Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-19-2017, 09:57 PM #1
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Default Loss of sensation

Seriously...is it possible to have both a loss of sensation and hyper sensitivity?? My body is totally crazy these days.

Every time I go to my pain doctor he takes a cold wipe and asks me if it feels different here, here, here, etc...where does the feeling change, is it colder here or here, etc. it always leaves me in pain but there are differences. I'm think it's the small fiber neuropathy vs the CRPS that he does this for but not sure. I always just kind of passed it off as one of those things I have to endure at my follow up appointments...at least he doesn't do the needle test every time because that one is even worse....but never really noticed a real world impact on my lift with regards to these tests...until THIS WEEK.

So I pulled a load of my daughter's laundry out of the washer, folded it, put it in her drawer on Monday. Tuesday I get angry yells from the husband as he's trying to dress our daughter in the morning because everything in the drawer is sopping wet! Say what?! I thought he was exaggerating but after he dressed her in the previous day's pants and went to work I pulled everything out of the drawer and spread it all out to air dry but thought he must be exaggerating because it didn't seem wet to me. Another load of clothes for her were in the washer and I pulled them out that night after she went to bed to fold them. They felt fine to me...but out of curiosity I help one up to my cheek and sure enough...it felt a little damp. I tossed it to my husband who says it's not a little damp...it's very WET. What?! I couldn't feel the wet AT ALL with either one of my hands...and only a little when I held it up to my cheek (why the washer/dryer isn't drying the clothes well is a whole other issue I guess).

But sure enough...I look closely at my hands and they are glowing red and within 30 minutes I have a HUGE flare up. Seriously?? My hands are reacting to cold that I can't even FEEL?! Days later my hands are still swollen and red. I don't know why...of all the weird issues I have...but this one really bothers me (not that it matters what bothers me...my body doesn't seem to care how I feel about it). I'm really just struggling with the whole not feeling things the right way. How am I supposed to avoid flare ups and triggers if I'm not able to feel these sensations? How do you know you're not feeling something if you can't feel it?? It's seriously trippy how I was holding these wet things and they didn't feel even remotely wet to me in my hands. It's not like my hands are numb...I could feel the things in my hands...but not that they were wet or cold.

Oh...and apparently I'm not allowed to put away my daughter's laundry anymore. Silver lining in this story??
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Old 10-20-2017, 12:39 PM #2
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Catra, you know I'm not a doctor but any dr that causes you any amount of pain just to see how much pain you're in doesn't sound right to me. My drs don't do any cold wipe or needle tests on me. Especially in my initial rsd site.

And if they tried I would drop them like a hot potato and find a new dr who knows that aggravating any rsd site can only cause the pain and spread to get worse. Also, cold and ice are never a good thing to apply to an rsd area. It can further damage the small fibers nerves and aggravate the rsd causing more flare ups.

At least this is what I have read, been told by my drs and have experienced when I saw an acupuncturist who kept applying needles to my original rsd site and my physical therapist who kept applying ice to my rsd wrist and caused more damage to my nerve fibers and wrist.

I don't see either of them anymore. I didn't know at the time that what they were doing was wrong until it was too late.

A drs oath is to first do no harm and it makes me very upset when I read about them causing undo pain to a patient. To me that is considered harm.

I hope you're not upset with me for telling you this. I am just worried about you and I have also had drs do unnecessary things to me causing my rsd to spread and flare up. These have been the drs who say they know what rsd is, when they really have no clue.

As for the numbness, I have numbness sometimes in my fingers and then it turns to pins and needles and then aching and burning pain. They swell, turn red with purple mottling, and it hurts to move them once the numbness wears off.

I just try to do the best I can with what I have. Every day is different for me with the pain. I rarely have numbness but it is annoying when I do.

I hope that whatever you decide to do this day forward, that you either try to educate your dr on rsd or find a new dr. I don't want to see you in any more pain. We all suffer enough pain with rsd.

And I know our spouses can get upset sometimes with us, but when mine starts getting upset when I can't do certain things, I calmly remind him that I have rsd and that I cannot always do simple things that most healthy people can do.

He just needs a gently reminder someday. We deserve to be heard and we deserve to take care of ourselves. As I said earlier, we are suffering enough.

I hope your pain and numbness subsides and am sending virtual prayers and hugs your way my friend.
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Old 10-20-2017, 01:27 PM #3
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I'm never upset with someone for sharing their opinion. I'm actually very happy with this doctor 99.9% of the time...he's the best one I've found so far and he does have a really good understanding of RSD. I believe he does these tests with the cold wipe (and maybe saying cold wipe isn't right...it's a wet wipe that feels cold) to test and document how far the SFN has progressed.

With it being a work comp injury...he makes sure to document, document, document and while this type of test is still subjective...it's documentation of the condition and the worsening of it over time. Having dealt with work comp many times...I know how important this documentation is. I finally won my Long Term Disability claim and it was in part due to these types of records and while the pain is awful...it's worth it for me to make sure everything is documented for work comp because the stress of dealing with insurance companies is too much for me and all it takes is one little paperwork error, something not written down or for them to say it's unsupported by objective testing or whatever to throw everything out of whack.

Pretty much everything about a doctor's visit causes me pain...but I feel like it's important that I cooperate with the doctors and do the best I can so that they can document what they need to an write up proper notes.

The husband...he needs a lot more reminders lately...I think it's just because this has gone on for SO long and he's just...well he's tired too. RSD is hard on everyone in the family...not just me...but I do get frustrated with him sometimes when he gives me a hard time about stuff completely beyond my control. Like putting away wet clothes because I couldn't feel they were wet...I'm still trying to wrap my head around that...lol.

Thanks as always for your support...it means a lot.
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Old 10-20-2017, 05:23 PM #4
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I understand how important the documentation is. Though I have never dealt with WC, I have dealt with SSDI. I was approved rather quickly the first time and then was required to do a full review again four years later. It is very stressful both times I totally agree.

And I did have a disability lawyer and multitude of drs helping confirm my diagnosis of rsd (and anxiety and depression and fibromyalgia and endometriosis and scoliosis). But my concern for you is that you are being put through pain from your dr in order for him to document things.

My dr gives me a three page form to fill out every three months and then gives me a diagram to note where my pain is and what kind of pain and sensations I'm having. Plus he sees the physical symptoms I have and documents them at each visit as well.

When it's time for my reviews that is what he provides them and they have so far (knock on wood) that was enough. (I also document all my dr visits and get my medical records in order for each review.)

Maybe your dr could try that form of documentation for your disability insurance. It's a lot less painful and still could have the same success. Maybe I'm wrong and it won't but I would at least ask him about it. And maybe check with a disability and WC lawyer for their opinions.

I know my dr has tried to get me to do the SCS and DRG several times, but because the meds seem to be helping and because my neurologist felt that it could cause more problems then not (i.e. infections and paralysis) that I have put it on the back burner for now.

If there ever came a time when I was told that I either had to do those procedures or be at risk of losing my benefits, I would still tell them no and find another dr and disability lawyer regarding this situation. Besides the fact that the recovery process of these procedures is painful, they could cause more spread to my rsd ridden body.

I personally don't think it's right for anyone to subject someone who is suffering every day with the worst chronic pain there is (like you and me) to more pain.

But maybe I'm missing something. This is just my opinion. There is no right or wrong. We all have to do what is right for us. But I still don't think that anybody should put a person who is in constant horrific pain through more pain. (Especially a doctor).

I hope and pray that the right answer for you will come and it will be to not be put in more pain in order to get your benefits approved. I don't believe anyone should have to go through that. It just seems so inhumane to me. And you have been through so much pain as it is. We all have.

You have been a good friend to me here on NT and I only mean to help because I don't want to see you hurting anymore. Hoping you find some peace with your pain and your dealings with drs, wc and disability. I am so glad you were approved for disability insurance.

As for the spouses, I know it's hard on them too, but sometimes mine at least just needs some gentle reminders of my limitations due to my rsd. I know they still love us, they just get tired of the constant battle we fight just like we do.

One day at a time. We will get through this together. And hope for a cure sooner rather then later for this horrid disease.

P.S. I also wanted to mention that if a doctor ever tells me that the complications of any procedure are rare, I tell them that rsd/crps is rare but I got that didn't I? I'm not saying that I will never try a certain procedure. But I do think long and hard before doing so. I weigh the pros and cons, consult my drs and my family and my own gut. And then I make the best decision for me by me. I am the one that makes the call as to whether or not to go ahead with a risky procedure. And any procedure is risky in my opinion when you have rsd. Like I said it's just my opinion. Wishing you well my friend. Remember to take care of yourself. You are worth it!
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Last edited by RSD ME; 10-21-2017 at 01:17 PM. Reason: Added a P.S.
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Old 10-20-2017, 10:42 PM #5
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I am on WC and I've never had any kind of that testing done by my pain management doctors. He always asks to see my foot and leg (to observe any physical changes and check for problems) and asks how/where the pain is. He NEVER touched it until I was able to handle touch. Every once in a while he would do the very small light touching to compare the affected to the unaffected side. But there is NO reason to do it at every appointment. Your condition is documented. WC does not require it to be re-documented at every appointment, nor does the doc have to do a physical check at every appointment.

Now i don't know about the SFN, but if this testing is causing the CRPS to worsen, then that testing needs to stop or be changed or something. And I think you need to report to him this issue with the loss of sensation. Not feeling wetness is a pretty huge change in sensation. Is this Dr. aware of the amount of pain his examination causes and for how long?

My podiatrist has done it more frequently and I don't like it, but he is testing something different, not the CRPS. He is checking for possible Tarsal tunnel syndrome and comparing the sensation between the two feet. The one time he grasped my foot I jumped and yelled. He never did that again. I don't like him and if there was another podiatrist in my WC network nearby I'd dump him in a hot minute. He touches my affected foot far too often, all while warning his assistants to be careful of it because of the CRPS. WTF?

I'm glad you like him, and yes documentation is everything, but so is appropriate treatment. And touching a highly sensitized CRPS limb is contraindicated. Have they given you any PT to work on desensitization?
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Old 10-22-2017, 11:19 AM #6
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I have done a lot of therapy to work on desensitization and it's the only reason I can wear clothes at this point. I can usually tolerate the touches if I know they re coming but cold always flares me up badly regardless. I will discuss with him the additional pain caused by the cold wipe...but I think he's been testing to check for this very thing that happened...that I can't FEEL the wet at all.

I don't know... I probably am just so worried about WC because they deny everything and if anything pops up like I refused to be examined then I feel like it would be even worse. My experience has been so bad with them that I am willing to subject myself to torture just to make sure I get treatment reimbursed at some point. It sucks...dont know what else to do.

I an actually really optimistic about the DRG treatment and this is coming from someone who decided the traditional SCS is not for me. He wanted me to do the traditional SCS when they denied DRG a year ago and I said no because I'm not comfortable with that one a d the results. It's always a risk and I've reacted badly to blocks and epidural so I'm not kidding myself thinking this will be all peachy...but I've reached a point where the risks of the DRG are worth it to me...meaning at it's best my pain is at an 8/10 and it doesn't take much to flare and completely knock me out.
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Old 10-22-2017, 07:27 PM #7
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One of the reasons you should apply for SSDI is because you might decide that dealing with WC is no longer worth the stress and decide to settle. You or your attorney can submit the medical set aside amount to Medicare and if they approve it, then after it is depleted on legitimate medical expenses related to your WC injury, then Medicare can be billed.

Even while you have an open case if WC denies a med or a procedure you are allowed to then submit to Medicare.
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Old 10-23-2017, 09:48 AM #8
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Oh yes, please apply to SSDI, because if/when WC stops paying you have that to fall back on. And depending on what WC is paying you, they might even pay a little on top of that. With enough documentation you may not even have to see one of the SSDI doctors. I just sent them my AME report and didn't have to see their medical doc (which was good because they were going to send me to an orthapedist, really???). I did go see their psych, but that was fine. I qualified on the first try.
RSD/CRPS is not on the "list" that they have, but they do have info on it. And if your doc also includes info about it on their reports in the AME/IME more the better. All I did was drown them in paperwork. Every single thing I had from WC they got. And then when I was approved, they dated it back to the original date of the injury. Which means my coverage date is then based on 6 months after that. So I got back pay (which for me wasn't much due to the amt. of my WC) from that date.
AND my Medicare time will base on that too. 2 years from the date they start covering you you can get Medicare.
Meanwhile, what the doc is doing is not the proper way to desensitize you, which I'm sure you know if you've already done desensitization. And you have the right to tell the doc not to do something, WC has no say in that, it is your body. If cold flares you up, then maybe he can warm up the wipes before touching with the wet wipe (if he's testing your ability to sense wet touches). But really, if it is causing HUGE flares, then it is causing more harm than good. Because it could worsen the CRPS.
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Old 10-23-2017, 01:31 PM #9
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Quote:
Originally Posted by LIT LOVE View Post
One of the reasons you should apply for SSDI is because you might decide that dealing with WC is no longer worth the stress and decide to settle. You or your attorney can submit the medical set aside amount to Medicare and if they approve it, then after it is depleted on legitimate medical expenses related to your WC injury, then Medicare can be billed.

Even while you have an open case if WC denies a med or a procedure you are allowed to then submit to Medicare.
Good advice. Today I was denied aqua PT, because I supposedly "exhausted what is allotted." CRPS is lifelong, so this is somewhat shocking to me. I am on Medicare due to my age, so the prescription will be submitted to it along with my supplemental insurance.
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Old 10-23-2017, 10:57 PM #10
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I know it may sound silly to those who have gone through the process...but I've been waiting to apply for SSD because I knew that once I was approved for LTD, LTD pays for advocates to help me apply for it and pays for attorneys if I am denied and it will make the whole process so much easier for me. Just...with everything else and all the other stress I just could not even think about applying for SSD. I actually started that process today. May sound crazy...but mentally this time last year I was at the end of my rope trying to deal with everything and I had to break it down into what I could deal with and what I couldn't. SSD was just that one extra thing I couldn't take dealing with.

And WC right now is paying NOTHING. Not TTD, no medical care, nothing. It's SO complicated and it does NOT work like it should. I am still employed by my employer and have had health insurance through them. I went a whole year with NO PAY because LTD denied me too. I appealed that and got paid back pay and am now getting ongoing pay but it took a year to get that. My health insurance was paying for everything...but denying the DRG treatment. I recently switched over to my husband's insurance and they so far seem to be approving the DRG (I should have heard by now if it was denied). It has been a FIGHT every step of the way and according to my attorney, my WC case could literally be in the courts for YEARS (like 5 or more...no joke...all the while I get nothing) because of the crap work comp is pulling...so it will be a long time before that is all sorted out...they don't even want to settle unless I resign from my job which I'm not willing to do yet because I still am hoping to get back there after this DRG treatment. WC is basically trying to use my case to write new law...so it is something that can and will be appealed regardless of what happens on the initial judgement.

I want to say that I REALLY appreciate everyone's advice. You guys are the best...and I always appreciate the honesty of members on this board. So I hope nothing I said came across as argumentative...just sharing some of the background as to why I have put some stuff off and what I've been going through...and this is just scratching the surface of the insanity. But I always appreciate everyone's thoughts and I always keep these things in mind when making decisions.
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