I was wondering if anyone knew of a list of the less obvious symptoms/results of CRPS? I've been having some weird problems and wondered how many of them could be linked:

1. My sleep problems - insomnia, LOTS of sleep paralysis (with accompanying symptoms, see the sleep and sex thread), daytime tiredness that sometimes means I fall asleep at inappropriate times. A lot of this could be written off as a more general effect of pain but I wondered if there were ANS links.

2. Vertigo and fainting. I've been fainting, or feeling faint, quite a lot. At first I put it down to the pain as I have fainted from that, for example about a fortnight ago I put my foot on a stair to walk up them, had severe flashing pain through my buttock and back and fainted on the stairs (I'm probably the only person who can fall UP the stairs lol). I've had episodes of vertigo that the GP put down to labrynthitis in the past but which still go on now and come hand in hand with some episodes of fainting. I fainted last night and it wasn't from pain (although I am in a flare). I often feel separated/distanced from the real world, and this comes along with the vertigo - like I'm looking at the world from inside a glass box.

3. The memory/cognitive issues. Again I put this down to lack of sleep, pain and at first medications. I stumble for words, get slurred speech, forget things that aren't even trivial and should be easy to remember. My concentration is poor.

4. "Panic attacks" - I've suffered genuine panic attacks in the past related to genuine fears/issues (eg. on returning home when we were being targeted by severe antisocial behaviour and assaults on our kids at our previous address) and this is different. Previously I was on beta blockers for these "genuine" panic attacks and for migraines (another issue), but I am off them now. Seemingly no reason for these episodes. Heart races, sweats, anxiousness and restlessness. Happens mostly, in fact nearly every time, through flares. I just want to leap up and move. Can't sit still. Get frustrated easily and lash out verbally sometimes.

I wondered if there was anything else along these lines that others are getting and whether any of the above is something you guys can relate to? If so, how do you deal with it and has your doctor recognised it as part of your "condition"? Are there any potential treatments?

Hi Kathy!
I have not heard of a list of symptoms/results from RSD/CRPS, but would be curious to see it if there is one.

I have had many of your same problems. Sleep, or lack of, is a huge problem with me. I have a very difficult time falling asleep and/or staying asleep. I toss and turn soooo much Wake up too early...ugh!

I have vertigo and faint feeling at times, but not as much as you. I do come from a family of fainters, so that is kinda in my genes. Memory and cognitive issues...most definitely!! I definitely chalk this up to RSD/CRPS because it has worsened as my condition has. My husband has commented on that, I was never like this before! I have only had one or two real panic attacks and they were pretty recent. Migraines....well I have had them since I was a kid but they have definitely worsened over the years!

I additionally have increased allergies, gluten intolerance, gastroparesis, vision issues...very frustrating!

Nanc

Hi Kathy

I have been having some of the problems you mentioned but I find it difficult to know whether something is a distinct symptom or if it is merely a consequence of the pain and lack of sleep.

1. Sleep problems
I do have difficulty falling asleep due to the pain. The pain also wakes me up in the night. As I result, I don’t feel very rested when I wake up and am often tired during the day. Fortunately, I haven’t fallen asleep at work yet but there are days when I would kill for a quick nap at my desk.

2. Vertigo and fainting
I have been experiencing vertigo. I’m not sure why. Is it the lack of sleep? I find that when I am going up the stairs and jus reach the landing, I often have a wave of vertigo and feel as though I am going to fall backwards down the stairs. So far, this hasn’t happened. I have not fainted though I do sometimes feel a bit faint. I can also relate to that separated/distanced feeling. I also get that with migraines.

3. Memory/cognitive issues
Okay. This one scares me the most. I worked hard earning my law degree and I really don’t want to lose it all! Concentration is sometimes a struggle but so far I have been managing at work. If I lose that, I won’t be able to work and that terrifies me. I have migraines with aura and one of my symptoms is language disturbance but so far I’ve only really had that with a migraine. Fingers crossed (well, the fingers on my left hand anyway).

4. Panic attacks
I have never had one. I have seen others have them though. It looks bloody awful. I can understand wanting to leap up and move during flares though. It’s as if you want to run away from the pain.

I haven’t discussed these symptoms with my doctors so I am afraid I can’t offer any advice regarding treatments. I used to take pizotifen for my migraines and I found that helpful. It didn’t prevent migraines entirely but while I was taking it my migraines were less frequent and less severe.

I have experienced 1-3 on your list...all since my RSD spread two years ago and got worse. The cognitive issues seem to be getting worse for me. I haven't been able to read a book in years (and I was a voracious reader before)...but I listen to audiobooks and those seem to be fine. When I try to actually read though I can only make it a page or two before I start re-reading sentences and paragraphs over and over without it sinking in. Now I've been having issues finding works. It took me two hours to come up with the word "dandelion" last week while walking around the yard. I knew it started with a D but could not come up with the word until hours later. This has been happening a LOT lately and is pretty scary.

The vertigo and fainting I have had too. Also dizziness and blurry vision. I was told that these were caused by the RSD and that it has to do with the fact that the sympathetic nervous system controls your blood pressure. Mine goes all wonky out of no where and causes these problems. I now have clonidine patches and that has pretty effectively controlled these symptoms. They used to happen multiple times a day and now I would say maybe a couple time a month...if that. Fainting...most doctors attributed that to the pain levels being so high for me...but it could be related to the same blood pressure issue I think because it usually happened in the middle of another episode of dizziness or vertigo.

Sleep problems I think we all have. Cognitive issues/sleep problems actually fall into one of the four categories they are supposed to use to diagnose RSD...I think. I went almost a year where the most sleep I got at night was 3 hours and it was almost never consecutive. Boy did I have the tv lineup down for those wee hours of the morning. Once I went on amitriptyline I was getting 3 consecutive hours of sleep a night...no more...but it was better than before. A couple months into tDCS treatments I began sleeping better and eventually got off the amitriptyline and now pretty regularly get 6-8 hours of consecutive sleep a night. I still have bad nights from time to time with flares...but those are much rarer now.

Thanks all of you! It's good to know I'm not going crackers (or we all are together haha!).

Number 4 on my list is one I wish I hadn't labelled as panic attacks - I did so in speechmarks because it's something that when I've mentioned it before has been written off as them. While there are some similarities, I have had genuine panic attacks in the past and these are not them. It is a feeling of restlessness, of wanting to kick your legs and get up from sitting/lying and move around, even when in enormous pain, and usually because of being in enormous pain (or at least I think so). It does have a level of "panic" to it.

I've also noticed fluctuations in my body temperature (or my perception of it?) - especially when I can't avoid falling into a daytime nap. It's just happened to me now, I was trying to watch a long RSDSA vid on Youtube, tried to avoid nodding off and couldn't help it for a couple of minutes (according to the timer on the vid it was only 3 minutes and yet I was already dreaming!) woke up feeling excessively warm to the point of wanting to strip naked and sit under a cold shower then run down the street in the buff lol. Sometimes I get sweats on waking, not while I'm asleep and too hot, but within seconds of waking it springs out of me, especially in my CRPS areas (particularly my legs). Other times I can't get warm at all even in summer. I worry about the overheating as this can affect the amount of buprenorphine going into me from my patch. The sweats in my CRPS areas I understand, but this more generalised temperature and sweating issue is a bit odd.

During the worst flares, I find that my "IBS" (still not sure about that diagnosis, it was one of those "We can't understand what's going on so it must be IBS" ones) flares up. Today I have cramping, nausea, pain on going to the loo, bloating, increased need to go to the loo. Often I get very sore RUQ pain alongside a flare, including incredibly hot and burning skin under my right ribs which swells too. Before my CRPS/back problems I was hospitalised twice at which point they thought I had gallstones and the docs witnessed the swelling and redness. I didn't have gallstones. After a pretty horrendous experience of endoscopy, I had a bit of gastritis which didn't explain the RUQ pain and so I got a diagnosis of IBS. I'm beginning to wonder if this RUQ burning along with the "IBS"-type symptoms are actually my CRPS? It's certainly very bad today alongside this more general back pain and CRPS flare.

Thanks for the mention of the patches - I have heard of these before with regards to fainting and assumed they were for low blood pressure rather than high. If they had been for low, I wouldn't have considered asking the docs about them as my blood pressure used to be routinely low and is now creeping higher and higher.

Kathy K -- I know this post is over a year old now.. But I pray, I hope, I wish that some of you are still here and read this.. especially Kathy!!!

Because... O...M...G.... I have the EXACT same things as you -- 1 through 4!!! All of them. Almost everyday. Its almost not even worth repeating what I go thru b/c you go thru it too!

As my Doctor once reminded me "RSD/CRPS" is NOT just a "pain" disease.. its a multi-faceted, multi-system, multi-organ disease affecting capillaries, nerves, breathing, blood, and especially our IMMUNE system.. etc... Our Sympathetic Nervous system is what controls our "Fight or Flight". it basically controls all these functions - body temperature, sweating, ANXIETY!, balance, short term memory cognition(our bodys ability for a nerve synapse to recall a short term meory). all of these functions are damaged .. and primarly when someone who has just been diagnosed - RSD, PAIN, SWELLING, INFLAMATION are first & foremost...

What he told me, and what I have experienced is over the years other functions become or act out randomly getting worse.... .causing all sorts of other issues - Primarily every one you just spoke of.. For me these days its not so much about the pain.. I got stomach issues, the RSD is no longer in my leg as I get burning primarily in my back and face, I have SEVERE anxiety, headaches, confusion, etc.. and my SINGLE WORSE SYMPTOM IS DIZZINESS/FAINTING feeling!!! OMG I can NOT function.. its so bad.. that I always think its cancer or heart failure. That I can't even walk.. stand up.. I dont want to eat it gets that bad...

So just to repeat:
1 - I do have sleep issues - not as bad as yours.. but my mind is racing all the time it causes anxiety and I can't relax.
2 - Not even worth describing b/c my "Fainting" "dizzy" feelings are thru the roof.
3 - Cognitive - my mind always racing. can't focus. I can sit still but I can't focus.. its like ADHD gone Nuclear!
4 - Again, not even worth mentioning b/c my Anxiety is soooo severe and crippling
5 - Pain, headaches, aches, burning burning fiery stinging PAIN! Sometime I get patchy red skin on my back and face when i'm having a "burning" flareup...
6 - STOMACH ISSUES! either from meds, anxiety, or RSD messing up my nerves.. causing me IBS and other problems such as Gastritis and Gastroparesis.. I now am developing "Chronic Polyps" in the colon and have to go every 18 months for a colonoscopy... (no history in my family.. but with all my stomach issues this isn't surprising.. for 3 years EVERY morning I woke up with Diahrea... by night time I was constipated.. by morning diahrea.. THANKFULLY this has gotten MUCH MUCH better!!
7 - sweating!! boy o boy do I sweat. During the summer I have to change my shirt upwards to 5 times a day as I live in NYC. Currently I am in Boulder, Colorado and the sweating has definitely decreased thanks to the DRY weather but causing other skin irritations and problems.
8 - Body temperature - my back can be cold, my hands can be hot. it varies.. and is spread out almost randomly over the body. Like my body can't moderate "body temperature".. As weird as this may sound, it seems I can NO longer get a fever!! in 12 years now I have NEVER gotten a fever! I get sick all the time.. Colds lasting upwards to a month or more.. but my Body can't fire off a fever -- this one I don't know if its connected. My Doctors don't think so.. but I find this odd... b/c I have ALL the flu symptoms but never the fever! (**Granted a few occasions I got a mild fever of around 99.5-100 but only lasted a few hours)

****And the one thing that ties all of this together is RSD/CRPS... there really could be no explanation that causes all these symptoms that in some ways are so vastly different.

I'm in my mid-30s, male, developed a mild case of RSD in my mid 20s after breaking my leg - but then dislocated and caused severe irreparable nerve damage.. thus possibly sparking the RSD.. by my symptoms were always minor.. EXCEPT the burning.. over the years I developed all these other issues you mention!!

And each time my Doctor said I was ok - that it was either RSD, allergies, vitamin deficiency, anxiety, hormonal, or ALL of the above.. they have yet to find something else that would explain the "dizzy/faintish" spells... And, I still want more answers and want ind someone who experienced what I felt..

Kathy -- this is the FIRST time in about 18 months of searching that I finally found someone who has IDENTICAL SYMPTOMS! And I would like to know what other symptoms you experience?? if that's ok to ask? But it is a relief to hear someone else having RSD but with these other 'weird' things... granted I don't wish it on anyone and sorry that you feel as bad as I do perhaps!

But I do hope you get my response so we can continue talking..

To finish .. even tho something else may be going on with me.. perhaps the medications i have been on for so long are causing some of these symptoms... But, we more or less do NOT just have a "Chronic Pain" disorder.. we have one of the few diseases known to man that affect various body systems. And it does seem that RSD is the culprit.

I sure hope to hear back from one of you soon! Thanks for posting. And, thanks for sharing!

All the best -
Marc J

CRPS Symptoms - Description:
FOUR Main Symptoms/Criteria for a diagnosis of CRPS:
• Chronic burning pain - includes allodynia; extreme sensitivity to touch, sound, vibration, wind, and temperature.
• Inflammation - this can affect the appearance of the skin; bruising, mottling, shiny appearance, blotchy or pale appearance, and tiny red dots are some examples.
• Spasms - in blood vessels and muscles of the extremities, called vasoconstriction,
• Insomnia/Emotional Disturbance - (including limbic system changes such as short-term memory problems, concentration difficulties, and irritability).
http://www.rsdhope.org/crps-symptoms.html

*edit* copyrighted article/site -- copyright © 2014 American RSDHope
snip & link only please. Most sites have the copyright at the bottom of every page..

I'd like to add, high blood pressure, accelerated heart rate, difficulty writing because I can't focus, blurred vision, and difficulty speaking my words in the intended order (My words come out in the wrong order often)

Dang Kathy!
I get all of those 4 too!

I've had all the issues mentioned by the OP at different times over the years.

They are examples that our sympathetic systems are dysfunctional.

The most troubling was the vertigo because 1) the danger of falling 2) the danger of driving 3) the expectation from docs that it would be inner ear related, and of course it wasn't. I found that massage helped when the therapist applied pressure to the two bumps at the base of my skull, which seemed to be swollen or have extra fluid in them--and my therapist and I discovered that completely be accident.

Also, I wouldn't call my reaction as a panic attack, but it's more like triggering the fight or flight reaction when I experience a high escalation of pain or sometimes when I get spread to a new area. And again, this seems to be related to the dysfunction of our sympathetic systems if my memory of research a long time ago is correct.