[frogga]

Hey babe


Where are you? I hope the PM dr didn't admit you - or if they did admit you I hope that things are calming down abit and you are getting the treatment you need!!!

All my love and missing you!!!!

Froggsy xxxxxxxxxxxxxxxxxxxxxx

[Vicc]

What sbe said.

Lots of people here care about you very much...Vic

Hi IHH,

Yes, this is true, wishing you well also, and sending love
all the best.

[allentgamer]

Yuppers

/agree with everyone

[InHisHands]

Aww... I was pleasantly suprised to see this thread, and see you guys missed me! How sweet and caring!!

A lot has been happening with me... and that is why I have kind of dissapeared.

I spent practically 2 weeks in a dark quiet room- the migraines from the facial RSD were killing me. I couldn't see straight, I was vomiting from the pain, had major nausea, dizziness and then I ended up fainting after trying to walk (between the migraine and the RSD pain)- which I am thankful I didn't injure myself from (hurt, and set the pain off worse though)- as I colapsed onto the wooden floor!!

To say the least it has been pretty nasty! The pain has been dreadful!

I saw my PM Dr. (and my PCP- but she couldn't do anything because she doesn't deal with my meds- my PM Dr. does that- and she didn't feel comfortable prescribing me something because I am on meds that 1) she doesn't work with, 2) are normally used in adults (though I am close enough to age/ weight I know I am the correct size) and she doesn't work with RSD at all- that is all my specialist's job), Froggsy, and she (my PM Dr.) decided to treat the migraine as a seperate issue/ as from the RSD. It has worked well, and the migraine med has cleared the migraine up about 80%! Yippee!

The facial RSD/ jaw thing has been HARD though- it hurts like heck to eat, talk, etc.. I only get relief from COLD drinks. Trying the touch it, move it, use it method. I am making myself chew gum, gently massage my face and use some heat as well. My jaw is opening about 1 1/2- 2 inches now, but it is still locked pretty good (or rather, pretty bad) on the right side.

My neck is giving me a hard time. And I have major complaints of the back pain that feels like it is radiating into my stomach and chest! Phew- I would think I was having a heart attack from the chest pain, but it is just the major spasms from my back. That pain stops me from moving at all and makes me scream and cry! I hate it!! My Dr. is hoping that the muscle relaxers will help, and she told me to take ibuprophen for the muscle pain I am having on top of the nerve pain. I am trying that.

Sleep- I am low on it, but the Dr. is increasing the meds to help with that.

Good news! I started aquatic therapy today!! It is going well! I LOVE the weightless feeling (really relieves the joints), and I put up with the sensation of the water real well (good thing it is *warm* water), the only thing that bothered me was the tile floor of the pool (with the allodynia in my feet! Eek!). The therapist was GREAT! He told me that today I could just start by standing/ walking against the wall of the pool, getting used to the temperature, and feeling. I couldn't believe how great it felt- and when I had to get out WHEW!-- I felt like I weighed a million pounds from the pressure on my feet! The therapist was helpful- he let me hang onto his arm for support, he let me take it at my own pace, and next time he'll consider adding small movements. He thinks that what I am unable to do (strength and motion wise) on land he can get me doing in the pool and then we can transfer it over- hopefully!

My home PT program is going well- I am resting more which is good for me!

My walking has been awful- when I walk I am SO shaky- my muscles jerk every which way! Argh. My Dr. says that when you're in pain, the muscles tighten in responce, and they are basically "guarding", in response to nerve pain. And then, of course- I have got muscle pain.

The swelling is improved a small amount. My Dr. is getting me compression stockings for the swelling- anyone use them? How did they help?

Thanks for asking about me- I love you all! I will try to be around more...

[frogga]

Heya...

glad you're around! and that the migraine has cleared up abit!

how is the ibu helping? does she still not want you under a neuro? I am really glad that pool therapy is helping you but... TAKE IT SLOW. you always forget that as you can do more in water you have to make a conscious effort not to overdo it. otherwise boom and bust cycle starts!

Best of luck with it and glad the jaw is still moving - even if it's not magically better!

all my love and PM you later!!

Froggsy xxxxxxxxxxxxxxxxxxxxx

[nikmcjo]

Sorry to hear about all of this happening. I hope you feel better really soon


As for the stockings, my ot made me use those. They hurt from the tightness and roughness, but they did help to reduce the swelling in my feet slowly but surely. They are still a lil swollen still, but a lot better than they were before.

Best of luck with everything

Nikki

[Jomar]

quote
[My neck is giving me a hard time. And I have major complaints of the back pain that feels like it is radiating into my stomach and chest! Phew- I would think I was having a heart attack from the chest pain, but it is just the major spasms from my back. That pain stops me from moving at all and makes me scream and cry! I hate it!! My Dr. is hoping that the muscle relaxers will help, and she told me to take ibuprophen for the muscle pain I am having on top of the nerve pain. I am trying that.
]

I might have asked or mentioned this before {brain fog} do you have TOS, Fybro or CMP also?
your description above sounds so much like what many with TOS have had and been thru.
CMP & Fybro I believe can get spasms too.
But I think Fybro and CMP have more all over symptoms.
It's been a couple years since I compared all of them.
Usually it goes like this certain activities = soreness, tightness, triggerpoints and then spasms
and usually there is a delayed pain effect- hrs or even a day or so after the use/activity

Does RSD cause spasms too?

[mollymcn]

Hi jo55 - you mentioned it has been a couple years since you compared all the neurological diseases. I wonder if it might be helpful to the community if you brushed up so you could answer questions about how these diseases differ from one another? These questions seem to come up a lot.

[InHisHands]

Originally Posted by nikmcjo

Sorry to hear about all of this happening. I hope you feel better really soon

As for the stockings, my ot made me use those. They hurt from the tightness and roughness, but they did help to reduce the swelling in my feet slowly but surely. They are still a lil swollen still, but a lot better than they were before.

Best of luck with everything

Nikki

Thanks, Nikki!

My Dr. did mention that with my allodynia the stockings are really going to hurt and are going to be hard to deal with, but she feels I REALLY need to wear them. Hopefully they will help! I felt the material of the compression stockings at the medical supply store nearby and they do not feel comfy at all- with allodynia nothing feels comfy though. I am not looking foward to wearing them but I realize that it is very needful!

What I hadn't realized was that with swelling you need to compress, not allow the swelling/ accomodate by getting fluffy (not tight) socks- get tight socks. Do not get bigger shoes to deal with the swelling- wear the smallest shoe possible. So, Froggsy- those black crocs are my friends no longer! Hopefully I can sell them, and get some money back- those aren't "cheap" (try $30!)... they are made very well, though- much better than the cheap brand of the same thing.

My compression stockings will be thigh length to try and not allow any swelling in both entire legs.

Originally Posted by jo55

quote
[My neck is giving me a hard time. And I have major complaints of the back pain that feels like it is radiating into my stomach and chest! Phew- I would think I was having a heart attack from the chest pain, but it is just the major spasms from my back. That pain stops me from moving at all and makes me scream and cry! I hate it!! My Dr. is hoping that the muscle relaxers will help, and she told me to take ibuprophen for the muscle pain I am having on top of the nerve pain. I am trying that.
]

I might have asked or mentioned this before {brain fog} do you have TOS, Fybro or CMP also?
your description above sounds so much like what many with TOS have had and been thru.
CMP & Fybro I believe can get spasms too.
But I think Fybro and CMP have more all over symptoms.
It's been a couple years since I compared all of them.
Usually it goes like this certain activities = soreness, tightness, triggerpoints and then spasms
and usually there is a delayed pain effect- hrs or even a day or so after the use/activity

Does RSD cause spasms too?

Hi, Jo. It does appear that I may have TOS (remember me PMing you and talking about it?)... but RSD has many of the same symptoms, too.

If I do have TOS than I believe I must have RSD as well. I definately have RSD (and if I am understanding correctly, you can't have TOS in your feet -lol-)... maybe I have TOS that caused RSD.

Well, I want to raise this question:
How is TOS treated?

I want to compare how the RSD is treated vs. how the TOS is treated.



I have an official diagnosis of RSD in both upper limbs, both lower limbs and RSD NOS (for RSD in my face, neck, back)... I have had progression of allodynia to include almost my entire body, as well as a bunch of other RSD symptoms in all areas of my body.

Now, with 4 different Drs. agreeing with the diagnosis and all recording that, I am not sure if I could ask any if I had TOS.

What do you think? Would you ask your Dr. if it was possible? Would most even be willing to consider it?

Does it matter? If someone agrees that I do have TOS, how will my treatment be any different than I am being treated now?

I am asking seriously, because I discussed the symptoms of TOS, etiology of TOS, etc with my mom and she asked me some of the above questions... like if the treatment is the same, then does it matter about trying to get a Dr. to diagnose TOS as well?

I'd love your input, since you yourself have TOS.

Anyone around that has TOS and RSD? I'd love to hear from you, too.


Oh- Yes! You get LOTS of muscle spasms with RSD! That was one of my first symptoms.

Also, what is CMP? I don't think I have fribo... unless I do, and the RSD caused it, and I don't know!

I am looking up fibro anyways...

Originally Posted by frogga

Heya...

glad you're around! and that the migraine has cleared up abit!

how is the ibu helping? does she still not want you under a neuro? I am really glad that pool therapy is helping you but... TAKE IT SLOW. you always forget that as you can do more in water you have to make a conscious effort not to overdo it. otherwise boom and bust cycle starts!

Best of luck with it and glad the jaw is still moving - even if it's not magically better!

all my love and PM you later!!

Froggsy xxxxxxxxxxxxxxxxxxxxx

Ibu helped a teeny bit...

I have an appointment to see a neurologist in 3-4 weeks. I really need a neuro, especially since the migraines started. I was going to get an appt. with one whether or not my PM Dr. agreed to it. I think a neurologist could really help me, as I do have some neurological symptoms, and I would agree that RSD is a neurological condition (as well as part immune).

Yuppers!, I am definately going to take the pool therapy slow. I know what happened when I didn't with PT... speaking of that, I am going to post later on about PT/ RSD and my conclusions after doing it for months in different fashions... I thought I had solid conclusions months ago, but that was because I believed what I was being told, and at age 16 when you are told something is going to "make you better" you believe it, because of course, the Dr. knows, right?! Specifically that post is for Frogga, Artist and Vicc... I don't have the time right now, but will soon.

Yes, at least now with my jaw I can eat "real food".

I have sooooo many thoughts I want to post, but I have to get all of my thoughts together (so many thoughts are swirling through my head, and I have been reading a bunch of RSD studies which are making me think, think, think and rethink!). I have so many things to catch up on (even here- so many posts since I was last on!!!!), and I have to try and get things done for the upcoming neurologist visit, as well as emails to answer, school, reading, whew!

I feel like I am progressively getting worse, having more problems and I am just going downhill with the RSD. I used to think "of course I'll be better", but that was because I kept telling myself that, because my Dr. told me certain things leading me to believe PT was "the answer" and if you just stick to it you will get better. I am staying positive though, and I am going to get through it- even if I have it the rest of my life! It is hard to be diagnosed with something that very well could be lifelong when you are just a teenager! You really just don't know what is going to happen to you! A little over a year and a half ago I would have NEVER thought this could happen to me (never even knew about RSD!) and I was a perfectly normal person... didn't think I had any health problems (other than a few allergies) and then I get some crazy neurological condition! I know that there is no proof that RSD can runs in ones family, etc... no, nobody in my family has RSD... but many in my family have neurological conditions (autism/ autism spectrum disorders, stroke), and I wonder sometimes if it isn't linked somehow, like I was prone to get a neurological condition. That might sound crazy, but I really really wonder.

I know some of the PT helped. My arms have improved function wise... and sensitivity definately! I had remission for about 2 weeks straight in my arms, too. Then with a boom the pain/ symptoms of RSD came back!

I definately think desensitization is important and I am continuing with that.

More later!