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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 06-13-2012, 07:03 AM   #1
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Swelling of Foot with RSD

Its been awhile since I've signed on here. My RSD has been in my right ankle spreading up to above my knee. I've had RSD for 8 years now. Last year I experienced a new kind of pain when my ankle/foot swelled up after no apparent reason. I've always been extremely cautious as to the way I move as not to cause any more aggreviation to the area. My walking has always been the same, the movements have never faultered and it is virtually impossible for me to do the normal everyday tasks. Well, like I said before last year my ankle/foot swelled up. After seeing my PM he placed me on Mobic (which is a arthritic med) and after awhile it seemed to help. Now fast forward almost one year later and the ankle/foot has swollen up again. It looks like my foot is a puff fish! The redness and the pain is horrible.

A week ago my PM decided that I had increased renal functions and decided that the Mobic needed to be stopped and bloodwork performed. Then I had another dr place me on a beta blocker and stop a water pill I had been on for a year. When I contacted my PM if I could start the Mobic up he said "NO" and he wouldn't do anything for me until I got the bloodwork done. Geez! I have to depend on the lab/WC/Case Worker to tell me when I can go and it can be at least a couple of months till I get the go ahead. In the meantime I lay here suffering in agony.

My Poor wife has tried her best to get me some relief either by using a diabetic holistic spray which stinks up the house. She's tried other types of joint balms and ointments too. None have been successful in even to offer any relief if not a fraction. I'm back to using crutches instead of my cane. What to do?

Has anyone had any flair ups? If so, what have you done to help cause I sure would like to find something that could help me. I appreciate all thoughts........

Ben

 
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Old 07-01-2012, 02:07 PM   #2
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Re: Swelling of Foot with RSD

Hi, Ben.

I'm so sorry to hear about your recent painful flair-ups. I was diagnosed with RSD in left foot/lower leg about a year ago, but had such an aggressive case, that the disease took off from stage 1 to stage 3 in a matter of three months, which was when I was diagnosed. By that time, my food was purple and swollen to almost four times its size and felt like it was going to pop. Unfortunately, by that time, it was so far gone that it didn't respond to any treatment (including spinal blocks) except spinal cord stimulator. I'm non-weightbearing/non-physical therapy for at least another year to try to stem the spread.

I tell you this part of my story only because it relates to my suggestion to you. It pains me to even suggest this to you (and I don't know what stage your RSD was arrested at or what treatments you've had), but is it possible that this sudden swelling could be an indication that the RSD is progressing? Maybe that's why your PM is waiting on renal blood tests?

In any case, for this new pain that you're suffering, my PM recommended lidocain patches (prescription) or maybe try lidocain lotion? It won't help with the pressure-like pain, but it's supposed to act to numb the skin pain a bit. I haven't been able to use them yet due to the extreme skin pain and sensitivity on my foot, but plan to as soon as my foot gets to the point where I can stand it. But maybe it will work for you?

Good luck to you, Ben. I literally feel your pain. My thoughts are with you.

Last edited by Hushie; 07-01-2012 at 03:43 PM.

 
Old 07-01-2012, 05:51 PM   #3
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Re: Swelling of Foot with RSD

Thank you so much for responding to my post. I've had my RSD for 8 years now and haven't really had a problem till last year when my foot swelled. The unfortunate part of this whole ordeal is that if you have a doctor "one" could only wish that he would pay attention to his patient. I've not tried Lidocaine patches, but I have in the past tried the Fentinol (sp?) patches. I had a very bad side effect that my doc didn't believe and it was a fight to have him stop them. So he isn't so fast to prescribe meds, but he is very fast to stop a good thing that works.

It's been three weeks since my swelling started and in the interim of this I had stopped a water/high blood pressure pill. I believe now after my own observation and diagnosis that t his has been the root of my entire problem. Now it is trying to get this quack to start me back on it, but he flatly refuses to see me and speak to me. I have an appointment with him in another couple of months, but at this point it really is mute. I did go back on the pill a few days ago and the swelling actually went down, so that is why I equate everything to that pill.

I used to believe in this board a few years ago when I needed help and guidance when no other person could assist me. So I'm very grateful for your input. I was actually a big influence when it came to the SCS trial and implantation. I gave details when no one else could offer when it came to what to expect. So I found it very funny when I hadn't gotten a response in all this time. So sad, but wait till someone on here experiences this same problem....they will seek out this thread and possibly comment. I'm very sorry if I sound so bitter. Please note it isn't directed at you. It is solely directed at the rest of the people who read this thread...all over 300 people who didn't care to comment. Isn't that aweful?

So with no other comment to express I do thank you. At this moment in time I am still in the middle of a fight with a doctor and trying my hardest to either switch or get alternative medical treatment. Which ever one comes first then I will jump at it. I wish you well and hope you will have a pain free day soon.

 
Old 07-01-2012, 10:41 PM   #4
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Re: Swelling of Foot with RSD

Hi there -- I read your thread, but I didn't have any ideas to help you. I can tell you what I'm taking and doing, but I don't know if that info is helpful to you. I feel really fortunate that my case was caught early, and I have been aggressively seeking treatment. I don't have any experience with Mobic.

SO -- right now, I am on 3600 mg neurontin, tramadol, and 25 mg nortriptyline, to increase to 75 mg. The nortriptyline is intended to help your brain ignore the pain, so that you can do more activities and your nervous system can receive positive reinforcement. I also have Lidoderm patches, which might help with your sleeping, if you can tolerate. If I have a bad day, I put a patch on my toe to help me sleep at night. I go in for my second nerve block in two days.

I am also taking 3 grams of Vitamin C and algae/fish oil. Stanford also recommened alpha lipoic acid and acetyl-L carnitine, but one of those gives me a bad headache. With the supplements, I figured they could be no worse than the pharma products. However, if you are having renal issues, I would clear any supplements with your doctor.

 
Old 07-02-2012, 07:16 AM   #5
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Re: Swelling of Foot with RSD

Thank you for your input. Wow, I can't believe the amount of meds qu are taking. Unfortunely, my doc made such an issue about my kidneys n having blood work done that he didn't care to review then discuss the final results. In the end with many irritating calls to his office his "girl" informed me that I could start my meds again. Of course no response about the blood work. Finally I got a result a quick "alls fine". This is what I mean about seeking alternative treatment and trying to get a new doc.

My wife has thought about different vitamins and supplementals that could be mixed in to help me. I just can't stand taking pills in the first place. Maybe I need to got over with it and just take the extra stuff. It's just so hard, but she does say men make the worst patients. Ok, ok. LOL.

Once again I do appreciate your thoughts. Thanks

 
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Old 07-02-2012, 11:46 AM   #6
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Re: Swelling of Foot with RSD

You mentioned that you have been a big contributor to this board and I see that. I am new here, and not officially diagnosed. I have read so much through past posts, and yes, you have contributed so much. Thank you. I am sorry you haven't gotten the input that you were seeking and deserved. You have certainly answered some questions that I have had.

My PT did something interesting with me today. I see 2 different PTs and they each have a little different way of dealing with me. This one usually will massage my knee area since that is the point of original pain. It's been very tender to say the least. Today he massaged the opposite knee. He says it works alot of times with RSD patients, something in the wiring of the brain. I can tell you honestly that even though he was working the other leg, my affected leg felt relief for a short time. Strange stuff the way our brains are wired. My other PT says she has a RSD patient that she absolutely cannot touch her affected foot, but she can massage her other one and it helps. I am going to try this at home and see if I can notice a difference in pain.

 
Old 07-02-2012, 05:12 PM   #7
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Re: Swelling of Foot with RSD

Ben,

Please don't apologize for feeling (or sounding) bitter, and I'm so sorry that you felt abandoned by the board. I just joined yesterday specifically to respond to your question (although I'm afraid I wasn't much help).

I, too, had a bad reaction to the Fentanyl patches, but then my PM told me that I could cut the patches into smaller pieces for a lower dose. I'm supposed to use 50 mcg patches, but I use a 1/4 piece of it when I have to, and this eliminated any side effects. Like you, I'm not a fan of drugs/pills, but will begin a 9-med cocktail next month. We'll see how that goes.

Question, though. Is this your PM that is being problematic or your general doc? If it's your PM, has your doc treated RSD patients before?

Thank you for the warm thoughts, and I send them back to you.

 
Old 07-02-2012, 10:55 PM   #8
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Re: Swelling of Foot with RSD

In addition to touching the opposite foot, you could also try mirror-box therapy. There are some good, free videos on the web. Mirror-box therapy was originally developed for amputees and stroke victims. There is anecdotal evidence that it helps those with severe CRPS. Essentially, you move the unaffected limb in a mirror positioned so that it appears to be the affected limb. Again, the tricking the brain thing, reinforcing that your affected limb is in no direct danger.

My PT thought my case warranted more direct desensitization, so I have no feedback on the mirror-box. But, it's close to free and doesn't involve taking any pills! (I sometimes don't know whether the information I have is redundant or so basic as not to be helpful to others on the board. I know others have been dealing with this condition for longer than I have, but I have been trying to learn as much as possible. Please excuse any repetitive information from me!)

 
Old 07-03-2012, 07:02 AM   #9
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Re: Swelling of Foot with RSD

I feel the same way about any info I have. I have read about the mirror box therapy. I do find it interesting.

I told my PT yesterday that it's so hard to know what information is correct and what is not because there is just so much of it out there. I think listening to people who are actually dealing with this is very helpful. I am trying not to read TOO much because I definitely don't want to project symptoms onto myself that aren't really there. What I do know is I am having alot of pain that I never had before and something has to explain it.

I have no idea what the PM that I will eventually (hopefully) see believes about RSD. I know that what started just around my knee is now up my thigh and down my leg. I'm really pretty scared that by the time WC gets around to letting me go if this is RSD it could be spread farther and this doctor won't believe it spreads, or they will just think I'm crazy completely.

So for now I am pushing it and using my knee and leg. I don't want to lose the use of my limb. Although if the pain gets too bad I stop and rest. They are telling me that the things that bother it the most are the things I need to expose it to for desensitization, especially since if this is RSD it's in it's early stages.

I appreciate this board so much. I used to go to the fibromyalgia board quite often. What I was dealing with with fibro is nothing in comparison to the pain I have felt for this short time with my leg.

 
Old 07-03-2012, 10:49 PM   #10
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Re: Swelling of Foot with RSD

Quote:
Originally Posted by Scrufysdad View Post
Its been awhile since I've signed on here. My RSD has been in my right ankle spreading up to above my knee. I've had RSD for 8 years now. Last year I experienced a new kind of pain when my ankle/foot swelled up after no apparent reason. I've always been extremely cautious as to the way I move as not to cause any more aggreviation to the area. My walking has always been the same, the movements have never faultered and it is virtually impossible for me to do the normal everyday tasks. Well, like I said before last year my ankle/foot swelled up. After seeing my PM he placed me on Mobic (which is a arthritic med) and after awhile it seemed to help. Now fast forward almost one year later and the ankle/foot has swollen up again. It looks like my foot is a puff fish! The redness and the pain is horrible.

A week ago my PM decided that I had increased renal functions and decided that the Mobic needed to be stopped and bloodwork performed. Then I had another dr place me on a beta blocker and stop a water pill I had been on for a year. When I contacted my PM if I could start the Mobic up he said "NO" and he wouldn't do anything for me until I got the bloodwork done. Geez! I have to depend on the lab/WC/Case Worker to tell me when I can go and it can be at least a couple of months till I get the go ahead. In the meantime I lay here suffering in agony.

My Poor wife has tried her best to get me some relief either by using a diabetic holistic spray which stinks up the house. She's tried other types of joint balms and ointments too. None have been successful in even to offer any relief if not a fraction. I'm back to using crutches instead of my cane. What to do?

Has anyone had any flair ups? If so, what have you done to help cause I sure would like to find something that could help me. I appreciate all thoughts........

Ben
how sit going my friend. I see you are having issues with comp and swelling .. I feel your pain. as far as ways to deal with swelling . one try laying down with your feet levitated for a full day (annoying Iknow) also a room temperature foot soak with epsom salt. . two non drug non invasive treatments. mind you it helps not gets rid of the swelling. believe it or not my swelling got so bad i decided to do something really "stupid" and squeeze the liquid out of my feet and legs.... ouch is an understatement and it only worked for like 15 minutes. my best result is lots of liquids and feet up as much as possible. now dealing with comp. what can I say its all about calling the dr,s and your attorney . (if you don't have an attorney for comp its always best to get one) and if your dr is good he/she will call your comp carrier just as much as you call your atty. .. I hope this helps a little good luck

 
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