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My Experience With Reflex Sympathetic Dystrophy (RSD)

In this photo you can see the difference in size between my left and right legs due to RSD.

In this photo you can see the difference in size between my left and right legs due to RSD.

RSD and Me

I am writing this article from my personal experience of RSD and how it has affected me. I am not a licensed healthcare professional.

What Is RSD?

RSD (regional sympathetic dystrophy) is also known as CRPS type 1 (complex regional pain syndrome). Both names are synonymously used. This condition is characterized by a malfunction in the nervous system that affects the skin, muscles, bones, circulatory system, nerves and blood vessels.

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.

My Diagnosis

I was diagnosed with RSD four months after I 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 they can also occur in other parts of the body as well and can spread.

In my case, various tests were performed such as an ultrasound, 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 working over-time, so to speak, and this caused a burning pain turning the skin color a shade of red.

History of RSD

The first known case of RSD/CRPS dates back to the 1860s 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 it is more prevalent among women. The younger the person, the better the prognosis will generally be.

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 six 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 one's 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.

I started physiotherapy three months ago. At first I went twice a week, but now it has been reduced to once per week. I was given exercises to do three times a day, and I was told to apply an ice pack to the swollen areas three to 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 15 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

CausesSymptomsTreatments

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

When to Seek Help

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

Learn More About RSD

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

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© 2012 Susan Zutautas

Comments

Susan Zutautas (author) from Ontario, Canada on January 02, 2013:

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

Susan Zutautas (author) from Ontario, Canada on November 08, 2012:

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

Susan Zutautas (author) from Ontario, Canada on November 08, 2012:

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

Susan Zutautas (author) from Ontario, Canada on November 08, 2012:

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.

Randi Benlulu from Mesa, AZ on November 08, 2012:

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!

Susan Zutautas (author) from Ontario, Canada on November 07, 2012:

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.

Susan Zutautas (author) from Ontario, Canada on November 07, 2012:

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 from Ontario, Canada on November 06, 2012:

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 on November 06, 2012:

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.

Kim Kennedy from uk on November 06, 2012:

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.

Randi Benlulu from Mesa, AZ on November 06, 2012:

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 Brown from UK on November 06, 2012:

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

Penelope Hart from Rome, Italy on November 06, 2012:

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.

Susan Zutautas (author) from Ontario, Canada on November 01, 2012:

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.

Randi Benlulu from Mesa, AZ on November 01, 2012:

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?

Susan Zutautas (author) from Ontario, Canada on October 30, 2012:

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.

Randi Benlulu from Mesa, AZ on October 30, 2012:

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

Susan Zutautas (author) from Ontario, Canada on October 30, 2012:

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?

Randi Benlulu from Mesa, AZ on September 24, 2012:

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!

Susan Zutautas (author) from Ontario, Canada on September 24, 2012:

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.

Randi Benlulu from Mesa, AZ on September 23, 2012:

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.

Susan Zutautas (author) from Ontario, Canada on September 07, 2012:

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 :)

Yvonne Spence from UK on September 06, 2012:

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.)

Susan Zutautas (author) from Ontario, Canada on July 04, 2012:

jellygator, I hope this helps your husbands friend.

Susan Zutautas (author) from Ontario, Canada on July 04, 2012:

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

Susan Zutautas (author) from Ontario, Canada on July 03, 2012:

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 from USA on July 03, 2012:

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.

Suzie from Carson City on July 02, 2012:

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++

Susan Holland from Southwest Missouri on July 02, 2012:

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!

Susan Zutautas (author) from Ontario, Canada on June 30, 2012:

raciniwa, Thank you.

raciniwa from Talisay City, Cebu on June 29, 2012:

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

thank you for the information...

Susan Zutautas (author) from Ontario, Canada on June 07, 2012:

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 on June 06, 2012:

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.

Susan Zutautas (author) from Ontario, Canada on June 06, 2012:

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

Kaili Bisson from Canada on June 05, 2012:

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

Susan Zutautas (author) from Ontario, Canada on June 05, 2012:

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.

Brenda Barnes from America-Broken But Still Beautiful on June 04, 2012:

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.

Susan Zutautas (author) from Ontario, Canada on June 04, 2012:

Thanks Doc :)

Susan Zutautas (author) from Ontario, Canada on June 04, 2012:

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

Susan Zutautas (author) from Ontario, Canada on June 04, 2012:

Thank you Ruby.

Susan Zutautas (author) from Ontario, Canada on June 04, 2012:

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

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

Susan Zutautas (author) from Ontario, Canada on June 04, 2012:

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

Susan Zutautas (author) from Ontario, Canada on June 04, 2012:

Perspycacious, Thank you for reading and for your comments.

drbj and sherry from south Florida on June 04, 2012:

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

Susan Zutautas (author) from Ontario, Canada on June 04, 2012:

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

Susan Zutautas (author) from Ontario, Canada on June 04, 2012:

Uninvited Writer, The treatments help quite a bit.

Susan Zutautas (author) from Ontario, Canada on June 04, 2012:

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.

Jim Higgins from Eugene, Oregon on June 03, 2012:

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.

Ruby Jean Richert from Southern Illinois on June 03, 2012:

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..

Pamela Oglesby from Sunny Florida on June 03, 2012:

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.

Martin Kloess from San Francisco on June 03, 2012:

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.

Demas W Jasper from Today's America and The World Beyond on June 03, 2012:

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.

Susan Zutautas (author) from Ontario, Canada on June 03, 2012:

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

Susan Zutautas (author) from Ontario, Canada on June 03, 2012:

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

Thanks.

Susan Zutautas (author) from Ontario, Canada on June 03, 2012:

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 :)

Susan Zutautas (author) from Ontario, Canada on June 03, 2012:

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

Susan Zutautas (author) from Ontario, Canada on June 03, 2012:

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

Deborah Brooks Langford from Brownsville,TX on June 03, 2012:

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

Susan Keeping from Kitchener, Ontario on June 03, 2012:

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

Daffy Duck from Cornelius, Oregon on June 03, 2012:

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!

Jimmy the jock from Scotland on June 03, 2012:

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

Kelly Umphenour from St. Louis, MO on June 03, 2012:

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 on June 03, 2012:

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

Mark Shulkosky from Pennsylvania on June 03, 2012:

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.

Bill Holland from Olympia, WA on June 03, 2012:

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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