Leg pain?
 

My legs started hurting about 2 months ago and I am getting worse. Last night i couldn't get them to warm up and the pain was crazy. I am off my meds and trying to stay off of them but donot know what to do about this pain.

There are days I am having trouble walking anymore. I just don't know what is going on with them. I have Fibro, MS, RSD, and Central Sensitization Syndrome and I am so confused about what I am dealing with.

As I said, they are ice cold and will be the only part of my body that is, otherwise the rest of me is hot. They hurt so bad I am trying to take over the counter meds but that isn't working.

I know we have talked about this before and I know I need to see my Neurologist but not wanting to make the trip.

Is this really the RSD or might it be something else?

Thanks for any thoughts.

Also, what is a good over the counter pain med that gives the best pain relief without aspirin in it.

Thanks,
Ada

Ada,
Come on GF. Just having anyone of those 4 diagnosis can cause the leg pain & difficulty walking in & of itself. I have heard or seen people in wheel chairs due to atleast the first 3 you listed. I use to get the same thing due to Fibro way before I even knew RSD exisited.

You should probably try to find out which is causing your problem tho at this time. I can tell the difference between RSD, Fibro & Sjogrens pain. It may be that you can't tell the difference tho.

If you have meds you can take for severe pain perhaps you should take them when you get this way?? Only you know what is best for you.

Me I am glad of the pain meds I am able to take. I went far too long with no pain relief & if it had been much longer I probably wouldn't be here. Being under medicated is as bad as being over medicated in my estimation.

Love ya,
Deb

Hi Debby,
 

Thanks for the input.

I just got back from my Drs. office and he is ordering an MRI on me for my lumbar spine. I guess he has different thoughts of what's going on with me.

He has to find some place with a certain MRI due to the Vegus Nerve Stimulator in me. Even with it off, I can't have a regular MRI.

He checked my reflexes and I have none. That's a first. I told him not to stand in front of me when he checks them. I have always had go reflexes no matter what.

So, I guess this is the first step into seeing what is going on with me.

The reason I had to go off of my Methadone is that my it is shutting down my system so we have had to quit it. I have it here and will take it when I am at my worst but it's not like having it in my system. He is afraid that my intestines won't start working again if I keep on it.

What a mess, huh?

Thanks for the input. I hope you are seeing better days. I am glad to see you posting again.

Ada

Requip Perhaps?
 

Oh My Dear Dear Ada!!!

What are we going to do with you? Hmmmm?? You must be hurting something terrible? I have horrible leg pain many nights a week. I was diagnosed with Peripheral Neuropathy about a year or so ago.

My doctor put me on Requip for Restless Leg Syndrome and I have to tell ya - it really works!!! Granted when the pain is real bad I reach for the "Special Meds" :D but usually taking one Requip a day works - and there are no side effects I can think of.

This is just a thought. I sure hope it all works out for you. Hang In There!!!!

Chin Up!! Love Mark :hug:

Hi Mark,
 

Every time I see that picture of you, I just think about how cute you are. LOL
I love it.

I will ask about the Requip. He's so hesitant about giving me meds due to what I have been through with them. Right now I am off of everything due to my system trying to shut down. He's in a panic mode.

My Dr. has PN. He and I compare notes about the pain we are in at times. I just always pray he can keep going. I know it's a tough one from what I have seen him go through since he was diagnosed with it.

I am dealing with a headache now. I have to figure out if it's the VNS or the Flonase. If it's the VNS we have to shut it down again. Nothing new though. We have tried umpteen times to make it work for me and haven't been able to leave it on.

I saw where you had RA also. That's also a rough one. I have a great friend down home that has had it since she was about 14 years old as does her cousin. When I saw her about 15 years ago. She had her hands in braces, had a lot of surgeries to try and help with them. Young people do get it but I don't think you see it all that much and that's what makes people think it's not possible.

I sure hope you start seeing some better days. I know what you have been through and as you said, when you look normal, no one can believe it at times.

Thanks for the advice, I will ask for the requip.

Glad to see you back.

Ada

Ada,
Didn't know your system was wanting to shut down. Altho does that mean every system?? The word system confuses me on this. But to confuse Debby now days is not a hard thing to do at all *LOL*

Well the woman who hit & killed Ron is still sitting in jail of course. There is no way she can come up with the money to get out on bond. Especially seeing as it is a $5,000,000 bond. The trial has finally been set to start next November. A year & a month after he was killed. We have our moments here. And always will. That will be hard tho to sit thru all the testimony & descriptions of what happened etc.

I too have known of children diagnosed with RA. That is really sad when they get it so young. But they do have alot of treatments out now that they didn't use to have.

Oh and as far as an over the counter pain killer without asperin. The only one I know of is Tylenol. The others may not have asperin in them, but they can thin blood. That includes Ibuprofin, Naproxin, etc.

Hope the doc can find the right type of MRI. I know I can't do them either. I have titanium rods in my back since a 3 level fusion in 2005.

DebbyV

Hi Debby,
 

So far the closest MRI for me is in Denver at Swedish Medical Hospital. That's where Bill was when we lost him. It's about 110. miles away. My Drs. office is still trying to find one closer though. I hate to go all the way to Denver. It has something to do with the different coils in them.

I am sorry for what you are going through. So much for a speedy trial huh?

I know my intestines are not wanting to do right. He thought it was from the Methadone and I have been off of it for over 2 weeks and I am still in the same shape as far as constipation. The reason for the MRI is to see if I have lumbar spine problems, scar tissue or something else going on in me. My stomach swells too. I also have trouble with not being able to hold my urine.

I can't believe we have 5 hospitals in our area and I don't know how many MRI places and none have the right MRI machine.

Ada

Hi Debby,
 

It turns out I can't get an MRI anywhere in Co. I guess the Swedish Hospital said yes then they found out they couldn't do it. I have a feeling my next step will be to get the VNS taken out.

I honestly don't know if they make an MRI machine that can do it now. One place says yes, others say no.

Ada

hey there db
 

having two scs in me i know how challenging it can be when a doc wants an mri. because of my hardware we went with catscan. it isnt an equal but if your doctor is concerned somenthing is wrong with your unit he/she will probably be able to see it with the c-scan

Hi wakegirl,
 

We have the unit shut down again but later on I believe it will be taken out.

I had 2 catscans done this month. Not for the unit though. My Dr. is trying to help figure out what is going on with my legs and also my pelvic area.

I do wish I could have an MRI. I think that would help them more with answers but I guess it will not happen.

Thanks for the reply.

Ada

It's physically impossible to have a MRI done if you have metal inside of your body. The way that the machine works is by inducing a huge magnetic field that measures the magnetic spin of water in your body, blah blah blah. But basically, it will rip metal out of you. So spinal leads being propelled through you at high speeds . . . well, it's a bad thing.

I used to do fMRI research, and this was years after having my stim put in and I could never get near the field when working. My doctor said that actually my leads would heat up first and possibly burst into flames before actually being ripped out, so I should always be cautious if I felt any sort of heat in my spine. Said with all seriousness, he said. While laughing.

Linnie

Hi Ada,
Sorry to hear about your leg pain. Mine started almost 4 years ago when a PT was way too rough on me. It is what bothers me the most now. I can't stand or walk for very long. My PM doctor sent me to all the specialists - neurologist, rheumy, ortho, vascular, etc. Each specialist would do his/her test then send me to the next. I've been full circle and they all attribute it to the RSD. What area of your legs hurt the most? Mine is worse in the shins and the top of the feet. I just went on vacation (first since RSD) and spent alot of time in spas. Felt really good but as soon as I tried walking any distance the pain came right back. I wish I could figure this out.
I hope that you are doing better.

Linmarie
:hug:

so true DEb being undermedicated is just as dangerous for your health as being overm
 

Just wanted to say such a good point DEb, being under medicated is just as hard on your body maybe just as dangerous tooo as being overmedicated. touche!

Wow.. Ada
I missed this thread!!

hi Desi,
 

He was checking around to see if it could be done. Swedish Medical actually said they would do it and then said no. They said it takes a certain kine of MRI unit.






Ada