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 09-06-2014, 08:29 AM #1
JK123 JK123 is offline
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Unhappy Not sure if I have CRPS -welcome your comments and reassurance

Hi all,

I am not sure if I have CRPS. 7 months ago I developed knee pain after walking in a pair of heels. A month later, I developed tennis elbow-like pain on both sides. 3 months ago my right foot developed arch pain and a bit on the left too. I was seeing physiotherapists all this time, then started to see a podiatrist for the arch pain. They gave me orthotics and in the 2nd week of wearing them I had excruciating shooting pain in my heels. That is when they started to suspect nerve pain. I can't put my heels on the mattress at night without using cushioning underneath and a rolled up towel to protect my heels, so falling asleep takes a while. I went to my GP who was unsure of what is wrong and suggested I start taking Lyrica 25mg at night at first then 50mg (reduced to 25mg again as I don't think it's helping).
This didn't help much so I started taking 1 x Tramadol 50mg at night as well. I can't take much more as it constipates me.
As a result of not being able to walk too long, my upper and lower back hurt now too. Not sure if this is a knock-on effect.
I saw a rheumatologist 2 weeks ago, he ordered a whole body bone scan (which has come back clear) and a whole lot of blood tests for autoimmune diseases. My GP had a copy of some results all of which were negative except ANA (antinuclear antibodies). I am seeing the rheumatologist again next week as well as a pain specialist.
I am petrified of what is wrong with me and what the rest of my life will be like. I'm only 41 and was still hoping to have a child -I have been doing IVF for 4 years.
I live in Melbourne Australia. Please send me your comments and most of all reassurances as I am very scared.
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Old 09-06-2014, 01:34 PM #2
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You are doing the right thing with testing and seeing multiple specialists.

Did you ever have any actual "trauma" to any part of your body before these symptoms started?

This sounds like it could be something other than CRPS in my opinion. But as we're not doctors, keep at it until you get a diagnosis that fits and is solid. And a treatment plan to match. I'd be certainly interested to see what that Rheumatologist has to say....

Good luck and keep us updated!
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Old 09-06-2014, 10:34 PM #3
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Hi birchlake,

No I didn't have any trauma as such unless you consider the knee getting sore after walking around in heels as trauma.
I will keep you posted.

Joanne
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Old 09-07-2014, 06:37 AM #4
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Hi Joanne,

Sorry to hear you are going through this. I agree with Birchlake. It doesn't sound like CRPS to me.

It sounds like more generalized inflammatory and/or neuropathy issues. Be interested in the rheumatologist's take as well.

For what it's worth, orthotics did a similar thing to me - took an existing case of plantar fasciitis (severe arch pain with heel spurs) and made it much worse. I've found that modern footwear in general (especially heels!) sets the body up for unnatural (compensated) biomechanics that erode joints and connective tissue over the long term. (Back problems anyone?)
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Old 09-07-2014, 06:54 AM #5
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Originally Posted by visioniosiv View Post
Hi Joanne,

Sorry to hear you are going through this. I agree with Birchlake. It doesn't sound like CRPS to me.

It sounds like more generalized inflammatory and/or neuropathy issues. Be interested in the rheumatologist's take as well.

For what it's worth, orthotics did a similar thing to me - took an existing case of plantar fasciitis (severe arch pain with heel spurs) and made it much worse. I've found that modern footwear in general (especially heels!) sets the body up for unnatural (compensated) biomechanics that erode joints and connective tissue over the long term. (Back problems anyone?)
--------------------------

Thanks Visioniosiv, I value yours and Birchlake's opinions and I appreciate your quick replies.
I would be glad if it wasn't CRPS, although I think neuropathy is difficult to treat anyway. I will let you know what the rheumatologist says.
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Old 09-07-2014, 06:46 PM #6
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Neuropathy or possibly another immune related problem may be difficult to treat, but when push comes to shove, I'd take that any time rather than to have CRPS.

I have a good "gut" feeling that you are going to get this figured out and get to moving on with your life!!
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Old 09-07-2014, 09:46 PM #7
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Quote:
Originally Posted by birchlake View Post
Neuropathy or possibly another immune related problem may be difficult to treat, but when push comes to shove, I'd take that any time rather than to have CRPS.

I have a good "gut" feeling that you are going to get this figured out and get to moving on with your life!!

----------

Hi Birchlake,
I hope by God you are right. I feel especially horrible today. I have pain everywhere. I took 2 Tramadol yesterday rather than one, thinking I'd get 6 hours of less pain, but I paid for it this morning. I had an **** fissure surgically removed 2 years ago and it flared up again 2 months ago. The extra Tramadol constipates me, so its always a trade off. I am afraid the specialists will not have any other medication to suggest that will not constipate me. I pray they will have some solutions.
Sorry to focus on myself, I hope you are having an OK day and thanks for your words of encouragement.
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Old 09-07-2014, 10:19 PM #8
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Hello,

I am sorry you are having such a rough day! Regarding medications being constipating have you tried using dried cherries or cherry juice to help combat that? There are many OTC remedies to help with that if the medications are helping you, it might be worth figuring out what helps your body combat this.

I do hope you get answers sooner than later!

Hang in there,
Tessa
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Old 09-07-2014, 10:52 PM #9
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Hello and welcome !!!!
I'm so sorry you are suffering with such of pain and not having a clear diagnosis makes things so hard.
I also take tramadol and my dr and pharmacist recommended me MIRALAX ,Check with your dr might help ,helps me for sure I swear it changed my days.
Also tramadol added some insomnia ,also discuss with your pharmacist every single side effects he meds you are on will give you,they can do a print out from their pharmacy we side and sure will answer some questions about side effects .
Also check this sites www.rsds.org and www.rsdhope.org to get more Information about rsd,education is the key and sure will be give you the tools to talk openly with your dr .
Gentle and loving hugs ,Jesika .
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Old 09-07-2014, 11:12 PM #10
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Quote:
Originally Posted by zookester View Post
Hello,

I am sorry you are having such a rough day! Regarding medications being constipating have you tried using dried cherries or cherry juice to help combat that? There are many OTC remedies to help with that if the medications are helping you, it might be worth figuring out what helps your body combat this.

I do hope you get answers sooner than later!

Hang in there,
Tessa
--------

Thanks guys. Yes I already take lactulose as a stool softener. It helps, but I have to increase how much I take when I take more Tramadol. Also it is significantly affected by the day in my menstrual cycle, ie, in the days leading up to my period I can barely tolerate the constipation from one Tramadol. The problem is that both constipation and diarrhoea aggravate the fissure. I feel like I'm in hell no matter which way I turn.
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