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Crohn's Disease Forum » General IBD Discussion » Unexplainable red hot pain in arms and legs


01-17-2007, 03:02 PM   #1
TammySue62
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Unexplainable red hot pain in arms and legs

Has this or has any one expereinced what I am about to say? So far the drs. are confussed,and cant tell me why I am having this pain.This has been happening to me on and off for about 15yrs. I call it muscle spasams but it is way worse then that. I think that it is associated with having CD. This pain kinda feels like pins and needles but way worse then that.It is very hard to describe this pain. It starts in my left hand down my arm (in slow motion)continues down my left side into my left leg down to my foot,then starts all over again begining at the top (LEFT HAND).It also feels like you no that buzzing or ringing sound you get in your head. Well its sorta like that to combined with the feeling of pins and needles and it feels inside like a burning red hot feeling.Cant controll the arms and legs. Cant sit cant stand,just have to keep moving around till it stops and this happens usually at night. It will wake me up from a dead sleep.NO pain pills seem to calm it down. I have tried 100mg demerol, 16mg dilaudid(which i take everyday for the rectum and fistulaes) 20mg oxycodone IR helps a little bit and 100mg fentynal patch.Sometimes well most of the time it lasts for hours. So painful I start beatin up on my hand arm and leg to make it stop and to try not thinking about it. dosnt work though. My daughter has caught me a few times crying because of the pain. She asks me if there is anything she can do to help me. But she cant. I some times think what she is thinking.She helps me alot and coping with this desease.Oh got side tracked. Does this happen to anyone else? Is it associated with having CD or conflicting with differrent meds? I have spoke to 4 differrent DRS. and they cant give me an explaination or why this happens to me .Just have to cope with this problem too like all the other problems that we face with having CD.


Thanks for reading this post. Any suggestions would be appreciated.or feedback.



Still dealing with the fistulaes or fissures Have had them for about 3-4 months now. Have to see my GI on fri 19 Think he is going to send me to a surgeon.He has been pushing me for the last 3 yrs now to get a illiostomy (the bag) but am afraid too. Question for those who have it. does it interfer with your partner (you no what i mean) and just life in general. Is the surgery painful and how long does the pain last? Could it get infected? This is a big dissision and life changing that I might have to face.


TAMMY
01-17-2007, 03:10 PM   #2
Jeff D.
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Could it be something to do with your heart. I don't want to scarre you or anything but the numbing and pain on the left side of your body could have something to do with your heart. My foods teacher had that all on his left side of his body and they thought he was having a stroke. But it was something to do with cysts in his ear or something like that. I would go and have your heart scanned and maybe see if it could be cysts in his ear.
01-17-2007, 03:47 PM   #3
kix66
 
I'm wondering if you've been checked for Neuropothy, it's a nerve condition that usually affects diabetics. my best friend has it - arms and legs & stomache, my mom had it in her legs. Maybe check the web for Neuropothy see if it matches. Just a thought.

kathy
01-17-2007, 04:08 PM   #4
kissycole_1979
 
I don't reaaly have an answer to your question but I would like to send my sympathy for how you bad you are feeling. That would be a hard thing to have to deal with along with having crohn's. I hope the doctors find out soon what is going on. Good Luck and I hope they find an answer for you soon.
01-17-2007, 04:13 PM   #5
TammySue62
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Jeff D. said:
Could it be something to do with your heart. I don't want to scarre you or anything but the numbing and pain on the left side of your body could have something to do with your heart. My foods teacher had that all on his left side of his body and they thought he was having a stroke. But it was something to do with cysts in his ear or something like that. I would go and have your heart scanned and maybe see if it could be cysts in his ear.


I had all the heart tests done last June. I have a picc-line,it got infected (this is the 5th one) and one of the bugs(staffalitis) not sure of spelling, went to my heart causing a little pinhole in my heart now. But like I said this has been going on for about 15 yrs. or so.Im sure that it is not my heart. Thanks anyway Jeff D.

TAMMY
01-17-2007, 04:20 PM   #6
TammySue62
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kix66 said:
I'm wondering if you've been checked for Neuropothy, it's a nerve condition that usually affects diabetics. my best friend has it - arms and legs & stomache, my mom had it in her legs. Maybe check the web for Neuropothy see if it matches. Just a thought.

kathy


I also had a Neuropothy ask me questions and did some tests when I was in hospital in June. They too could find nothing wrong. Just keep taking pain pills. I think my body is imuned to all the pain pills. Like I said this has been goig on for years.

Thanks anyway TAMMY
01-17-2007, 04:53 PM   #7
Nancy Lee
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Gee Tammy, I don't know what that is you're describing.
But I would be asking my doctor to run an MRI.

In the meantime...I can offer up some healing hugs.

Take care~Nancy
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01-17-2007, 08:09 PM   #8
Jeff D.
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Have thay checked for cysts in your ear canal.
01-18-2007, 02:59 AM   #9
Mazen
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I usually get a mild feeling of pain and also tingling in my hands and feet when I'm flaring. But it's not as severe as you have it. For me it's just bothrsome. I also asked doctors and they said it's nothing. Did you ever take Flagyl? it may have such side effects. I took it for a year and I think that's what caused such symptoms ever since. Hope you feel better soon
01-18-2007, 09:40 AM   #10
TammySue62
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Jeff D. said:
Have thay checked for cysts in your ear canal.




no I think that is about the only thing they havent checked yet.
01-18-2007, 09:49 AM   #11
TammySue62
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Mazen said:
I usually get a mild feeling of pain and also tingling in my hands and feet when I'm flaring. But it's not as severe as you have it. For me it's just bothrsome. I also asked doctors and they said it's nothing. Did you ever take Flagyl? it may have such side effects. I took it for a year and I think that's what caused such symptoms ever since. Hope you feel better soon

Hi Mazen
Yes I tried takink Flagly but,got so sick I told the dr. i was gonna stop it. He then said why dont you try taking through your picc-line.so I did and it didnt make me as sidk. Had to take cipro too because at that time we had to get the fistulaes under control.That was about 5 yrs ago. Slowed them down some but,in the end I had to get them lanced 3 of them. OOOOOch now I have 2 more yah lucky me lol. Like i said this all started to happen around 15 yrs ago.

Thanks anyhow Tammy
01-18-2007, 09:54 AM   #12
TammySue62
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Thanks to everyone who has tried to help me on this problem. There is one person that might have some advise and that would be GNC man orCGN MAN .I dont no how to contact him.


ONce again Thanks for your Help and Jeff I will ask my dr. tommorrow when I see him about cysts in my ear.
01-18-2007, 10:31 AM   #13
katiesue1506
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Hey... I read this and it sounds a lot like what my friend has. However, they don't know what she has either. She describes it as seizure-like things where she will have the red hot feeling and the tingling and I think it was only on one side of her body too. But she has had a numerous amount of tests and they don't know what it is. It used to be a lot worse for her, but now its managable. She said that now when it happens she knows what to do and that it will go away. The difference between the two stories though is that you said yours lasts for hours... and hers will only last an hour at most.
01-18-2007, 11:06 AM   #14
TammySue62
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katiesue1506 said:
Hey... I read this and it sounds a lot like what my friend has. However, they don't know what she has either. She describes it as seizure-like things where she will have the red hot feeling and the tingling and I think it was only on one side of her body too. But she has had a numerous amount of tests and they don't know what it is. It used to be a lot worse for her, but now its managable. She said that now when it happens she knows what to do and that it will go away. The difference between the two stories though is that you said yours lasts for hours... and hers will only last an hour at most.


Hi katiesue1506
What does she do to make it go away?

Thanks Tammy
01-21-2007, 06:48 AM   #15
GNC Crohn's Man
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Have they ever run any tests while you were havng one of these attacks or have you ever had a neuroligist observe one of these attacks? Also have you tried muscle relaxants either as pills you can also get creams that have that effect and/or a local ansethtic either as a shot or again in a cream? Have been checked for migranes or taken migrane meds? Have you had your blood taken around one of these attacks as you may have a deficiency or too much of some electrolytes in your blood? Are thier any common symptoms before an attack such as diahrea, dizzziness, light headedness? Making a food, medication/supplements, and symptom journals may help if you do not know of any common links associated between attacks...
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01-21-2007, 08:51 AM   #16
ruthymg
 
Hi, sorry I can't be of help either with the symptoms you describe as I don't have any of them but I can maybe be of some help with the stoma bag anxieties.

I've mentioned before that I have had fistulas for some time and as a result of them I had surgery for a loop illeostomy leaving me with a stoma bag in June last year. I'll be honest, at first I was extremely nervous about having the surgery, in fact I was scared to death. I too had the same worries as you and I am sure most of the worries are perfectly natural and most people will experience them. After the surgery, yes I was very uncomfortable for a while, that was mostly from my laparotomy scar though, not the stoma site, but within a week I was slowely moving about. It took a couple of months to be able to manage my stoma properly, this was down to the fact that I had problems with the bag leaking. Once I had found the right type of bag, everything was fine. Its also fair to say that most people are a little anxious about seeing their stoma for the first time and I too was one of theose people, in fact for the first two days I wouldn't look at it and the stoma nurse had to do all the cleaning and changing of my bag. After those 2 days though, I decided I needed to get on with it and it didn't take long to get to grips with what needed to be done. In terms of intimacy, there are products you can buy to make your stoma more discreet looking during those moments, and as far as it affecting those moments, I would have to say, no not at all. An understanding partner won't be bothered by it all, mine certainly isn't. Its just one of those things that need to be done, it doesn't change you as a person, you're still the same person they fell in love with if you know what I mean.
I hope this helps a little, if you want to chat in more detail, feel free to PM me, I'll try and help in any way I can.


Ruth
01-21-2007, 09:35 AM   #17
katiesue1506
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She can't do anything, she just waits for them to go away... but like I said, hers don't last nearly as long as yours do.
01-22-2007, 11:10 AM   #18
TammySue62
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Thanks Ruth
That helped me alot. And eveyone else who could help.I would like to talk to Ruth further on the stoma thing. This may sound stupid but what does PM mean(I no its not nite time)

TAMMY
01-22-2007, 01:12 PM   #19
ruthymg
 
Hi Tammy, PM means private message.

Ruth
01-26-2007, 11:26 AM   #20
TammySue62
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ruthymg said:
Hi Tammy, PM means private message.

Ruth

Thanks Ruth
I will PM you and soon AS i get a moment. I would lke to talk to you further about fstulas and stomas



Thanks Tammy (WHY ARE U NOT ON ZOINTS)
01-26-2007, 12:46 PM   #21
ruthymg
 
Tammy Smith said:
Thanks Ruth
I will PM you and soon AS i get a moment. I would lke to talk to you further about fstulas and stomas



Thanks Tammy (WHY ARE U NOT ON ZOINTS)
Hi Tammy

I did try to link to zoints ages ago but at the time my laptop was playing up so I got fed up and gave it up as a bad job. When I get around to it I will try again. PM me anytime to chat about the fistula and stoma probs


Ruth
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