but I was also in a cast for about 6 weeks. Originally my doctor suspected stress fractures, but the physiotherapist, sports medicine doctor and orthopedic surgeon don't see any reason for stress fractures since I was an avid hiker but don't engage in high impact kind of exercise (like jogging). I don't have the burning skin symptom that many describe but my foot was always red/purple and warm to the touch before physiotherapy. It is not particularly sensitive to the touch except on the bone.

Can anyone tell me what I could suggest to my doctor to definitely diagnose RSD? Or is there a definitive diagnosis? This has changed my life as I used to be an avid hiker and and did dog training which involves running. The swelling doesn't go away, but it lessens at times. It still hurts to have a quilt over my foot at night although not as bad as it did a month or two ago.

Physiotherapy has helped with discoloration and mobility, but it is still swollen and I don't have good range of motion.

Any thoughts would be greatly appreciated....

Jan

[perceypor]

JKL

Go over your medical history with a fine tooth comb. There is no one test to diagnos RSD, however, there should be many signs and symptoms in your history. Go back over it, research RSD. It is in a limb, so that is one criteria, the temperature changes etc are all symptoms. I suffered for 17 yrs thru 15 surgeries and every chronic infection known. Not to mention nerve damage. The one test that confirmed it to my docs: THERMOGRAPHY. It is an expensive test, insurance companies won't pay because they say it is not definate, however, it is worth the expense. It will show the difference in body temp (if present) and it can confirm (to the experienced neurolgist) whether RSD is present/suspected. This is what broke my vicious cycle. Where are you located? Can you travel?

Let me know
Sabrina

[jkl]

Hi Sabrina

Thanks for your response to my post. I live on Vancouver Island in BC, Canada.

I haven't heard of a thermography test.

Is RSD something that can develop over time or is it something you have all your life? I had no symptoms until 4 and a half years ago. I had every diagnosis from rheumatoid arthritis, gout, stress fracture, but there was no reason for a stress fracture, I test negative to rheumatoid arthritis, the swelling I have is in the tissue not the joint and so I don't have gout.

I am not sure what to say to my doctor at this point. Maybe if there was more information about testing that could point me in the right direction, I could direct this her way. I have been refused a bone density test because I don't fit the criteria for that here. But there is no explanation for a stress fracture otherwise. So I can't imagine it will be easy to get testing for RSD which sounds more difficult to diagnose.

What sort of specialist would know about RSD? The orthopedic surgeon knew very little and my family doctor even less....

Thanks again.

Jan

[perceypor]

Hello Jan

RSD is has not been proven to be hereditary. It is the direct result of an injury to a limb. Go back four years, there has to have been an event (bump/fracture/slip off the curb/stumped toe/bump into something/surgery/heartattack). There has to be something there?
What area is the worse? Is there limited movement? Is there color change? Is there temp. change? Is there severe pain or burning? Is there sweating? If you show 2 or more of these symptoms, then you should be able to get the testing you need. Please go to American Pain Foundation website, join, and help pass the new pain bill. If this bill was already passed, you would have rights to the testing you need based on the pain. Insurance companies are giving us a hard way to go - that is because they say there is no one test. You have to get to someone that is willing to get into RSD. So many of them are not. If you cannot get you med. docs to help. Try a psych. Go the depression route. Don't stop. In the mean time, I will look around. I know there is a support group in your area that can help. Good Luck
Sabrina

[jkl]

Hello Sabrina

I do remember the first time I had the swelling it was after about a month that my foot had been sore. I do remember I had stubbed my toe, but it was really a minor thing. Over the last 4 years it would swell up for between 1 and 2 months then go back to normal. This is the first time it has lasted this long (8 months). The only thing that happened this last time was that my dog jumped on my foot while I was sleeping and I thought I had twisted it a bit. Again, this was really minor (or should have been). The worst area right now is my inner ankle and toes. My big toe sticks up instead of laying flat. There is very limited range and I have trouble with steps. It was very purple / reddish, but the colour is almost close to normal since I began physiotherapy. It was also very warm to the touch, and that is noted by several doctors - this lasted for months, but it doesn't feel particularly warm now. It is still swollen, and my main problem is having limited range of motion and soreness after any length of walking. It was severely painful at first, less now if I don't walk on it. The pain when it has been really bad is more like a pulsing feeling, and I don't recall noticing any burning sensation, which is the one thing that doesn't seem to fit with RSD. Still no-one has any explanation for what's wrong.

I live in Canada and I've been looking for resources here or specialists who know something about RSD so I can at least get a diagnosis (even if it's not RSD). After my foot swelled in April I went to the hospital and each doctor said that if it wasn't gout (which it isn't) then it was the reaction to an injury. But there was no injury and that is the big mystery. I have always had a very healthy lifestyle and positive attitude. This is just one of those very strange things where I seem to be in a medical loop that goes nowhere... I will keep searching!

Is there any relationship between RSD and allergies? I have some allergies and also an underfunctioning thyroid (but am now on meds for that).

thanks for your thoughts.

Jan.

[perceypor]

You have described RSD to me. The injuries are always minor, if known and the pain is always disproportioned to the actual site. Allergies and RSD YES. Chronic laryngitis, chronic sinusitus, chronic tonsilitis. IT"S ALL RELATED. You have to get that history together, note everything that's happening with that left side and MAKE someone listen to you. I don't know what else to recommend at this time, but, I will try. I will get you some help. You don't have to have the burning all of the time. A lot is still not known. You have the right to a proper diagnosis and proper pain control and you will find someone to listen. I can show medical records I have for everything you are explaining and they didn't diagnose me for 17 years!

Sabrina.

[KELLYP]

JAN, RSD CANNOT REALLY BE DIAGNOSISED WITH A MACHINE. THE DOCTOR HAS TO HAVE SOME SORT OF KNOWLEDGE OF IT IN ORDER TO BE ABLE TO DIAGNOSIS YOU. FIND A LOT OF LITERATURE ON IT AND GIVE IT TO YOUR DOCTOR TO READ. YOU CAN GO TO THE RSDSUPPORT WEBSITE AND THERE IS A LADY ON THAT SITE THAT HAS A WONDERFUL LIST OF DOCTORS. SHE HAS MANY DOCTORS IN MANY STATES. MAYBE SHE CAN DIRECT YOU TO SOMEONE THAT CAN HELP YOU OUT. IT IS WORTH A TRY. HANG IN THERE AND KEEP ON FIGHTING FOR YOURSELF CAUSE THERE IS NO ONE ELSE THAT WILL DO IT FOR YOU. THE ONLY THING WE ALL SEEM TO HAVE IN COMMON IS THE PAIN AND THE NAME, THERE ARE SO MANY VARIABLES TO THIS STUPID DISEASE. WE ALL NEED TO REMEMBER THAT WE HAVE EACH OTHER TO TALK TO AND TO GET HELP FROM. BEST OF LUCK AND KEEP ON GOING. ONE DAY I HAOPE WE ALL CAN BE PAIN FREE.
KELLY

[jkl]

Thanks Kelly and Sabrina

So far RSD is the only thing that makes even partial sense to me and believe me I've run the gamut of doctors and specialists.

Will keep doing my own research and hopefully I can find a specialist on the west coast of Canada. I have paid a fortune in alternative therapies, vitamins, drugs etc. and I am pretty skeptical to any "quick fix" ideas, especially when my condition seems such a mystery.

thanks again for the support.

Jan.