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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 02-03-2005, 07:25 PM   #1
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Question I am so confused (sorry...long)

Hi,
I believe I am new to this board and am looking for some help. I have Fibromyalgia. I was diagnosed 2.5 years ago. My pain had continuously increased, and my abilitiy to be active has decreased.

A little over 1 year ago, my doc had some concern that some of my symptoms indicated a neurologic problem. I saw a neurologist and had my eyes checked. I had an EEG, EMG, brain and cervical MRI, and evoked potential test. They found nothing.

6 months ago I hurt my big toe, left foot. A series of x-rays and an MRI showed nothing. I was in a cast for 2 months and have done 1.5 months of PT. I still have severe pain in the toe. My left foot and lower leg is discolored and always cold.

I feel like I have begun to lose feeling in my body, on the surface. I have also been having some urinary incontinace. I also am badly constpated. It has been blamed on my pain meds, but I never feel like I have to go, and it is hard for me to feel myself using the muscles necessary to have a BM.

Then there is my eyesight. I not only see floaters, but at times I seem to have temporary blind spots. I have a hard time looking at certain contrasing colors.

I get cold sweats when I am sleeping and qickly go from feeling very warm(almost feverish) to freezing cold during the day.

I don't know what to do, but I know I don't want to go thru another battery of tests just to find out nothing is wrong. I am scheduled for some kind of doppler test to check for blood flow problems.

I know you all can't diagnose me, but could any of you let me know if any of the things I have described are symptoms you have had or that are known symptoms of RSD?

I am at such a loss of what direction to go in right now. Any help would be so greatly appreciated!!
Many soft hugs,
Maria

 
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Old 02-04-2005, 06:27 AM   #2
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Re: I am so confused (sorry...long)

it sounds like you do have possible RSD in the foot but I am more concerned about your other symptoms as they seem like something that is in need of more immediate attention.Have you ever had an MRI done on the rest of your spine??Your symptoms really do sound rather ominus(espescially the incontinence and the loss of sensation in other areas)and are indicative of possible nerve involvement somewhere along the rest of the lower spine area.You could have an area that is severely compromising your spinal nerves or the cord itself.I really think you need to get the rest of your spine checked out with an MRI just to make sure.This could also be causing a good portion of your firbro problems and you may not even have the actual fibro at all.please get this checked out.If your docs don't think it is it, tell them to then rule that possibility out by having the MRI done.I would really push it if I were you.

I also wantd to ask you, have you had anything happen that would compromise youe sympathetic nervous system? there could be something that is also compromising the sympathetic ganglia somewhere along the chain as it actually runs down the entire spine but along the outside at the sides of the vertebrae.This would explain the development of the RSD a well.Just get that MRI,K? please keep us posted.Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 02-04-2005, 01:53 PM   #3
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RSDtrinity HB User
Re: I am so confused (sorry...long)

I had posted this huge long thing last night and then the stupid healthboards went down for maintenance, so grrrrrrr.. My thoughts were along the lines of your medications. Are you taking anything for your FMS, because it sounds to me like a lot of your symptoms could possibly be explained by side effects of popular drugs used to treat pain and inflammation. It's just a thought and i'm sure others will come by to help out a little more. Of course our opinions are just that, and you should seek the advice of a trusted doctor in your area, but let us know what meds you are on and maybe that might help us to decide what this might be. - jessica
And I second the MRI

 
Old 02-06-2005, 04:48 PM   #4
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Re: I am so confused (sorry...long)

Remember...fibromyalgia is basically a blanket diagnosis to define "pain" Usually if diagnosed with it there is realkly something else going on. Investigate as much as possible because fibromyalgia, in the opinion of many doctors is not a condition in and of itslef. It's more of a name to give when they are not sure what is causing the pain.

Celt

 
Old 02-07-2005, 10:47 AM   #5
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aicirtapo HB User
Re: I am so confused (sorry...long)

Quote:
Originally Posted by nmamommy
Hi,
I believe I am new to this board and am looking for some help. I have Fibromyalgia. I was diagnosed 2.5 years ago. My pain had continuously increased, and my abilitiy to be active has decreased.

A little over 1 year ago, my doc had some concern that some of my symptoms indicated a neurologic problem. I saw a neurologist and had my eyes checked. I had an EEG, EMG, brain and cervical MRI, and evoked potential test. They found nothing.

6 months ago I hurt my big toe, left foot. A series of x-rays and an MRI showed nothing. I was in a cast for 2 months and have done 1.5 months of PT. I still have severe pain in the toe. My left foot and lower leg is discolored and always cold.

I feel like I have begun to lose feeling in my body, on the surface. I have also been having some urinary incontinace. I also am badly constpated. It has been blamed on my pain meds, but I never feel like I have to go, and it is hard for me to feel myself using the muscles necessary to have a BM.

Then there is my eyesight. I not only see floaters, but at times I seem to have temporary blind spots. I have a hard time looking at certain contrasing colors.

I get cold sweats when I am sleeping and qickly go from feeling very warm(almost feverish) to freezing cold during the day.

I don't know what to do, but I know I don't want to go thru another battery of tests just to find out nothing is wrong. I am scheduled for some kind of doppler test to check for blood flow problems.

I know you all can't diagnose me, but could any of you let me know if any of the things I have described are symptoms you have had or that are known symptoms of RSD?

I am at such a loss of what direction to go in right now. Any help would be so greatly appreciated!!
Many soft hugs,
Maria
Maria - I do not know how old you are - are you the age where you could be going through premature menopause. I have RSD or CRPS in my knee. I also have floaters, sensitivity to bright light, the sweats and cold and hot flashes and tend toward constipation (the answer to that one I found was to eat food with fibre and drink lots of cold water, especially first thing in the morning before eating or having coffee - even if caused by drugs - it works). However, these things are not necessarily related. But that might depend on your age. I am 60 - went through menopause at 45. My RSD has nothing to do with any of the other things, it came later as result of car accident so it might be that these things are coming at you at the same time by co-incidence. I would say you definitely have RSD in your foot and need it treated by a pain management team right away, and I am not sure if the other things are related or not but don't assume they are - floaters are common in people over a certain age. Ask about these other things and get the RSD treated regardless. Good Luck. Laura
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Old 02-09-2005, 05:33 PM   #6
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Re: I am so confused (sorry...long)

I'm not an expert, but I have had some experience with some of your symptoms. Mine were directly attributed to some meds I was taking after having gallbladder surgery. My doctors at the time had me on amitryptaline (sp?) and a hefty dose of steroids for colon spasms from the surgery. About 1.5 weeks after surgery, I was back in the hospital with an impacted colon. The problem was that the antidepressants can cause the contractions in the colon to slow too much and also can act as a relaxant to some of the muscles in the bladder. This could explain at least that part of it. I was in and out of the hospital for almost one whole month with impacted colon problems before they took me off the meds. Also, just the stress of worrying about it and not feeling started causing some other problems too. I've had RSD going on about 1 year now and I've noticed some of your other symptoms listed. Like I said, I'm not an expert, but I think I would push for the MRI too. Check on the side effects of any meds you are taking. Please don't let it go too long and end up in the hospital like I did. The treatment is to drink a gallon of stuff that you have to drink over the coarse of about 2 hours. YIKES!!!!! I don't what was worse.

Please take care.

 
Old 02-11-2005, 11:50 AM   #7
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Re: I am so confused (sorry...long) & LONGER

Hi. I'm not an expert either, but I've had to live with RSD for almost 8 years now.

From how you describe your foot it does sound like you have RSD. That is exactly how mine started. I fell off a Sea-Doo and banged my big toe on my right foot. The simptoms you describe are very similar to mine. Everyone would always tell me that one of my legs must have come from another body. That's how different the colors were.

I too have eyesight problems now. I never wore glasses my entire life, and since the RSD my eyes have been getting worse each year. Some say it is the meds, others say it is the 'over 40 sindrome'. But it's driving me crazy. I have pairs of glasses all around the house just so I have them handy when I need to read anything.

The temperature changes you mention are also very common with RSD. My right leg is usually cold, but the rest of my body is sweating all day long. I live in Texas and I haven't worn anything with sleeves or 'legs' in years. I wear shorts and a tank top 12 months a year. Even going out to dinner or shopping, I'm in shorts and a sleeveless shirt. And I still sweat profusely. I have to keep our house at 67 degrees daily. Our gas heating bill is very cheap, but our electric (AC) bill is out of the roof. The AC gets used 12 months a year.

About the "urinary incontinence" and "BM", I can sure relate. I'd had "Irritable Bowel Disease" since 1996 that had me on the john all day long. Then when my RSD doctor put me on the "Duragesic" patch (Fentenyl) he said it's only long-term side effect was "constipation". My reply was "Bring it on!!!". Would you believe it solved the IBS problem? I used to be on the john for a BM about 10-12 times a day. Now I do it ONCE every 10-12 DAYS. This has swung farther in the other direction than I wanted but I'm living with it. I also take a stool softener every night (with my shot glass full of other meds) and it helps to minimize any constipation pain.

As for the "urinary incontinence", mine has been the other extreme. I think it hit me when my RSD doc increased my Duragesic to 75's. All of a sudden I started having problems emptying my bladder and I was going 24 hours at a time without being able to go. My wife would find me asleep in the john either standing or sitting on a nightly basis. I can't tell you how many times I'd falled face first into the wall or the floor. I went to 2 urologists with out any result. The second wanted to do some 'invasive' tests where they would insert a catheter through my back and into my bladder, as well as a catheter in the 'you know what'. Us guys are pretty protective of that thing so I skipped the tests and went it alone.

The way you said "it is hard for me to feel myself using the muscles necessary to have a BM" is EXACTLY how I have been explaining it to my doctors. It's like the muscles down there aren't connected to my brain any longer. I've tried over and over to explain it but no one seems to know how I feel. This may not help in your case, but what I have finally found to work is to sit there and let every muscle in my body relax. Take every thought out of your mind and pretend that you don't control those muscles down there. I then let 'gravity' take over and after a while my bladder empties. I can't "force" it out like a firehose, like most men always do. I have to let it 'drain' out a little at a time, as if I don't control it at all. 30 minutes in the john to empty my bladder is pretty normal for me now. And I do that anywhere from once to three times a day. I never get that 'urge' that my bladder is full like I always used to, and after I go I can't always tell the difference. Sometimes I have to take a look in the toilet just to tell if I went or not. This usually only happens when I'm tired or if I've been reading for awhile and have a memory lapse (which is all together another subject).

I'm sorry I've dragged this on so long but I wanted to add my "2 cents" to the discussion. Also, I'm new to this group. I just stumbled on it today.

Best of luck,
~Steve

 
Old 02-11-2005, 04:27 PM   #8
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Smile Re: I am so confused (sorry...long)

Hi Steve,

I just wanted to welcome you to the board. There are great people here. I hope you like it here as much as we do. I've had RSD for 18 years and now have a morphine/bupivacaine pump that helps a lot. I'm 34 and live in NY. Hope you stick around here. I'm sure you have a lot to add to this board.

Sharon

 
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