Ihh
 

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

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.:hug:

Ihh
 

Yuppers

/agree with everyone

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

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!! :eek:

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!! :D 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! :hug: I will try to be around more... :winky:

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

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 :hug: :hug: :hug: :hug:

Nikki

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 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.

Thanks, Nikki! :hug:

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.

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...

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! :winky:

Hey sweetie..

firstly - it is rough as hell to get this at any time of your life - but I really think that getting it as a teen REALLY REALLY sucks - I also got mine at 16 - and dealing with normal teenage stuff and being RSD'd is hell. Pure Hell.

BUT, you can get through it. You say that you are worried this may be permanent - but it doesn't necessarily mean that your symptoms and pain levels will continue at this level. I know teens with this who have had a year of horrendous symptoms and nowadays, though they still have RSD and some level of pain they can function almost normally.. they just have to be more careful than "normal" people and avoid certain sports. Even with me, I am still on the "severe" end of the spectrum and you know how many RSD/ physical problems I have still have an increased quality of life than I had a couple of years ago. I am lucky to have been able to work holistically to mean I can study, go to uni and survive it!! (most of the time).

I am really glad the pool therapy is helping - stick with and aim for small improvements instead of an amazing huge recovery - could you set yourself a target to reach at the end of a week? even if it was only a tiny thing like being able to stand for another minute or be able to pour a kettle on your own etc... it's motivating when you discover that you can do stuff that previously you couldn't.

Migraines --> are the meds helping? During it what happens to your vision? I was talking about this with someone else i know with RSD and we have some suspicions that there is a form of RSD migraines. Mine drive me mad! hate the whole lying flat, silence, darkness thing.

Glad you are going to see the neuro! sorry can't be much help with the TOS....

I had more to add but can't think

how about tubigrip instead of compression stockings? I can't handle compressions stockings but I did wear tubigrip to reduce th swellings. I am not sure your doctor is being sensible about the shoes. Make sure that you soak the tubigrip/ compression stockings in conditioner over night (hand wash). Also, put them on in bed - because it will be easier and less painful (especially if you have elevated your legs over night)

Loads of Love and stick with it!!!!
Froggsy xxxxxxxxxxxxxxxxxxxxxxxxx

Thank you, Froggsy!! You really give me hope and help me to stick with it and keep on fighting! :hug:

I looked up the tubigrip and it looks like something that might work for me. I saw they have tubigrip for all different parts of your body. Thank you for mentioning that.

Migraines... the meds I was on were helping but they stopped working. I am going to see a neurologist sometime in the next two months to help with the migraines.

Vision changes with the migraines: I get some double vision. I get sooooo dizzy! If I am in a dark-ish room than I can open my eyes, but if not I can't see well in the lights because all the lights appear too bright for my head to handle. Right now my PM Dr has me on pain meds so I can come out from hiding... the migraine is a little better with the pain meds, and the RSD pain is a lil' better as well. I am okay enough with the pain meds to use the computer (even looking at the bright screen is okay).

That is SUCH a great idea about setting a small goal each week to reach! I am going to try that, as it is so easy to become frustrated and feel like you are getting nowhere with RSD. Thanks for the idea! :winky: I am loving pool therapy, and yes, I will set small goals to reach with that too.

Thanks for all the empathy. Being a teenager with RSD is SO hard! It feels like with me, when it rains, it pours!:rain: With the RSD and then the RSD causing migraines I feel so worn!!

I know, I might not be in as much pain a year from now, and with getting a neurologist he might offer me further options as far as treatment goes... but it is hard not to feel like this won't be my entire life, because of all the months and months that I have been in pain. Plus, things are getting worse and worse for me... the symptoms and pain are all over my body- I nearly have full body RSD! I just cannot believe how it keeps spreading and spreading and spreading! :eek:

When I first came here it was just in my hands/ arms/ shoulders. I am coping pretty well and sometimes you all here keep me sane and feeling like I can go on and I can keep fighting! I can come here and know that I am 100% understood and someone will come along and help. And I really really appreciate that! :grouphug:

Sometimes I feel like this::Crazy 2: (doesn't he look pretty dizzy?!)

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.

Yes I remember now- sometimes I get so many PMs I forget who sent what..:o

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.

You might read posts By tshadow - drs say hers has spread essentially to whole body.
Quite a few with TOS have RSD or RSD type sx- they just can't type or be online enough to participate on both forums - I guess it is a matter of where you made your "home forum " first too LOL.

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.

Like RSD, TOS can run from mild to extreme.
Mine is mild- so DC, PT, general posture work, stretching, heating pad, electric stim , ergonomics and awareness of arm uses works for me.

But for the extreme conditions - pain meds, musle relaxers, anti depressants, surgery, very cautious phys therapy , hot tubs, warm pools, posture work/awareness, massage.

I guess the main difference is if the shoulders are dropped or hunched or rolled forward or even if the head is tilted or jutted forward - these could be a cause of some of the TOS symptoms.

these postures make the brachial plexus area smaller and thus can pinch or bind the nerves or blood supply that flows thru the collarbone /neck/armpit area.
puffy or pinchy in the armpits could be pec minor compressions
constant tight neck or collarbone pulling up could be SCM or scalenes compressions or spasms
addressing the postural issues is a main tx
some have chronic trps and spasms - so that is a tx focus
and those that have structural anomalies in the neck area or larger than norm bones or ligaments - some will have extra scalene muscle or extra veins.
this is just a quicky overview..

In our TOS forum stickys I've tried to add all the polls , articles and symptoms from the forum threads and a lot of stuff on posture/alternative/ bodywork/triggerpoints/anatomy most of it is titled in sections by topic.
http://neurotalk.psychcentral.com/showthread.php?t=84

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?

I guess I would read as much as I could about it and then decide if it is worth asking them {TOS is just as mysterious as RSD}.

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?

the main thing I can offer - if some of the symptoms are from TOS maybe the posture /bodywork corrections will reduce some of the symptoms???
I just wanted to suggest it - just in case

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.

I miss you Ness

Vanessa
Hope you are ok....you've been in my prayers....miss seeing your posts
Jeanne