Hi, I also had the surgery in Oct. I was wondering, Do you still have alot of swelling? I just can't seem to beat this, and am in pain everyday. My Surgeon kind of makes me feel like I should be better by now, but my Phys therapist says I am doing good considering what i had done. I also get so depressed because I can tell alot of people think I am not that bad because I look good. I haven't filled the anti dep. med because I don't want to be happy that I can't function like a normal person... Anyway thanks for letting me vent... Caryn

I'm hoping all of you will have some relief of pain soon.

Siccy - vent all you want and need to- it does help to blow off steam about the frustrations.

gbsb- I just posted some electic stim {TENS/IF/Muscle} -info on the RSD forum- too often they do suggest to turn it up too high.

stim thread-
http://neurotalk.psychcentral.com/sh...ad.php?t=11560

Caryn - It's been posted at times that the anti D's assist the pain meds by working together- so you might want to fill the Rx and see if it works well for you or not.
One time I only filled a half order of my Lipitor - so you may not have to fill the whole thing to do a trial of it. So if it is a no go then you didn't waste the money on it.

Are you all sure you don't have some RSD involved with TOS also?
You can follow that link above and explore the RSD forum if your not sure about symptoms and such.

Thanks jo55,
I just read the thread about the woman whose husband just started using a TENS.
Sounds like I'm having some of the same issues other folks have had with it.
Have been using it on intensity settings between 2 and 5.
Funny thing or not so funny thing. My PT put my TENS together at PT yesterday.
We couldn't get anything out of channel 1 which was on my neck. I had it up to 45 when I decided to see if the cord was completely plugged into the device.
Pushed down on it and nearly jumped out of my skin. One must make sure those plugs are completely in before they ramp it up to a high setting.
Thanks for the info on it.
Thanks for suggesting looking into RSD. I've been here only a short time but I briefly looked at that yesterday and I don't think I have it. In the last 18 months I've had no discoloration or anything that looks different with my arm.
Also briefly looked into Fybro (spelling???) as two or three of my Aunt's on my Mom's side have it.

Hi Caryn,
I don't have anymore swelling from my surgery but the incision on my side and my armpit still hurt. If I'm laying on my good side and my cat walks on my surgery side I can only stand it for a few seconds. The area is still very tender to the touch.
My surgeon also acted like I should be better at our last follow-up. I told him I thought I might be depressed and was concerned it may be the hydro/oxy.
He said depression is normal after an invasive surgery and has prescribed more and more powerful pain meds.
As far as my friends go I know what you mean.
I'll run into them or see them a social gathering and they'll say I don't look bad. Also they'll start asking all kinds of questions.
I'm not sure what they expect. Should we show up in a wheel chair or crawling on the ground with tears in our eyes, complaining about our pain.
Frankly, I don't think they'd want to be around me if that's what I was doing.
The best thing they could do is say nothing because I just try to be happy and put on a happy face when I'm around them as I'm happy to see them.
It'd be nice to be just treated like everything is normal if only for a few hours.

gbsb- many people have posted that it can be useful to wear a sling or other assistive device in public. It can do a few things- 1, it can help you rememebr not to overextend yourself. 2, it offers a visual clue to others that something isn't quite right.

The other thing is some advice that many have offered previously in other threads, and that my therapist offered straight to me which is that how you present yourself is very important. I wish I could say more but my dragon is acting uip and the baby is crying...grrr...
I'll be back.
keep your chin up.

OK, lets see if I can get this out before she comes back... nothing like a game of chase with a toddler.

What I mean to say is that if you put on your happy face for people, you present yourself as feeling much better than you do and they come to believe that. We all do it, it is human nature to hide some of your suffering and present yourself as well as you can in a social situation. It is a problem for most people here with friends, family, and spouses/significant others. It is very important for you to find a constructive and factual way to say " well I don't feel great but I am here doing the best I can" and hope that people who are your true friends will understand. There are lots of good ways to convey that message without whining about it. My husband always tell me to just "stick to the facts" It is a good motto.

My favorite answer I think came from Wittessea on another thread (sorry I didn't look up the link)- "I am not feeling any better or worse"

I also often use, "I am getting by", "today is a [good/bad] day"
My boss is getting accustomed to my 'good' weeks and 'bad' weeks.
My 3yo can even tell people that my arms hurt and usually rememebrs to be gentle with me. I am also not past making my self look much more pathetic than I feel when the time requires it (like askig for a carry out at the grocery store). Or passing off a "I know I look OK, but my arms are actually quite defective" And giving a generous and heartfelt thanks for the help.

If what you want is for people to just bug off, you can also say- "well today I just wanted to forget about my arms and have a good time"


It is hard, and the wrold is not out to get you, but remember that people are generally stupid. They are used to interpreting exactly what they see and not lookign to read between the lines of your words, actions, or expressions.

At any rate, there are some good older threads on this topic, and I am going to have to run...maybe someone could pull one up?

I am sorry that you feel so crappy..believe me, I understand.

and the Francinator is back, demnading to be loved, so I must go now.

best to you
johanna

Can I add some thoughts and respond to others comments??

Siccy, I am so sorry for your physical and emotional pain and frustrations. I'm glad you come here to share your feelings and concerns, I think the others are right in that this is the place to come and vent and have other people know what you are talking about. TOS and RSD are very difficult conditions to deal with. It is devestating to get the diagnosis and then find out that so little is known about treatment and then that treatments can vary so. I went through 4 Dr.'s before I found one that could diagnose me and then on to another before I started getting any relief from my pain.

I went through all kinds of medicine changes as well and each one takes its toll on your body. Those changes in themself can cause depression symptoms.

As the others have said, Hang in there... better days will come. I am 1 year post op. and the swelling in my neck and arm went down at about 6 months. Then I began to feel some what better. It's a long hard recovery, I will have good days and then feel like I have regressed.

I had to learn to pace myself and let alot of things go. I had to recognize that I am not the same person I was before and may never be that person again. That's me,and what works for me.

Financially, there are some places you can turn. HubbywithRSD mentioned some sites on the RSD forum that offer financial help. Also Joni Erickson Tada has a foundation that provides wheel chairs for those in need, and helps with finances I believe. Keep searching for financial help if you can, it is definitely out there.

And keep coming back to the forum. There are people here who care about you and want to help and support you.

Flippinout, it is good to see you back!! I hope things are going well for you.

gbsb, I can't use the tens unit. It just makes me worse! It really flares me. Dr. Ellis says thats not unusual, alot of tos'rs can't use them, so if lowering the dose doesn't work maybe move on to another form of treatment??

HeyJude5050, the quote that you are never given more than you can handle is from the Bible. It's one that gives me comfort on those really tough days.

Dawn,Jo55 and Johannakat all have really great advice (as usual !!)

I too want to welcome those of you that are new to the forum and I hope that you can find answers as well as encouragement here.

Take Care All,
G ~

Gromily,

I did know that quote is from the bible and I do believe it is true. I was just trying to lighten things up a tad. I try very hard to never ask "why me."

I do have bad days but I know that things CAN be worse.

I do know people who could not handle half of what the folks on here deal with on a daily basis. That is probably why they don't have the same burden.

That is also why I shared the Strong Woman card on the site. It reminded me of everyone on here. (men too).

God bless and take care,

Judy

A month of two ago we had a discussion about what to say when people ask how you are - it seems alot of times its just to be polite. One of my favorite answers (one i've now adopted as my standard answer) is "no better, no worse." Then if they are interested, explain/expound away. but yes, it is frustrating when friends/co-workers - the people you see day in and day out- look at you like nothings wrong - you must be crazy.

Thanks for your support.I really needed to ventand know Im not alone.I used to post on the old forum every now and then.I stopped when pc crashed.I am
going to doctor soon to see if I can get some counceling.Its been six years
for me with tos and rsd.
I guess reality set in when doc told me to quit chasing my rainbow.
Somehow I just cant accept Im not going to get rid of the pain.I have tried to keep positive .Maybe god wants me to slow down .Changing my direction and it will have its purpose.I have always concidered myself somewhat strong.But Im bending.
How do your families (kids) deal with your limitations?My daughter thinks I
am an alien.She clings to me.I feel like I let her down in so many ways.
Sometimes I feel like her and my husband may be better off without me. Anyone else? I love my family but I feel like I am altering there life.
I push myself hard to stay on top of things.What use to come so simple
isnt anymore.I try not to complain.
Again ,Thank you for the support.
Siccy