Looking for advice on walking with RSD

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sox167
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 8/30/2008 6:00 PM (GMT -7)   
Hello, I am looking for some advice about returning to weight-bearing with RSD. about 3.5 months ago I fell and sprained my foot and ankle in several places, most importantly the lisfranc joint (middle of the foot) which resulted in 8 weeks of being in a cast. The RSD began before the casting with strange constant tingling sensations in my toes, and became unbearable after 8 weeks when I was (luckily) correctly diagnosed and sent for physical therapy. After a month of therapy I am finally starting weight-bearing, but it is incredibly difficult. I've been trying to progress towards walking for 2.5 weeks now.

I am wondering if anyone has advice about walking with RSD, because my foot becomes burning hot and purple after 5 seconds of doing anything... I'm trying to find a happy medium between not enough progress and too much pain. It's hard because I am 23 and used to being a very active person, and it is so frustrating to not see any progress when I work so hard...

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/30/2008 9:06 PM (GMT -7)   
Dear Sox,
Welcome to the HW forum. I am not a doctor, nor are we here to offer medical advice. So what I would say to you is to make sure you are working with someone who specializes in RSD (now called Chronic Regional Pain Syndrome - CRPS) and follow their advice closely. I didn't realize RSD could be diagnosed so quickly after an injury, BUT I do know that an injury that does not heal properly can lead to RSD. If you've already been diagnosed by a specialist, then I would ask them about the walking, and also tell them about the heat and color change to your foot. I think those are symptoms of RSD, and it CAN worsen. So I'd suggest talking with your RSD doc ASAP.

Good luck!
PaLady

crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted 8/30/2008 11:59 PM (GMT -7)   

Hi sox167,

I have had rsd in my foot for over 3 years now. I have had no less than 13 surgerys and is still am un able to walk more than 5 min without it turning bright purple with burning,stabing pains. Did the PT work for you? Did you notice a good amount of reduction in pain now that you have had pt for some time now? I cannot for the life of me get this rsd under control. It has taken over my entire life with relentlesness.

I have just stated pt umoungst other things and it is absolutely unbearable when she turns my foot and pushes it and the on top of it all she starts to rub it intensly all over and then puts a hot towell on it for 10 mins. For days after she did that I am in hell with the uncontrolable pain that had come from it. It was my first pt appt so i hope the next ones will be better than the first.

I have absolutly zero life from it and I have tried almost every med out there. Most of the long term ones make me sick so im back on my dilaudid. I wish the oc worked but just too dizzy and headache .

Please let me know if you dont mind what meds work for you to try to tame this life living hell we live in, I would love to hear it.

Thanks for you post, I have been looking for some rsd or what its called now is crps patient to get some ideas from.

                            thanks again

                                            mike


sox167
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 8/31/2008 6:31 AM (GMT -7)   
Hi Mike,

I'm so sorry to hear that you have had this for 3 years. I was extremely lucky to have seen an orthopedic doctor who recognized the symptoms and diagnosed me early. It was pretty obvious something was really wrong when they were taking off my cast, the vibration of the cast cutter was just about the most painful thing I have ever experienced.

The good news is that physical therapy really does work. I would look around your area and find a place that does physical therapy that specializes in treating RSD, it is very important that you work with someone who understands it and has helped treat it before!! The physical therapist I work with has helped many patients with RSD and understands what I'm going through. They also have special equipment which is important. They have a machine that I would put my foot into and it blows around this dust (I think it's corn husk dust) and they can adjust the temperature. At first this was so uncomfortable that I could only do a few minutes, but after a few weeks I was actually becoming desensitized and I could keep my foot in for up to 8 minutes and at a warmer temperature.

I spoke with an RSD specialist a few weeks ago who suggested other methods of treatment that he has seen work in his patients. One of the things he suggested was hypnosis or a pain block, some way of completely stopping the pain to give your nerves a jolt back into reality. He also said if you can find a massage therapist who works on RSD patients, they can help work on pressure points.

As for pain, I can actually say mine has gotten a LOT better. I was taking Ibuprofen to reduce swelling, Ultram (tramadol) during the day, and Darvocet at night. The Ultram gave me migraines at first, so I alternated with Darvocet and they went away. I also took Percocet once in awhile when I just couldn't take any more. Now I am down to Ibuprofen and one Ultram at night. One note about the Ultram, it affects your mood (in a good way) but when I reduced the dose, I really noticed the change and felt pretty depressed for about a week.

So now I'm just still trying to get my life back, †rying to get some muscle back in my leg, trying to put some weight on my foot, but it's so hard because I don't wan't it to get any worse...

crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted 8/31/2008 10:07 AM (GMT -7)   

Hi sox167,

Thats great how quickly you were diagnosed with rsd. I know that the earlier you start to rehab the better chances you are to get rid of it and the better chances of it not progressing. I have had every kind of block and procedure including a spinal cord stimulator to get mine under control, but it just has a mind of it's own. I will keep doing the pt although I did have it done 2 years ago, but the therapist said it was'nt worth his or my time because I was'nt getting any progress out of it. That tells me now how ignorant some therapists can be.

Anyway I am going to a good pain clinic now and hope to get some kind of relief from them. Thanks for the info I really do appreciate it. Good luck with your recovery and thank goodness for your quick diagnosis, I would'nt wish anyone the road I have gone thru!

  Hope everyone has a pain free day!

                          kind regards,

                                    mike


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 8/31/2008 4:10 PM (GMT -7)   

Hi, im sorry you are dealing with this

I had a major injury to the left foot from a lawnmower accident back in 1978 or so. I had several compound fractures, and complete reconstruction of the foot. I lost one toe to gangreen.  I had pain over the years but noting that was to horrible. 8 or so yrs ago, i was dx w/ RSD after having severe pain and could not walk on the foot.  I had to use a wheelchair for a few months as just putting my foot on the ground hurt beyond words.  I then started seeing my pain management specialist. He started by putting me on pain meds and then added nurention (sp). After the nurenton did not work, i stopped it. We then started the lumbar sympathetic blocks (spinal blocks). In the beginning, they worked amazing. I got them in a set of 3. So, one block every other week till i did 3 blocks.  I would get the set of 3 twice a yr. It is what got me up and walking. PT did not, pain meds did not.

After all the yrs of blocks, i am starting to get used to it, and am needing blocks more often. They have started to add Ketmine to the IV when i get my blocks now (supposedly, it is suppose to help rsd?)  My PM tries to hold me off as long as possible but is good about letting me get them when i need them.

I can say that my foot is mostly purple all the time now. Sometimes it goes blue. We have added lyrica which is really suppose to be having very good results w/ rsd, but i have not taken it long enough to comment. Anyways, i just wanted to tell u about my experience w/ the blocks. Some doc won't do them and some want to do only procedures. I seem to have found a happy medium.  Good luck


2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 8/31/2008 4:14 PM (GMT -7)   
PS, i ment to mention that my doctors all told me that i had to MOVE IT OR LOSE IT. The less u walk on your foot, the more the rsd will progress. (tho that is not to say that it won't progress if u do walk on it). So, even if u have to walk w/ a walker, cane, crutches, get walking! For me, i have gotten to the point of being able to physically deal w/ the level of my pain (most days a 6-7, bad day a 10 for sure). But even on my 10 days, i still walk on it. I sorta ignore the purple as when i get off it , some color returns, but it turns purple/blue every time it put it down....
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted 8/31/2008 10:34 PM (GMT -7)   

Hi Shannon1,

it seems the thing a while back was nuerontin,but as you said everyone stops taking that. The lyrica I have been taking for about 2 and a half years along with cymbalta that they claim has 75% nerve help and 25% depression help. I also take dilaudid for the pain,tizanadine for my muscle spasms and ambien cr to try to get some sleep ONCE in a while.

I have had about 14 to 15 simpethetic nerve blocks with no positive results and also straight ketamine infusions, probably 4 or so and then they just started to make me sick without any benefits. Then my pain med doctor tried a spinal cord stimulator that was a complete disaster. Got it adjusted several different times and all it did was shock my ass and my foot.He did use the one that has 12 leads up and down my back. I got that removed as soon as possible and can still feel the spce where they inplanted it.

After all these nightmares I was introduced to a nerve specialist and within 2 months I had 3 perrenial nerves cut out of the bottom of my leg to hope stop the agony shooting into my foot with no relief from it at all except increasing the pain. Not to mention all the needle procedures I have had trying to burn the nerves and the trying to freeze the nerves, with all the action my foot has gone thru my new pain clinic said HOLD OFF all these surgeries and start to rethink and go slower while considering if any other types of actions.

I tell them everyday I walk around my house and yard with my cane and they told me that was not the type of actions they wanted me to be doing. More like heavier types of PT and other things that I havent started yet. I also forgot to tell you that 2 years previous I had to have my big toe screwed into my foot because of crystalizing and decaying bone stucter in that area so it really hurts more when they start really rubbing my foot and hit the screw area.

Anyway the only thing I do to help me walk or even do anything for more than 5-10 min is use my pain meds to my advantage by timing them when my pain will be the worst. otherwise I have no other help besides my lying flat on the bed with my foot elevated and my heat blanket set on low and just suck up the pain until (god help me) it settles down alittle bit so I can breath again.
Sorry its so negetive, but until something comes along, this is the way it is. Thank goodness football season is here!
 
If I hear or do anything helpful I will certinly let everyone know asap. Until then Its nice to talk to someone that has somthing in common, even if it sucks!!!! shakehead
 
Hope Everyone Has A Pain Free Day!
                  kind regards,
                           mike

shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 9/1/2008 1:35 PM (GMT -7)   
Hi crps,

Im so sorry to hear what a horrible time you have been having with this. It def. sounds like yours is in a much worse state than mine.

When my pain first began and i could not walk at all, i was severly depressed. Newly married, planning a family, ect. Thankfully for me, i have seen quite a bit of relief. I am able to walk most of the day, tho i do take alot of breaks and never stand w/o walking longer than a few minutes. that is when it hurts the most (just standing w/o moving). I take percocet everyday of my life, for the last 8 yrs, as nothing else works for me. We have tried to get off it and go to a longer acting med (opana) and i got sick from it....

i don't know how u did ketimine infusions! Did you get high from them while u were doing them??? The first time they added it to my IV during the block, i hallusinated big time, thought the doctors were trying to kill me, apparently put up a nice fight, and then took a LONG time to come out of the anesthiea. I didn't allow them to use it on me again for about a year. How anyone can take that as a street drug, i will never know! Anyways, they did start adding it again, but in a much lower dose since i seemed to be seseptable to it. LOL

For me now, i am terrified of losing the use of my foot competely. I have two young children and NOT walking is NOT an option for me!!!! LOL I know i will never be able to have any procedures that deal w/ the actual foot as warned by my ortho who did the reconstruction back in 78. I will not let anyone touch the foot. My PM doc is now talking about some sort of freezing of the nerve in the back that they do the blocks..theroy would be to get longer relief??? im not sold yet, so i hold off on that....

I have heard of alot of people having issues w/ the stimulator and pain pumps, so i have chosen not to go there either. Im so sorry your having trouble even w/ it out!!!!

anyways, just wanted to say that i hope u do find something that brings relief for you! what a sucky way to live our lives, huh!

well, enjoy ur foot ball games! lol shannon
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted 9/1/2008 9:23 PM (GMT -7)   

Hi Shannon,

Ya I did to get sick off of opana and oxcycntns too so they cant be an option. The ketemine is wierd, at first the infusion took five and a half hours and wasnt too bad, but I wanted to speed up the infusion to 4 hours and I did get some wierd head games and then the last one was 4 and a half hours and I decided that they werent doing nothing besideds makinf me loopy for a while so I stopped. Yes beaware of the quick doctor who wants to do the scs. Its definatly NOT for everyone. The pump also scares me alot.

Thanks for the post, I apreciate the chat and good luck with what you have going on.

                Hope Everyone Has A Pain Free Day!!

                                       kind regards,

                                                  mike

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