[dreambeliever128]

I got my flu shot last Wednesday. My Dr. got his supply early and was told to make sure he gets them done early. I was just wondering if you girls and guys get your flu shots.

I had my heat on again last night. I had to get up and take meds. My legs were ice cold and hurting along with my pelvic pain. I can't figure out wheather this pelvic pain is causing my leg pain and coldness or if it's part of the RSD.

Since the weather turned cooler around the first of August, I have been having leg pain and legs are cold. I do know I am on them too much but I am trying not to get completely down and bedridden. My Dad spent 7 years in bed and I am trying not to follow in his footsteps. My dad was never diagnosed but my Dr. thinks he possibly had MS due to how his pictures look. I was diagnosed with MS 4 years ago.

Having both MS and RSD really throws me off on what is going on with my legs. I did talk to my neighbor in my old neighborhood last week. We are the same age and he was diagnosed with MS about 1 year before me and we are dealing with the same issues right now. We both have the same MS Dr. also.

Any thoughts on the leg pain?

Thanks,
Ada

[ali12]

Sorry to hear that you aren't feeling well and about your leg pain, Ada.

I am VERY sensitive to the weather changes. I can usually tell if there is going to be a storm as my RSD limbs will start hurting a lot more and i'll go into a flare. My mum always said that i'm a human themometre as I am so sensitive LOL!

I started College last Wednesday and have been having to get up about 7am every morning which has been really hard but I really want to do this college course and i'll probably have RSD for life unfortunately unless there is a cure so I need to try and get on with things best I can. I guess i'm like you - do too much than what I should and end up paying for it a lot!! I've been in bed until 1pm today and slept 15 hours ... guess it was my bodies way of giving me a break but i'm still tired now!!

I had the flu and Pneumonia shots last year on the advice of my Doctor. He said that because I was less active, I needed to have it just to be on the safe side. I got the cold a few days after having the shot and still get colds now so i'm not sure if has protected me fully.

Is it possible for you to speak to your PM Doctor / Neurologist to see if they could give you something to try and help with your leg pain? I'd definitiely speak to them if this continues - you shouldn't have to suffer like this!

I hope you feel better soon and you are in my thoughts and prayers!

Alison

[nancyinLA]

i have RSD & epilepsy - not MS. however, the cool weather wreaks havoc on my legs! i have to make sure i have plenty of cover on my legs or they ache for hrs the next day. i would be sure & ask ur dr. about the leg issue. hang in there.... praying 4 u!

[Mslday]

Dear Ada,

I'm so sorry to hear that you have two major illnesses to deal with.

I'm very sensitive to cold too and if I ignore things I can get into big time trouble with my leg. Over time I've learned that I need to keep the core internal temperature of my leg up otherwise I can spiral down into a major flare very quickly. To do so I use a number of different things such as hot baths , hot water bottles, and hot wax. I don't know how the complications of MS affect your ability to tolerate heat but I hope you are able to get your legs warmed up as that should help reduce the pain somewhat.

The best advice I received right from the very beginning was from my PM Dr. who diagnosed me, he told me to keep it warm and keep it moving. It's not always easy to do but I try to do some type of exercise every day, even if it's just minor gentle range of motion exercises. It does help to keep me on my feet. Also I found that arnica gel has helped my rsd pain when I've been overactive and on my feet too long. It seems to help calm down the skin sensitivity and swelling (don't use it on an open wound). I haven't found anything yet to help me with the deep bone pain.

As time has gone on I have become much more sensitive to pain signals regardless of whether they are caused from my RSD or something as common as menstrual pain. The signals seem to get all get mixed up and sometimes it feels like RSD is taking over my body even though I know it is not so. I can't imagine what it must be like for you to deal with MS on top of RSD.

I've been following some research by Clifford Woolf, MD PhD, director of the Neural Plasticity Research Group and Professor of Anesthesia Research at Massachusetts General Hospital and Harvard Medical School. He's helped develop a concept called "central sensitization" that explains the way the nervous system changes in response to chronic pain, becoming more sensitive, rather than desensitized. It is important work he is doing and hopefully he will be able to find the key to help turn off the pain signals.

I'm not planning to have the flu shot, I stopped having them a few years ago because of my sensitivities and allergies to drugs. I carry a hand sanitizer in my purse and try to wash may hands as often as possible when I'm out in public.

I hope you are able to find some relief, stay warm and feel better again soon.

MsL

[bbpoolgurl]

I am so sorry you are dealing with the two illnesses, and that things are not going well pain-wise.

I am so sensitive to the weather as well, and I have to say I am inclined to believe that the pain is probably part of the RSD. But since I am not a doctor or know much about pelvic pain or MS, I really can't say otherwise besides that.

Have you talked to your doctors about all of this? In terms of helping to relive the pain because of the cold, I know a heating pad really helps me. Also, if you have to be on them or go outside, try slipping those handwarmers (the ones that activate when they are exposed to air) inside your shoes or socks- I know that helps my ankle and foot immensely if I have to be outside.

Hope those little tips help- I know it's not much, and I wish I could help more Try and keep your spirits up, and do some things that make you happy. You are in my thoughts and prayers!!

[bbpoolgurl]

Oh, and I forgot to say- I already have had my flu shot. My mom and dad are both health care providers (and are around it quite a bit, and then bring it home to us), and with that plus my compromised immune system (the RSD plus the clinical depression that accompanies it often makes for a compromised immune system), my pain management doctor recommended I get the shot. I also plan on getting the H1N1 shot as well- the pain experienced from the shot is much better than having the actual thing.

[hope4thebest]

Hi Ada,
The most severe bout of pain I had was last year during December when I was out wearing my flip flops without socks...the ensuing pain that afternoon and evening was was something I didn't want from Santa! The peak of it lasted for a couple of days..I've learned that cold is not my feet and legs' best friend!

When you say that you have been on your legs too much, I think that might be a major caused of the excessive pain...I'll bet the pain level is lower when you take it easy with your legs...

I am learning to pace my self even though I am not a person to measure my movement and activies..but with RSD I know I must...When even a hint of swelling, pain and burn begins I know I've got to rest and elevate (if possible...)
I hope yur legs are better today, so that you can start the week out in comfort..
Hope4thebest xoxox

[daniella]

Hi I am sorry you are in extra pain. Me and cold are horrid aka why I moved to FL. I wish I had more advice other then warm baths and micro fleece. I mean when I was in MI I had microfleece everything from sheets to pj's. I don't get a flu shot. The reason being pre rsd/pn I had the flu every month with a fever for I would say 3 years. It would clear up to come back with a fever a few weeks later. No clue why. Anyhow I got PN and RSD 2.5 years ago and since then have had the flu 1 time so I guess that is why a No for me. Everyone is different and I think there is no right or wrong and just depends on that person. Hang in there and feel better

[dreambeliever128]

Thanks for the help on this. It's only suppose to get to 57 today here. They are calling for snow in some areas of Colorado today. Usually we don't see any here until around Halloween.

What I have noticed about my leg coldness and pain is the only way I can get them to warm up at all is to use the heat. Extra clothes doesn't work. I am going to put my electric blanket on the bed this week. I think we are going to have a early winter. I noticed my legs are weaker then they use to be also.

As far as the flu shots Ali, the first year I got one I still got sick with a cold but after the first year, I did ok with them. We already have H1N1 in the schools here so I think they want to get the regular flu shots out of the way so when the shots for it comes in, they can deal with them. They have cases in 2 high schools in this area, including the one the boys go to.

Hope, flip flops in December? Can't do that here.


Ada

[SandyRI]

Hi Ada,

I saw my GP today, and at his urging I got a flu shot. He wants me to come back in for the H1N1 as soon as it is available. He considers chronic pain patients to be at high risk for both the regular and the swine flu. I do have some pain where I received the injection. But what I am a little more concerned about is the back of my hand where I have had all my infusions and IV's for my blocks - my left hand. Its been really painful around the area where the needle was inserted last week for my Lidocaine infusion the last few days, my infusion was on Wed or Thurs.

It always something...I'm glad it's bedtime!! Have a good evening everyone.

XOXOX Sandy