Reflex Sympathetic Dystrophy or RSD

In this photo you can see the size difference in both legs due to RSD.
In this photo you can see the size difference in both legs due to RSD. | Source

RSD and Me

I am writing this hub from a personal standpoint of what RSD is, and how it has affected me. For the record I am not a licensed health care professional.

You can see how the ankle is quite swollen and the skin is dry and cracked.
You can see how the ankle is quite swollen and the skin is dry and cracked. | Source

What is RSD?

RSD (Regional Sympathetic Dystrophy) is also known as CRPS type 1 (Complex Regional Pain Syndrome). Both names are synonymously used. This is a malfunction in the nervous system that affects the skin, muscles, bones, circulatory system, nerves and blood vessels.


History of RSD

The first known case of RSD/CRPS dates back to the 1860’s during the American Civil War. Soldiers were experiencing a burning pain after having bullets removed. It was named Causalgia, a Greek word meaning a burning.

Who Can Get RSD?

Anyone at any age can get RSD, but it is more likely to happen between the ages of 40-60, and is more prevalent among women. The younger the person the better the prognosis will generally be.



My Diagnosis

I was diagnosed with RSD four months after having fractured my fibula bone in the bottom of my leg, due to abnormal swelling from my calf and down into my foot, ankle and toes. Most cases of RSD will be in either the arms or legs but can be found in other parts of the body as well and can spread.

Various tests were performed such as an ultra sound, bone scan, and x-rays. In my particular case I had an injury where the blood was flowing too fast and washing away the calcium needed to heal the bone properly. My body reacted to this by causing swelling to the injured leg preventing me from using it properly. The sympathetic nerves were acting over-time so to speak and this caused a burning pain turning the skin color a shade of red.


Seeking Medical Help for RSD

The best time to seek treatment for RSD or CRPS is as soon as possible, as the longer it is present (any time over 6 months) the more likely the person will become immune to treatment. There is the possibility of having to live with chronic pain for the rest of ones life.


My Treatment

As soon as I was diagnosed with RSD, physiotherapy, ice applied to my leg and foot, and a compression stocking were all recommended. Physiotherapy was started three months ago, going twice a week but has now been reduced to once per week. I was given exercises to do three times a day, and was told to apply an ice pack to the swollen areas three-four times throughout the day. At each physiotherapy session the therapist manipulates and massages my foot and toes. He then does acupuncture, which involves five needles for fifteen minutes. I'm not sure how long I will have to continue doing this, or if the RSD will ever completely go away.


Causes, Symptoms & Treatment Options for RSD

Causes of RSD
Symptoms of RSD
Treatments for RSD
Tissue injury with minor trauma such as a sprain
Swelling
Physiotherapy
Surgery
Burning
Aqua therapy
Bone fractures
Pain anywhere from moderate to severe
Accupuncture
Carpal tunel
Skin changes such as color, dryness, hot or cold to the touch, sweating
Drug Therapy
Infections
Loss of motion and or stiffness
Electrical nerve stimulation
Stroke or heart attack
Hair and nail changes
Laser therapy
Some cervical spine or spinal cord disorders
Bone changes
Ice and or cold water
Medications
Joint tenderness
Sympathetic nerve block
 
Muscle spasms
 

If you or someone you know are suffering from the above symptoms you should seek medical attention right away. The earlier RSD diagnosed, the greater the changes will be for it to go into remission. If not treated you can lose the ability of the effected limb to function properly.

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Comments 65 comments

Just Ask Susan profile image

Just Ask Susan 3 years ago from Ontario, Canada Author

Randi, I keep meaning to message you and ask you how you're doing. Better I hope.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Teresa, It was but has improvement quite a bit. Thank you.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Hi Janis, It's getting better and better everyday.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

innerspin, I never seem to do things the easy way :) I quit smoking and I tend to think this has helped immensely with the RSD along with the Physio Therapy. Thank you for reading and for commenting too.


btrbell profile image

btrbell 4 years ago from Mesa, AZ

Oh, I forgot. Mine started as a result of a broken foot. I got the temporary handicapped permit because of that. I didn't need it so much until I started to go out on my own and it was too difficult! By all means, though, if it will help you, get it. If you, like me, have good days and bad days, you only need use it when you need it!


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

brtbell, I'd thought about getting a handicapped permit but never did. But then when it was really bad I never drove during that time. Glad you hear that you're feeling better today and hope that it keeps getting better every day.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

GoodLady, It's so much better now and thank you.

Judi, The treatments did seem to help as I'm in a lot better shape now, and thank you.


Teresa Coppens profile image

Teresa Coppens 4 years ago from Ontario, Canada

This is new information for me also. I have never heard of this condition but Susan it looks painful and uncomfortable. I hope you continue to improve with future visits with the specialist. Thanks for sharing!


Janis Goad profile image

Janis Goad 4 years ago

I haven't heard of this, so your hub is educating people about this! Thanks for writing about it. I hope you get better soon.


innerspin profile image

innerspin 4 years ago from uk

Breaking a leg was bad enough, without having to deal with the further problems. I'm glad you found a diagnosis, and helpful treatment. It does help when you can learn about your condition and understand what's going on. Thanks for sharing your story.


btrbell profile image

btrbell 4 years ago from Mesa, AZ

Thank you, Susan. I am feeling much better today! I didn't even use the handicapped parking when I went to vote today! I hope all goes well with you!


Judi Bee profile image

Judi Bee 4 years ago from UK

I've never heard of this before and sad that I had to hear about it via your personal experience - hope the treatment helps.


GoodLady profile image

GoodLady 4 years ago from Rome, Italy

Really sorry you have had to deal with all this and so grateful you shared your experience of the problem and how you are dealing with it. So pleased to read that your pain is less. I do know what leg pain is like since I have it all the time too, but not for RSD, so you have ALL my sympathies. Bless.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Randi, No I'm not experiencing those symptoms. How scary to have tripped over your cat. I know that I'm so careful now especially when walking down the stairs into the basement where I first fell. I'm not looking forward to the icy winter season at all. I hope those symptoms you're experiencing do go away soon.


btrbell profile image

btrbell 4 years ago from Mesa, AZ

I am really glad you are feeling better, also. This afternoon I was so proud of myself seeming to return to "normal" Ironically, I tripped over one of the cats this evening and am pretty uncomfortable. What a strange disorder this is. I clearly didn't reinjure my foot but I sure did set off the RSD.I am awollen, red and have goofy shooting pains. I can bear weight on it but I lose my balance. It is, thankfully, starting to feel better, though. I do have a question for you. Do feel more confused since this happened to you and do you cry more?


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Randi, So glad to hear your're doing better except for the migraines and dyslexia. I'm walking a lot better, have stopped the acupuncture and PT. Still swelling but not nearly as bad as it was. Was supposed to go back to the surgeon but I had to cancel the appointment so not sure when I'll get back to him. But the way things are going I may not need to.


btrbell profile image

btrbell 4 years ago from Mesa, AZ

Thank you so much! Yes, it is doing really well. Most of the discoloration and swelling are almost all gone! I have been doing the therapy with success, no nerve blockers! I do, however have some other issues that I have been told are related. I am gettiung optical migraines, dyslexia and I cry at the drop of a hat :(

How are you doing? Have you kicked (not literally, that would hurt!) the habit? Have you been to the surgeon yet?

Randi


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

btrbell, I wanted to wait a bit before replying to you so that I could ask if your RSD has improved at all. How are you doing?


btrbell profile image

btrbell 4 years ago from Mesa, AZ

Thank you Susan. I am at the beginning stages with a fairly mild case. I would definitely like to keep in touch. Good luck with your surgeons visit. and congratulations on quitting smoking! A difficult thing to do. I quit 2 years ago and believe me, these past few months have made me want to start again! But I won't!


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

btrbell, Sorry to hear that you are going through this. It was a very long road for me. Almost a year now but a few weeks ago I really started to notice an improvement. The swelling has gone down quite a bit and the pain is nowhere near what it was. I quit smoking in June and I think this may have helped ... I have an appointment with my surgeon in October and he'll be taking ex-rays again.

Please let me know how you're doing. Wishing you a speedy recovery.


btrbell profile image

btrbell 4 years ago from Mesa, AZ

Susan, thank you so much for this hub. I broke my foot in May and was diagnosed with RSD 2 weeks ago. It is a mix of relief and concern at the moment. I was beginning to think I was crazy. I started physical therapy immediately and can already see some differences. I hope you are doing much better.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Melovy, It is slowly getting better and I'm hoping that it will completely go away. Still have the swelling but it's not as bad as it was a couple of months ago. Walking with only a slight limp .... to me that's great progress :)


Melovy profile image

Melovy 4 years ago from UK

Gosh Susan, that doesn't look like fun. I hope it's better now!

(Very interesting hub, by the way - I almost forgot to say.)


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

jellygator, I hope this helps your husbands friend.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

fpherj, Thank you for the good wishes. It would be so much nicer if the darn thing would stop swelling .... takes so long.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

sholland, The PT and acupuncture do help but the swelling is still there, it's been ten months now since I fractured the bone. The bone has still not healed totally .. but you know me, I never give up :)


jellygator profile image

jellygator 4 years ago from USA

This sounds EXACTLY like something my husband's best friend developed just a couple of weeks ago. He was diagnosed with cellulitis, but he said the docs never isolated a bacteria. I've sent this on to him via FB and hope it helps.


fpherj48 profile image

fpherj48 4 years ago from Beautiful Upstate New York

I appreciate you sharing this with us....I had no info on this prior to your hub...But, I am very sorry of how you had to learn about it.

I am relieved for you that you are receiving treatment and the proper attention needed.

I hope for you a complete healing Susan. Your positive attitude and self-education will make a positive impact. UP++


sholland10 profile image

sholland10 4 years ago from Southwest Missouri

Oh my gosh, Susan! That looks painful. Also, my mother had knee replacement surgery on both knees years before she passed away in 2010. Her legs looked just like your picture. She was never diagnosed, but she had the same symptoms. She said, "It burns like fire." We were helpless. I hope your physical therapy is helping.

I hope others see this for awareness. The last several years of my mother's life could have been so different if she had had treatment. Thanks for sharing what you have had to go through.

Votes and shares!


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

raciniwa, Thank you.


raciniwa profile image

raciniwa 4 years ago from Naga City, Cebu

this is the first time i have encountered this ailment...so sorry you got this...you do take care...

thank you for the information...


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

b. Malin, Thank you so much. When I was first diagnosed my initial comment to the doctor was , "I have what?" Even after he explained it to me I was a bit confused. I hope that it will go away but from what I've looked into and read, I don't think it will ever go away 100%.


b. Malin profile image

b. Malin 4 years ago

Oh Susan I'm so sorry, it looks so Painful...I too had never heard of RSD before, and sadly, before you were inflected, I'll bet you hadn't either. Thanks for the Educational read. My thoughts and Prayers are with you for a full recovery my Friend.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Kaili, Many people have not heard of RSD before. Thank you.


Kaili Bisson profile image

Kaili Bisson 4 years ago from Canada

Oh my goodness Susan. I have never heard of this before. Hopefully you will have a full recovery.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Hyphenbird, Most of my family members had no idea what RSD was until I explained it to them. I hope that your friend Ruby does not have much pain with this.


Hyphenbird profile image

Hyphenbird 4 years ago from America-Broken But Still Beautiful

This is great information. Many people may have this and not know what it is. My beloved elderly friend Ruby has this. You describe it so well and offer wonderful helpful tips. Thank you.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Thanks Doc :)


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

xstatic, It's a lot better than what it was. Thanks so much.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Thank you Ruby.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Pamela, I know you wrote an excellent hub on CRPS.

Thank you, I too hope that it continues to improve.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Mhatter, So sorry to learn this. It must be very difficult.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Perspycacious, Thank you for reading and for your comments.


drbj profile image

drbj 4 years ago from south Florida

Just checking, Susan, to learn if your foot/feet are 'up' while you are reading this? Yes? Good girl! May your RSD begone stat!


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Deborah, The only time it gets painful is when I overdo it. Thanks so much.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Uninvited Writer, The treatments help quite a bit.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Daffy, The PT and acupuncture help, and surprisingly it is no longer all that painful. I'm still able to get around, just a bit slower than I used to. It can be frustrating at times.


xstatic profile image

xstatic 4 years ago from Eugene, Oregon

Scary stuff Susan, I hope your treatment goes well and you are fid of the problem. I am glad to read in earlier comments you are getting better.


always exploring profile image

always exploring 4 years ago from Southern Illinois

This looks so painful. I watched the video about Paula. I'm glad you are getting the helpful treatments. I have never seen this before, although i studied it in training. Here's wishing you a speedy recovery..


Pamela99 profile image

Pamela99 4 years ago from United States

Susan, I have heard of this before but I didn't know all the information you presented. I as sorry you are suffered from RSD and surely hope you continue to improve.


Mhatter99 profile image

Mhatter99 4 years ago from San Francisco

my disability is turning me to a brilliant vegetable. my poetry is a by-product, though i cannot recite, as i have lost the ability to talk.


Perspycacious profile image

Perspycacious 4 years ago from Today's America and The World Beyond

Just Ask Susan: We learn something every day. That shuld mean that over time more will be learned and understood about this malady. Let's hope, along with you, that more will be, soon.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Jimmy, The treatments I have don't really hurt they make me feel better. Thanks so much.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

RH, Improving every week. I really think the acupuncture and PT is helping it.

Thanks.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Ghaelach, Always so nice to see you. Hope you're doing well. Usually now I only have a minimal amount of pain when I walk too much or don't get my foot up during the day. Things are looking up :)


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

bankscottage, Thank you for letting me know this. I will keep this in mind for my next specialists appointment.


Just Ask Susan profile image

Just Ask Susan 4 years ago from Ontario, Canada Author

Bill, Thanks you. It's a lot better now than when I first started PT.


Deborah Brooks profile image

Deborah Brooks 4 years ago from Brownsville,TX

I am so sorry Susan,.. I hope you are not in a lot of pain.. I hope the therapy is helping. I am sure it is.. thank you fro sharing and letting us know about this..

voted up

Debbie


Uninvited Writer profile image

Uninvited Writer 4 years ago from Kitchener, Ontario

I've never heard of this condition. I hope the treatments at least help a bit.


Daffy Duck profile image

Daffy Duck 4 years ago from Cornelius, Oregon

It sounds and looks painful. Because of the treatments you apply so often you probably don't get out very much. Are you able to get around that problem? IS it frustrating for you?

Best wishes!


jimmythejock profile image

jimmythejock 4 years ago from Scotland

That looks really painful Susan and some of the treatments sound painful too. I wish you luck and hope that there is a cure.....jimmy


RealHousewife profile image

RealHousewife 4 years ago from St. Louis, MO

Hey Susan - that is really interesting!

I am so sorry you got this! I worked for a lawyer once who had a client with this condition. I don't remember much about it - only thinking this guy is never gonna win because they jury won't understand how he got this. He had not been diagnosed properly so I believe it was untreatable and nearly unheard of!

I hope your treatment continues to help you improve! I wish we had you to do the research when we had that case! lol You explained it really well!


Ghaelach 4 years ago

Hi Susan.

I've learnt a lot of new illnesses here on HP and you've just hit me with another.

I'm not going to come out with that dreaded sentence "Get Well Soon". I've written and spoken so often about my problem and still people say "well I hope you get well soon". They don't listen or can't read.

I realise what you are going through. I go through something similar. Some days are bad and others are very bad.

Keep your head up and I hope the rest of Sunday is a nice one and a bit less painful.

LOL Ghaelach


bankscottage profile image

bankscottage 4 years ago from Pennsylvania

RSD (CRPS) can be a very painful, debilitating condition. You seem to have been prescribed the conventional, early therapies. You may want to go see an anesthesiologist or chronic pain doc that can offer a sympathetic block or other blocks. While these are not first line therapies, you may not want to wait too long to try them. If caught early enough, sometimes a series of sympathetic blocks and relieve or reverse the condition.


billybuc profile image

billybuc 4 years ago from Olympia, WA

Wow! I have never heard of this. It looks painful at the very least. Thank you for shedding light on a disease I am sure most are ignorant about. Great hub and my best to you always.

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