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anthony1953
New Member


Date Joined Jul 2011
Total Posts : 1
   Posted 7/10/2011 3:37 AM (GMT -6)   
i have rsd it is so bad now i dont want to go into a wheelchair but i does seem i will have to just to get som kind od normality [img]/community/emoticons/mad.gif[/img]


Anthony, I added a subject line so the members would see your post better.

Post Edited By Moderator (straydog) : 7/10/2011 9:52:36 AM (GMT-6)


CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 7/10/2011 6:53 AM (GMT -6)   
Hi Anthony, and welcome to the Chronic Pain forum. I've had CRPS/RSD for 12 years - mine started after a knee injury when I was 14 and has spread from there. I've got full body and now internal involvement. There are a few other members here with CRPS as well, so you're not alone.

I'm sorry that yours is so bad right now - is it 'just' your leg/s that are affected? How long have you had it? What treatments have you had or are you on now?

Please don't give up, and please try your hardest not to give in to a wheelchair - if it helps you with getting out and about, then that's great, but remember (I don't know how much you know about the 'workings' of CRPS) that not using your affected limbs can actually make CRPS worse.
 
It becomes a 'rock and a hard place' situation - it's often impossible to walk because of pain and other complications (for example I've dystonia with equinovarus deformity of both feet that leaves me heavily reliant on a chair for anything other than very short distances.
 
Using crutches or a wheelchair carries a lot of problems - it can contribute to oedema, to loss of muscle, to osteoporosis, but most importantly, the less you use your affected limbs, the more ingrained those abnormal pain signals of ours become. I guess what I'm trying to say is if you have to use it, use it in moderation - use it to give you a life outside your home, but try to keep moving as much as possible AT home :)

We're all here for you as a source of support, but if you've got any CRPS/RSD questions please feel free to ask. There's not much I haven't come across and not many treatments I haven't tried.

Laura
 
 
(edited for easier reading) Thanks! SE wink

Post Edited By Moderator (Screaming Eagle) : 7/11/2011 8:24:14 AM (GMT-6)


Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 7/10/2011 8:05 AM (GMT -6)   
Good morning Anthony!

Welcome to the Chronic Pain forum!

I myself don't suffer from "RSD", but a few of our members do, and I'm sure they will visit with you about it, such as "CRPSpatient" has here.

Are you on any med's for this condition, and are any of them pain med's? I know you are having more than a difficult time with this, but as Laura said, please don't loose hope. We are a wonderful support group for those suffering pain, so you can count on us to be there for you as well. My best forum advice to you, would be to stay engaged here with the members, and make your self at home with us. We have plenty of room for you, so you may as well stay for a while.

I always invite new members to take a peek at the "Chronic Pain 101" located at the top of the home page here. The article's are very, informative, so please do take a peek at it, when you find some free time.

The more you can tell us about yourself the better we can suggest and share our experience's that are related to yours, so share what you can.
Feel free to ask anything, and please visit us often…you are so very welcome here.

Take care!

Again "Welcome" and enjoy the forum!

SE
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

Post Edited (Screaming Eagle) : 7/10/2011 7:10:39 AM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 7/10/2011 10:57 AM (GMT -6)   
Hi Anthony and welcome to Healing Well's chronic pain forum. I am glad that you found us but very sorry that you have to be here. I do hope you will decide to hang out here at the forum, as we do have members afflicted with RSD.

You have heard from Laura who also has this condition and she is always full of good tips and ideas to help manage this problem. Just do not give up or in, because of this condition. You did not give much info to us as far as what treatment you are receiving so its is really a little difficult to know where you are treatment wise.

I hope that you will come back and give us a little more input about yourself. Take care.
Moderator Chronic Pain Forum

Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 636
   Posted 7/10/2011 11:04 AM (GMT -6)   
Hi Anthony, welcome to HealingWell. I also have CRPS/RSD and it has travelled over the last 8 years. I just had a small fiber nerve test last week and basically failed every area they tried. Fortunetely I dont have any internal invovement, but who knows at this point, i have crazy blood pressure and other unexplained issues.

We have no clue as to when it started, but we have it narrowed down to a spinal menangitis episode as a young adult that they think caused arachnoiditis as well or my first spinal surgery 3 years ago (but i seemed to have symptoms before that although not nearly as bad). I have also recentely been dx'd with a cyst in my spinal cord so that could be the culprit as well.

My CRPS is based in the spinal cord as far as thr dr can tell, although like I said my dr is kind of learning as he goes here. I did go to a nerologist and he said CRPS is not a dx he believes in. I do need to find someone with more experience.

I have not been able to find a dr with really good understanding at this point. I think it is very important to find someone who understands, i am still searching.

So far, meds have not worked for me, I cant tolorate the side effects. As of now I rely on pain meds. I had a sucessfull spinal cord stimulator trial but the neurosurgeon I was sent to for placement also found that my screws were not placed safely so they needed to come out first. Now that I had them removed he wont do the SCS due to my hypersensitive pain response. My PM doc is baffled at this point and we will be looking for another dr willing to do the placement.

Feel free to ask the members any questions. I havent been around for long but have been welcomed with open arms by all.

Hig hugs,
Shell
DX: CRPS/RSD full body, Fibro, CP, DDD, DJD, OSA, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. SCS trial successful awaiting placement.
MEDS:To many to mention, changes every week it seems.

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 7/10/2011 3:58 PM (GMT -6)   
How did everyone get diagnosed with rsd.I would like to know.what kind of tests are needed to diagnose?I don't appear to have any major swelling or discoloration in my foot but I have what feels like tarsal tunnel in the left foot with negative emg's and nerve conduction(although I know you can't diagnose it by that).
 
I do have sudeck's atrophy and osteoporosis in that foot and a little in the other one but the podistrist said sudeck's atrophy can be caused by other things other than rsd. I have multiple allergies and I didn't have them before and ridged nails and graying hair.I but a bandaid on(latex free)then later when I peeled it off the skin came off with it.
 
I need to know what tests to ask for.As of now I am afraid to take my anihistimes for my allergies cause I read it makes rsd worse if thats what I have.This all started after I will immobile for 3 months from complications of status asthmaticus.
 
 
(Edited for easier reading) Thanks! SE wink

Post Edited By Moderator (Screaming Eagle) : 7/11/2011 8:21:10 AM (GMT-6)


kittycreation
Regular Member


Date Joined Jul 2011
Total Posts : 36
   Posted 7/10/2011 4:27 PM (GMT -6)   
I appologize for my lack of knowledge but do want to educate myself so that I can be supportive. What is RSD?

I can tell that it is something causing you to be very upset and so I am sorry that you have just been given some bad news. I do know that once we get used to something - wheelchair, crutches or any other aid it can sometimes be more difficult to ever think we can't survive without so I understand why Laura wrote what she did.
I pray and wait for God to do His thing in His time...til then I am waiting with chronic pain...

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 7/10/2011 4:47 PM (GMT -6)   
Here Kitty…this will explain it…

en.wikipedia.org/wiki/Complex_regional_pain_syndrome

…….and again…. rarediseases.about.com/od/rarediseasesr/a/012205.htm


SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

Post Edited (Screaming Eagle) : 7/10/2011 3:50:36 PM (GMT-6)


kittycreation
Regular Member


Date Joined Jul 2011
Total Posts : 36
   Posted 7/10/2011 5:10 PM (GMT -6)   
Thank you SE....

Oh dear Anthony... what I just read sounds very complicated and difficult to have to deal with. I will keep you in my prayers...
I pray and wait for God to do His thing in His time...til then I am waiting with chronic pain...

Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 636
   Posted 7/10/2011 6:04 PM (GMT -6)   
CRPSpatient, what type of doctor do you see? My PM doctor is trying his best and I trust him greatly but i cant help wondering if soemthing else could be done for me.

Also wondering, how it was determined about your internal involvement?

Nana68, I was dx'd based on my symptoms and history. However last week I had a small fiber nerve test and my PM doctor feels that these results give a pretty good confirmation of the dx. Something about people with CRPS have lack of, damage to, or overhyperactivity of the small nerve fibers in their skin. This is something that an EMG and nerve conduction studies will miss!
DX: CRPS/RSD full body, Fibro, CP, DDD, DJD, OSA, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. SCS trial successful awaiting placement.
MEDS:To many to mention, changes every week it seems.

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 7/10/2011 7:01 PM (GMT -6)   
thanks shell....I am pretty sure I probably have it even though I have no visible discoloration or extreme swelling because what else could cause difuse osteoporosis and sudeck's atrophy in foot.The podiatrist says sudeck's could be caused by immobility but everytime I look something up about it it says rsd.
 
I have one fingernail that has white spots on it,my teeth are rotting and my foot feels heavy when I stand too long.My hair has grown in more gray than when I was first sick.I have had so much going on in the last year I don't know what its from.
 
I have had so many medications that could cause some of this like predinisone(it can cause demineralization and wiry gray hair and acne)the floraquinilones can cause myalgias and tendon problems I am just worried because the podiatrist said osteoporosis and sudeck's atrophy.
 
 
 
(Edited for easier reading) Thanks! SE wink

Post Edited By Moderator (Screaming Eagle) : 7/11/2011 8:22:18 AM (GMT-6)


CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 7/10/2011 7:35 PM (GMT -6)   
Hi Shell,

I used to see an anaesthetist who had further qualifications in pain management and a particular interest in CRPS. He and I had a few issues though, and my dystonia was beyond the realms of his expertise, so he referred me on.

My current doctor has many hats. He is a neurologist but his primary specialty is pain management and rehabilitation. My internal involvement has been diagnosed just as CRPS in general usually is - signs/symptoms, and because every other diagnosis has been excluded. The big red flag is that the internal problems came on as my CRPS started going full-body - and if I have a bad flare the internal stuff goes haywire as well, irrespective of any meds. The other clue is that my other problems are all signs of autonomic dysregulation.

My biggest problem is with gastroparesis - I came very close to death a couple of years ago because I couldn't keep any food down and eventually ended up in hospital weighing just 28kg (I weighed more than that as a fit and active 10 year old...). In addition, I get a lot of GI pain that is very similar in character to the external body pain of CRPS. I also have a lot of trouble regulating my heart rate and blood pressure. Like with the gastroparesis, this all started around the time my CRPS started getting really aggressive and I'm under a cardiologist who can't find any explanation for it. I have low BP and orthostatic hypotension into the bargain, and without meds to keep my blood pressure up I sometimes can't even sit, never mind stand up without getting dizzy.

What treatments have you had Shell, other than pain meds? I know you said that you can't handle some of the other meds - are you talking about the typical nerve pain meds like Neurontin and Lyrica? Have you tried some of the less commonly used ones like Cymbalta or even Topamax?

Although it's an opioid, Methadone is sometimes better for CRPS patients than other narcotics - it has some activity as what is called an NMDA-receptor antagonist. NMDA receptors play a role in a lot of pain pathways - in particular a process called 'wind up', which a lot of research suggests is central to development and maintenance of CRPS pain. This is the same rationale for using ketamine to treat CRPS patients. I guess that's another one to consider if you have access to it. I have had a pretty bad time with it because my body is horrendously sensitive to it, but I know a lot of people who've had infusions and most get good relief from it - I think it's more difficult for you guys to have done, but here in Australia it's commonplace - I think I know only one person here with CRPS who's not had an infusion.

Nana - I was always led to believe that Sudeck's Atrophy was just yet another name for CRPS/RSD/etc. Diagnosis is usually made on history, clinical signs and symptoms. Tests are only useful up to a point - a positive EMG/nerve conduction study/bone scan/*insert test here* can be used to help diagnose CRPS, but a negative cannot be used to rule it out. Or as my old clinical pathology lecturer used to say - "Absence of proof does not mean proof of absence".

Whatever is going on - are you seeing a pain management specialist?

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 636
   Posted 7/10/2011 8:30 PM (GMT -6)   
CRPSpatient, beyond the typical nerve meds (lyrica, neurontin and cymbalta), I havent tried anything else. These meds turn me into a zombie at the slightest doses. I asked my dr this week to try again, since I am at home just relaxing but he is hesitant since I had such intense responses before. So beyond that all I have is my pain meds. There was some reason they couldnt do Topomax, it was either do my blood pressure of an allergy, I cant remember.

Although, I may ask about the methodone at my next appointment, maybe it might be something to consider. I can tell you that my meds now take the edge off but being at a 6-8 pain level every minute of the day is no way to live. If you have specific research literature in regards to ketamine infusion I would gladly forward it on to my PM doctor. I have no clue as to its us in the US. My dr is really willing to work with me and after this test last week, he is looking to proceed. I am still interested in the SCS, I was hoping and praying that might make the difference.

Thank you much for the info!
DX: CRPS/RSD full body, Fibro, CP, DDD, DJD, OSA, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. SCS trial successful awaiting placement.
MEDS:To many to mention, changes every week it seems.

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 7/10/2011 9:19 PM (GMT -6)   
I don't have alot of pain or atleast what I think of pain,not where it is not tollerable anyway.My problem is the stiffness and burning,it was just in one foot/lower leg and is creeping into the other.my chest and back shoulder blade area get it sometimes.I did have low vitamin d for a while.I don't know what should I do for the muscle tightening?I really don't want anything thats gonna cause more side effects.
treacheal stenosis,fibromyalgia,panic disorder,ptsd and who knows what else

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 7/11/2011 3:25 AM (GMT -6)   
Nana- I think the fact that you don't have severe pain with it is a good sign - the number one dignostic criteria for CRPS/RSD is very severe pain. I would reiterate what I said earlier about the need for you to try to find a PM specialist who has some experience with the condition. For the muscle problems, it might be wort asking your doctor about taking a muscle relaxer?

Shell- Neurontin and Lyrica put me in zombie land too, and Cymbalta was just a disaster. I was put on it for both antidepressant and neuro pain killer effects and it made my depression 1000 x worse...didn't know who I was anymore, the whole world was against me, and I think had I not stopped it (I was only on it a few days), I think I wouldn't have survived.

I haven't anything to hand on ketamine, but I know that it is fairly well studied so I'll have a look for you later on tonight and see what I can turn up for you.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 7/11/2011 8:36 AM (GMT -6)   
Shell - I'm sure I've got some stored on another hard drive somewhere...I've got a big CRPS file, and I can't find it. I did have a look on PubMed for you and came up with this article... I can't get the full text, so I can only go on what's in the abstract, but I'm sure your doctor would be able to access the full text.

Am I allowed to post an article link here? I hope so - http://www.painjournalonline.com/article/S0304-3959(09)00368-6/abstract
 
      

I'll go searching again tomorrow :)

Laura
 
  (yes!...you are fine Laura!) You ladies are doing a great job!
It's all about support!..and you're getting the job done! :-)
 
Links to article's are fine as long as there in no monetary benefit,
such as sales for items and or information.
Thanks SE wink

Post Edited By Moderator (Screaming Eagle) : 7/11/2011 8:26:27 AM (GMT-6)


Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 636
   Posted 7/11/2011 8:58 AM (GMT -6)   
Thank you very much, Laura.
DX: CRPS/RSD full body, Fibro, CP, DDD, DJD, OSA, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. SCS trial successful awaiting placement.
MEDS:To many to mention, changes every week it seems.

yogurtfriend
New Member


Date Joined Jul 2011
Total Posts : 1
   Posted 7/26/2011 1:29 PM (GMT -6)   
My best friend has had RSD for about 5 years and she just went to the Calmare Clinic in New Jersey for a few weeks of treatments (after trying several methods, including tons of nerve blocks) and after the first day she felt better than she had the entire time she has had RSD. She just completed the treatment and is pain free. I would look into applying to be a patient!!! It's a miracle!

antsawol
Regular Member


Date Joined Nov 2008
Total Posts : 20
   Posted 9/6/2011 8:53 PM (GMT -6)   
I live in NJ, and just looked up Calmare clinic. I'm going to call them tomorrow, but I am a little skeptical. Sounds too good to be true.

starsunshine
Regular Member


Date Joined Sep 2011
Total Posts : 27
   Posted 9/9/2011 9:09 AM (GMT -6)   
i was diag. after a car accident 20 yrs aga with rsd in clavicle, chest & upper arm, places i haven't heard of except when people have entire body rsd . treatment then was archaic . ice packs!!!!! etc.... i'm immune to meds , especially narcotics . have used compound numbing cremes . don't do a thing . after cervical epidural which caused more muscle spasms in my back from fibro, i've still decided to try 2 more injections to see if nuero. surg. can find correct site before i give up on that idea . my next step is scs . i'm just afraid it will flare up fibro. well, i guess that's why trials r good . i've been told good sources of info are : RSD.ORG & RSD Hope .org . i haven't checked them out yet but was given info from someone who has allover body rsd . good luck to all sufferers . so glad i found this site . 1st time i've met so many people with rsd .

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/9/2011 10:29 AM (GMT -6)   
Hi star sunshine and welcome. This is quite an old topic - maybe introduce yourself again in a new topic so that everyone can welcome you properly.

Sorry to hear that you've been dealing with this so long...it's 12 years for me. Can I ask what meds and other treatments you've tried?

Look forward to getting to know you.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio
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