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SWOLLEN FEET/ANKLES/CALVES, HAVE RSD&FIBRO CAN RSD SPREAD FROM UPPE...
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SWOLLEN FEET/ANKLES/CALVES, HAVE RSD&FIBRO CAN RSD SPREAD FROM UPPER TO LOWER LIMBS & CAUSE SEVERE SWELLING?

I think I posted in the wrong place before, sorry about that.
I've had RSD for about 4 years now, and was recently diagnosed with Fibromyalgia as well. I have had a rough ride for the past 4 yrs, but recently it has gotten much worse. I've seen countless specialists and been on a few support group sites, and it seems I've heard so many different views on how RSD really works. Mostly a disagreement from people who actually have RSD, and doctors who treat it. I've had upper extremities RSD for most of the 4 yrs, both caused by surgery. One was a spread from one side to the other after surgery on the opposite side.
I've recently developed severe pain in my feet/ankles & calves, with sharp stabbing pains in my calves, and the burning pain in my feet/ankles & calves. Then my feet swelled up to twice their size, and they haven't gone down since. The tops of my feet are raised up swollen and my ankles and calves are swollen severely. Needless to say they hurt like crazy.
I became very worried about the swelling as everyone was telling me there were serious reasons feet and legs can swell, so I finally decided to go to the ER and find out what was going on. The doctor there did a host of tests, blood tests, urinalysis, EKG, Chest Xray, tests for blood clots, kidney, liver & heart problems, tests for thyroid, and diabetes, pretty much everything was tested and everything came back completley normal. So, in the mean time while waiting for some tests to return, the doctor asked me why I was on so many medications. I told him I had RSD. Now here's the good part. He said, "what's that?" no kidding, in 2007 with millions of people suffering terribly and their lives pretty much gone as they once knew it, here is an ER doctor who had no idea what RSD was, I said they now call it CRPS, nothing, he didn't have a clue. This to me is very, very upsetting. This to me validates the fact that RSD is not now, still, getting even close to enough research or press that it so deserves. Just go on the internet and you will find site after site after site that has people who suffer from RSD, and many who suffer from both RSD and Fibromyalgia. To find an ER doctor who has no idea what that is, is very sad to me. This was a very nice doctor, don't get me wrong, very plesant, great bedside manner, he knew I was very concerned and scared that my feet and ankles were so swollen and he tried his best to ease my mind that there was nothing showing up that was "serious" that was causing it. Of course he could not tell me if it was or was not from RSD, he didn't even know what RSD was. He told me not to worry and although he could not find an answer for me, he was not worried, and I shouldn't be either. Well, I felt very relieved that I didn't have a heart problem or other internal organ problem ect, but the fact still remained, my feet were as big as elephants and hurt like heck.
So, next I went to a health food store and bought a natuaral diuretic and I used those tight stockings, both of which did nothing, the swelling continued, actually I think the swelling got worse. This swelling, I might add, just came out of no where. 1st my feet began to hurt real bad, like I had been standing for 3 days or something, but I hadn't, then suddenly they swelled up like balloons.
Needing to get to the bottom of this, I asked many on my support group if anyone had had anything similar happen, and of course many did, I asked these people who have RSD and who better to ask. I wanted to know could RSD just jump and spread to the lower limbs? Well, they said absolutely, and it had happend to them and still was happening to them.
But then if I asked a doctor, they said , oh no, it just doesn't spread like that. It just can't spread from upper to lower for no reason. Conflicting stories here.
I then went to another specialist, showed him my feet and ankles and said I believed that the only answer was that the RSD had to have spread to my feet and legs. When I 1st had the RSD in my upper extremites I had sever swelling and still do often times. What else could it be? Every test had rules everything else out, and many had told me they had this happen to them. I was supposed to have back surgery a while back, but they refused to do it because of the "extremely high risk of spreading the RSD to the lower limbs" so they were saying that yes it can spread to the lower limbs, of course they probably meant because surgery was invasive and could cause it because of that. But this specialist I recently went to say, no way, RSD just can't spread that way. I said well then what is causing it because everything else has been ruled out. He really never gave me a straight answer I don't think, but after examination and a long talk he told me that I now also had Fibromyalgia to go with my RSD. Oh joy.
I said well can Fibro do this to my feet? He said no. I expressed that the many people I've been in contact with on RSD sites have had just that happen. They have had upper extemity RSD and then out of no where they now have lower limb RSD and swollen feet ect. And what about the many, many documented cases of people with full body RSD? They are out there. A few on the site I go on a lot. I couldn't imagine full body RSD, but even according to the RSD organizations, there is full body RSD. Although not the norm, it happens nonetheless. So, why would this doctor refuse to say my swelling and pain in my feet and legs was the RSD spreading? I don't know, but I really, really need answers. I'm desperate for answers. When you have something that you got from a simple surgery and it is something you've never heard of in your life, and it basically changes your life, you tend to want to know as much about it as you can. Especially when they tell you, there is really no cure, really no real one treatment, and you most likely have this for life. I did a lot of research, and every thing I read, rather a book or online stated that indeed RSD does and will spread in many cases. Some just from one side to the other, as mine did pretty fast, and some that spread to unusual areas, and some that spread to the lower areas, or upper from lower, ect, and some, not a lot, but some end up with full body RSD.
Okay, so this is what I know from reading and reading and reading. But, the doctor I am currently seeing will not say that this is something that can happen.
I suppose my question is, can RSD spread from the upper limbs, to the lower limbs? I do have nerve damage in both my feet from a back injury and a fall that demolished one of my feet when my back went out and I fell and twisted it, stepped on it backwards, because I had no feeling in my feet after sitting for a short period of time and when I went to get up, I had nothing there to support me, so down I went, but that was years ago and I haven't had any problems with my feet after the badly damages foot I thought healed, it was supposed to have surgery immediately, but the insurance company refused to authorize it, so sat in a cast for over a year and finally just took it off and said forget it. So, until this out of nowhere pain and swelling came, I hadn't had any problems with my feet any more. I have heard that RSD sort of feeds off of nerves, so it made sense to me that the RSD could have hit my feet.
But I will ask, can RSD spread from the upper extremities to the lower out of the blue,? and can it cause severe swelling that I have had in my feet/ankles/calves for months now?
I've posted to a few other sites, but no one ever answers, its so frustrating. I just want to know what I'm dealing with. I now have to find out what I'm dealing with with the Fibromyalgia, although I had been reading that, that was something that often happened with people with RSD, so I wasn't extremely surprised to be told about it, not at all happy news, but at least I was given a reason for some of my symptoms. The swollen, painful feet, I can't get any answers, from my current doctor anyway. He is supposed to be a specialist, but how can I take his word for this NOT being RSD, when I've heard so much to the contrary?
If someone can please answer and tell me for sure what they think is going on, I would be so thankful and it would so greatly appreciated.
Hoping to hear from someone soon, thanks for listening and sorry this was so long.    
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10 Comments Post a Comment
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Avatar_f_tn
It was interesting reading about your experience. I too have recently experienced painful  swollem ankles after suffering RSD in both arms, hands, wrists and knees after a 3part fracture of the left humerus in February 2005.Like you my impression is that not many Doctors are aware of the painful and disabling effects of this condition.I have been hopeful of a remission of RSD but feel this is now unlikely and find I hate the thought of living like this. I am sorry I don't have any answers for you and I have been a Registered Nurse for many years.
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Avatar_f_tn
I had surgery for thoracic outlet, i now have rsd in whole upper extremities, now it has spread to lower extremites. I need nerve blocks to stop it, my doctor is trying to get me in quick. I cant type long because my neck hands and shoulders kill. I know a lot about RSD. I am on several forms so i also forget my screen name, this is also do to the fact i now have short term memory loss due to that surgery.   I wish i could give you my email but some of these sites dont allowe it, thats why i dont like these sites. because if you have question much easyer to email.  Let me know   Freezen !
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Avatar_m_tn
I can help a bit I suppose, if nothing at all by being where you are and understanding you a bit.  

On March 20, 1998 I was crushed at work as a general contractor.  This was a Wednesday.  My arm hurt that day so I was told to take Thursday off.  Friday came, not a whole lot of "regular" pain, but something different.  

With that I thought, OK, its getting better, I will work Saturday.  Now Saturday was always double time pay no matter your weekly hours so naturally I was looking forward to that.

My friends and I went to the bar Friday night for a few drinks.  After a few hours, we always met at the coffee joint in town for some sobering cups pf coffee.  Soon I got the most sobering experience one could imagine.  

While enjoying our coffee, my right hand blew up like a balloon.  I tried to ignore it until my friend Trevor noticed that the finger I had my US Army ring on was turning blue.

We went to the ER, it took the hospital almost an hour to cut through my ring, an about an hour later I was discharged with a diagnosis I have not yet heard.  "Mr. Costonis, while I hope I am wrong and admittedly have never seen it before, I believe you have RSD."  That will  sober up anyone in a hurry.

To get to my point, on that day, March 23, 1998 I had RSD in my upper right, today some 10 years later, I am full body with a concentration on my upper right - meaning it hits there first, then the pain moves around any GD place it wants.

I was sent to Texas Tech Medical Center to their special RSD Pain Clinic.  There I met a guy who pinched his pinky finger in a barn door and he couldnt walk.  I met another patient how had a perfectly good arm removed 7 years prior, yet his hand - that was removed - still hurt.

The only advice I can offer anyone with RSD is stay off neurontin, ask your doctor for Ametrptelyne.  do not get the dorsal column stimulator unless it is a last resort.  I have one and have had to have 5 surgeries as a result of broken wires etc.

The most important thing, AND ALL RSD SUFFERERS LISTEN UP!!!!!! the most important thing is keep positive, keep negativity - at all costs - out of your life.

The thing to remember is this;  RSD is Neurological, or psychophsiological.  YOU can effect it almost as much as your meds if not more.  

I lost use of my right arm shortly after my injury, and began to loose my right leg.  I fought the mf-er with all my might.  I walked the hospital for every day of the three weeks I was in Texas, I pushed and pushed.  

Today, yes indeed I live every day with pain, but I have my right arm back (85%) and have retained my right leg. I have about 10 minutes per day with out pain, and that is the first 10 minutes I am awake.  For me, the unusual day is a day without pain, those are the days I really worry.  

You must fight it.  Fight it like you would fight something that was going to hurt your kids!!!

My love and prayers for you and your family, please, BE STRONG AND FIGHT!!!!
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Avatar_n_tn
I have RSD in both feet and it has recently started up my legs and knees.  My feet and ankles stay so swollen, most days I can't wear shoes.  I  recently had a bladder lift and have had tremendous pain in my pelvic area ever since even though my surgery did excately what it was supposed to do. My insides are real red and swollen.  Now, I know the RSD has gone to my pelvic area.  This is so painful and absolutely miserable.  My quality of life was already slim and now it is nothing.  The only relief I get is to lay down and take the pressure off my bottom. My feet pain has increased tremendously.  I do have a pain pump and we are gradually turning it up hoping it will control most of the pain, but we have a long way to go. I have no life.RSD is the worst thing that could happen to a person. It is the most debilitating disease a person could have.  I pray for remission, but I don't know if there is such a thing.
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Avatar_f_tn
Yes I have CRPS TYPE 2 in both upper and lower extremities...I do physical training sitting in a hotel room right now...both feet propped up with a 5 mile walk coming up in an hour Or so...that's  the twisted nightmare of this disease...it comes then goes...and I have been there with ER Drs MANY MANY TIMES....no clue what I'm talking about...they look at me like I'm mad....then go look it up...I'm finding more and more that this is the norm...had to bring in literature to my own Dr of 15 yrs you are not alone...insane that a medical Dr would not have ever even heard of RSD let alone the new term C R P S type 1 & 2...appears only if they have had a loved one, colleague, Or personal experience with CRPS do they have any awareness of it...  
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Avatar_f_tn
I've had CRPS type 2 for eight yrs...started in my right hand spread to left...had 8 surgeries, Spinal Cord Simulator no relief...now all extremities...however, as I posted earlier...I am total believer...at least on my "good" days...endorphins are key...to alleviating...or at very least making MY flare ups a tiny bit more bearable...granted some days I am in such agony I can't move...but when I can...I push myself...to create those endorphins...the body's own painkiller...anyways wanted to ask you...I'm having the ketamine infusion...really wanted to go to Germany or Mexico have the comma but this is what I can do for now...have you heard of remissions my new Dr is well known and has promised I will have relief of some kind...hand hurting ttyl
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Avatar_f_tn
I was diagnosed with fibromyalgia in 98 then sent 2 a pain clinic where i was diagnosed with "possibly RSD" i asked the Dr wat it was & she said we'll worry about that later bcz i also have thoracic outlet syndrome (TOC) which required me to have surgery (1st on the R side in 04 then the L side in 05) to remove an extra or cervical rib (that i was born with) so they did a rib removal & resection because i lost the use of my right & left arms & hands. I needed help brushing teeth, getting dressed etc. during the 1st surgery they clipped my carotid artery & i dotted on the table from internal bleeding. They did save me but i had to have a blood transfusion. The 2nd surgery on the L side went better. After the surgeries i was diagnosed with TOC with "resultant" RSD in my upper & lower extremities! Needless to say I'm in a great deal of poussin constantly! But my latest complaint is I'm wondering if TOC & RSD can cause restless leg syndrome and/or peripheral artery disease bcz i recently I've been having severe pain in my thighs, knees & backs of my legs going down to my feet. It feels like i have a tourniquet tightening in my thighs blocking oxygen or watevr flows from my upper legs to my feet. Its very painful & scary & gets worse at night! Had anyone else experience this with RSF or TOC?  (Btw I've also had contact w/ER drs & nurse practitioners who don't know wat RSD or/& TOC is!)
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5930171_tn?1376889700
Hello there,
I have RSD as well.  My RSD started in the right foot.  I received mine from an allergic reaction to Cymbalta.  I woke up one morning to go to work and the skin was starting to fall completely off of the bottom of my right foot.  It then started in my hands and I had a severe case of thrush in my mouth.  I went to the doctors like you did and NOONE knew what RSD/CRPS was.  My right foot swelled up about three times it's normal size.  I was in a wheel chair for almost two years. I could not sleep in a bed I had to sleep in a recliner due to my inability to walk.  I know how you feel about the pain.  I am currently now able to walk.  I have been walking for about six months.  They say that I am in remission but I tell you what lately my ankles have been swelling,  I have gained about 60 pounds, my knees have been swelling as well as my calves.  I hurt so bad I want to cry but I have a doctor that does not believe in pain medication.  He only has me taking Oxytocin 10mg 1 every 12 hours.  I take Lyrica as well 150 mg three times a day but that is all.  I have been to a spine doctor that gave me three spinal blocks to try and ease the pain but the last one made things worse instead of better.  The RSD has also taken hold of my kidneys as well as my colon.  I feel that this disease can spread to the upper and lower extremities. I am pretty sure that I may have Fibro too.  I have never been diagnosed with it but as much nerve pain as I have I think that I may have it.  I was diagnosed with Degenerative Disc Disease, have had one back operation L-5 thru S-1 Microdysectomy. This disease is so horrible.  No one understands us and will NEVER understand unless they go thru the pain themselves.  I will keep you in prayer. Thanks for sharing your story.  Kneeslapper  
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5930171_tn?1376889700
Hello there,
I have RSD as well.  My RSD started in the right foot.  I received mine from an allergic reaction to Cymbalta.  I woke up one morning to go to work and the skin was starting to fall completely off of the bottom of my right foot.  It then started in my hands and I had a severe case of thrush in my mouth.  I went to the doctors like you did and NOONE knew what RSD/CRPS was.  My right foot swelled up about three times it's normal size.  I was in a wheel chair for almost two years. I could not sleep in a bed I had to sleep in a recliner due to my inability to walk.  I know how you feel about the pain.  I am currently now able to walk.  I have been walking for about six months.  They say that I am in remission but I tell you what lately my ankles have been swelling,  I have gained about 60 pounds, my knees have been swelling as well as my calves.  I hurt so bad I want to cry but I have a doctor that does not believe in pain medication.  He only has me taking Oxytocin 10mg 1 every 12 hours.  I take Lyrica as well 150 mg three times a day but that is all.  I have been to a spine doctor that gave me three spinal blocks to try and ease the pain but the last one made things worse instead of better.  The RSD has also taken hold of my kidneys as well as my colon.  I feel that this disease can spread to the upper and lower extremities. I am pretty sure that I may have Fibro too.  I have never been diagnosed with it but as much nerve pain as I have I think that I may have it.  I was diagnosed with Degenerative Disc Disease, have had one back operation L-5 thru S-1 Microdysectomy. This disease is so horrible.  No one understands us and will NEVER understand unless they go thru the pain themselves.  I will keep you in prayer. Thanks for sharing your story.  Kneeslapper  
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Avatar_f_tn
No, CRPS cannot spread from the arms to the legs because they are not connected by the same nerves. It can spread from arm to arm or leg to leg, but only if left untreated. I assume that you are on medication for the CRPS. The most common medication for CRPS is gabapentin which can cause swelling of the feet and legs and should be reported to a doctor immediately. Fibromyalgia can cause pain in both calves of the legs, but will not cause swelling.
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