and i would definitely talk to that doc of yours and let her know what happened, too. she should know better! patients need medical supervision coming off these powerful meds - that is just common sense, in my opinion (and it is only my opinion). and hey, sometimes when we're taking that stuff (well, me anyway...) - we're not the best decision-makers out there, ya know?

i really respect you for wanting to share your story to help other people. i think that is way awesome and wicked cool!! you have already helped more TOS'ers than you can possibly know, barb.

what i meant by bone pain is the pain caused by cutting the first rib out. i have been told that if you just have a scalenectomy the recovery is not quite so bad as having a rib resection plus a partial and/or complete scalenectomy, for that reason. the human body does not LIKE it when 'dem bonez get sawed out by hot shot surgeon types!!! and it lets us know it, bigtime...

anyhoo, thanks again for being so open and generous with your tale. i do know from my own experience that it's helpful to learn stuff like how to treat the side effects (chills, diarrhea [sorry, ick], aches/pains, restless leg crap) caused by opioid withdrawal beforehand so that you can go out and stock up on stuff like immodium whatever, lavender bath oil - well you get the idea. ask your dr. to rx a clonidine patch for ya; that is pretty standard stuff (at least it is down here in the states). perhaps a call to a colleague more familiar with detox is all she'd need to be comfortable with the process...

when you're ready to jump off, i think the site i gave you might be a good source for ideas. or if you do it gradually enough you may not feel very many withdrawal sx at all. but i sure would tell your doc the trouble you ran into - i'm sure she'd want to know so she could help you with medical supervision...

it's simply not enough to just tell a patient it's time to cut back and then leave us to our own devices to figure out how to do it. post TOS surgery is kind of a time of crisis, if you think about it, mucker. we need tons of support from the people around us, and that absolutely needs to include our docs!!!

just giving you my thoughts, for whatever they're worth. i know you can take care of yourself - you're more than capable, i just happen to have some background with oh, shall we call it 'pseudoaddiction'? and thought i'd give you my 2 cents, that is all. you take care.

alison
"Be Brave"

I can't believe that this is a topic we really haven't talked about. I have had the HORRIFICALLY HORRIBLE AND DEVESTATINGLY NASTY restless leg syndrome. It was Hell to say the least.

I am shocked that the only info I can find on the net is about addiction information. Not that addiction information is not so amazingly important but what about the education for the rest of us who are legitimately trying to come off our meds????

I see this as me being a nurse with my education why would I not know how to taper off my meds....this is not the first event either....idiot I am....well....we are fine to educate our clients (as a nurse) but why can't i educate myself????? oh why oh why indeed.....

I am really shocked that our doctors leave it to us to go up or down with medications. When they know I am a nurse they say ok go up when you feel ready or go easy as you ease up....I am increasing my nortriptyline for my depression...........anyhooo......I am though to have the knowledge not that my pain is taking over my mind and that the meds I am on mess with my mind..... as does the dilaudid your mind Mucker......how can you calculate 2-8% decrease each week.....COME ON DOCTORS....we are left to carry the can....so to speak...

I am shocked and really ticked off that there is not more help with this issue. We as a collective need to get on this one. What can we do guys??? perhaps we need to talk to the coalition on pain in Canada and the American pain group...(forget the name...) maybe this needs to be on some kind of site or a place we can access it. I will look through my books and Marc's and see what I can come up with....

Mucker and Alison thanks for your stories. Alison your story is very important. There is so much information to be taken from your story and thank you for being sooooo brave to tell us about it and the necessity of it.

Oh and by the way bone pain is HELL and this is why I felt run over by a truck for the first three months post op scalenectomy first rib resection.

Much love to all,
oh and Thank God for you all and the lessons we all learn from each other. If we can save one person from one thing they don't have to deal with then I feel we have give our support as we could and should....on this 'support board'.

love again...
Victoria
Victoria

Hi there how is every one doing. As for me my arm is driving me crazy to day i have a sharp burning pain that runs part way down my arm and my hand is swollen like no buddy's business. The other strange thing that has been happening is my hands the past few days they have been hot as hell when most of the time they are cold and the color stays from whitish to blueish color. Now they are red with a pinkish in the middle of the palm area. It seems though that it is only me that feels so hot my boy friend says they feel a little warm to the touch but i swear they are on firer. Just like the feeling that is running down my arm and i have also been getting a sharp aching feeling right in my armpit but not near the scar. My pain pills are not helping with this pain at all and i thought i would try some ice but that causes even more pain. Cold has been my enemy since i had the carpel tunnel release. Heat doesn't seem to help either so i can only hope this does not go on much longer or i well have to go see the doctor and see if there is something she can do for me. I wish i could take antinflamitories i am sure they would help but with my stomach well i just can't bare more pain. So that's enough of that i did get some good news from comp now mind ya i have waited close to three months but they are going to pay for a water pillow for me and she said that they would rent a sit for the bath tub because i still get so dizzy. I was having to wait for my man to shower and take one with him which is great when you feel good but have to rely on him to hold me or help steady me really sucks. After a week of that i was getting fed up because i was having to wait for him all the time so he came up with using a milk crate and it works but not to comfortable but at lest i can have a shower any time i wont. Oh taking baths i can't get out of the tub because it hurts my arms and i have never been one to take a bath i always feel dirty soaking in my own dirt and i have to have a shower if i have had a bath. Strange i know just one of my little quirks i am also a neat freak ha ha. Well i have gone on long enough and my little puppy is looking for some attention so bye for now chat latter.

Thanks for the update.

I am a little concerned about your explanation of your pain in your arm and hand. Are you saying that your hand is hot or does it feel hot to you and is actually cold to the touch.

The pain you are describing sounds to me to be neuropathic and pain pills don't usually get to this type of pain very well. I have this kind of pain and I find that other medications are more helpful in dealing with this type of pain.

I hope you are not over doing it. I would make an appointment with your doctor to discuss your new symptoms...especially since rereading you post to see that your man doesn't feel the heat you do in your hand. This is likely nerve related and should be reported to the doctor. The doctor may have a better way of managing this type of pain and hopefully get you a little more comfortable.

I hope your little Chico is behaving himself!!

Take care and keep us posted.

love and hugs,
Victoria

Hi Gibbrn well lets see my hands feel like there burning to me but as far as to touch them they only feel warm. It is the inside of the hand that is on fire and the outside that looks red and in the palm area is pinkish. And fingers swell up like sausages I am starting to wonder if something is happening when i sleep because when i wake up my shoulder and part way down my arm aches like crazy and stays like this till i go back to bed. I am definitely am not over doing it because i don't do anything just a little typing on here. I do play with chico but it doesn't seem to hurt me any worse. It is really not long any ways like i well play for 10 min then maybe a hour later he wont's to play again. I have a appointment Oct 1st so i well just wait tell then and see what Bethune has to say. I can't see that i have caused any damage and pain well i have lived with it this long another week wont kill me i just hope he well have something good to tell me when i go in. Bye for now

but it is of course an issue...the concern is nerve damage....and if you are having swelling you could be lying in a weird position and blood vessels could be constricted......however in saying that your hand is only warm but feels like fire this is an issue....it could...and only could be a symptom of chronic regional pain syndrome....I am only going on what you say and I am of course not a doctor .... I am just concerned about you. If you can get in sooner then do......if not then go if new symptoms occur. If you find you are having new things going on ....the burning is there all the time.....or things are totally different then please go sooner.....

I want to give you a very gentle cyber hug!!! I just care and don't want to see you get into a nerve pain situation that can't be controlled due to it going on for a long time.....this could be compressed nerves and vessels from the way u sleep or rest or something.....swelling from surgery still causing issues/??? so perhaps a little massage to get the lymph system moving out all of the excess swelling....it is very very gentle stroking in the way of the lymph system and can be taught to your guy to do it....just take him to the MT with you and if your MT is good he/she will teach him how to do it for you.....

I hope this helps .....I don't want to see that you have to add another problem to your list....

Take care my dear and glad to hear that Chico is your playmate!!!!!

love and hugs,
Victoria

i don't want to alarm you, but the sx you describe - the heat, the color changes, the swelling, the burning, aching pain, etc. - it COULD be that your TOS surgery has triggered an outbreak of RSD (or complex regional pain syndrome, as victoria called it; same thing).

this, unfortunately, is not uncommon, mucker. you need to call dr. B's office immediately and let him know what is going on. start writing down these sx, keeping as careful track as you can of when, where and how they are occurring in your body. STAY AWAY FROM ICE (as i know you already are), as it can cause it to worsen and spread like wildfire. IF it is RSD. big IF.

you may need a stellate ganglion block to get this dx'd properly, mucker. if you have a positive reaction to the first block (i.e., it brings you some temporary relief), then a series of SGB blocks would typically be ordered to try and put the RSD monster back into remission.

there is a small window of opportunity in which to act. you are well within that timeframe, so no need to panic. and it may not even be RSD/CRPS, mucker. it may be nerve pain or vascular sx... things that got inflamed or stirred up by the TOS surgery.

but please do not wait until oct. 1 to act. this is very important. call dr. B. right away, as well as your other treating doc(s). if dr. B. doesn't handle SGB blocks himself, then very likely he will want to send you to a PM doc (usually an anesthesiologist) to do this diagnostic procedure STAT.

and for more information, you can go to the RSD forum on the neurotalk site. if i were more computer savvy, i'd throw the link up for ya right here on this post. but i'm kind of an idiot where that stuff is concerned-.

also, you could copy your post over to that forum and try to get some feedback from the knowledgeable and caring folks over there, barb. or even start a new thread on the TOS forum and entitle it RSD plus TOS SX? or something along those lines... i know we have some members who suffer from both dx's and they would be good people to help you right now but may not see your post on this thread.

i know beth is very up on this stuff, and not by choice! also, dawn (whom we haven't heard from lately - never a good sign!) carries both dx's and can help you if you can grab her attention.

again, i'm not trying to scare you. but your sx sound very much like RSD. i really, really hope that's not the case. but even if it is, there are tx's for your docs to immediately put into place - starting with those SGB blocks - to nip this thing in the bud.

please call them right away? and let us know what they say, OK. know that i care about what's going on with you and will do anything i can to help.

alison
"Be Brave"

Mucker,

I just read all of your posts, and wanted to say:

I had TOS for four years before my surgery. It took ONE YEAR for me to get any relief.

The relief I got was a break on headaches, and the color changes, inability to tolerate ice and other RSD symptoms went away quite quickly.

But we are all each different.

We are dealing with (most of us) invisible compressions / damage / inflammation and intermittent damage / of our nervous system, including the nerves as they go up into the brain.

My doc said, "please be patient, it took you a long time to get here, it will take time to heal."

Now, 1 1/2 years, the headaches are back (but is it the high heat and move?) and none of the RSD is here. I still have high pain - but not what I used to call the "suicide pain" which I used to get pre-surgery and was life threatening. I do have pretty bad fibromyalgia pain.

Have you identified your different kinds of pain and the different areas of your body?

Here are my thoughts, but they may be incorrect:

Skin burning like in a pizza oven, on surface, with sometimes surface knife stabs - that's my CRPS or RSD. It moves around, some weeks it's on my right arm. Then it moves to left. Then it moves to back of calves. Comes and goes.

Fibromyalgia - deep bone aching, deep muscle aching. Feels like bad flu. I get that on ankles, calves, arms, shoulders, back, hips. Comes and goes.

TOS pain - too many symptoms to list - but includes neck pain like I've been in a car accident yesterday - top of shoulder, shoulder, knife pain between shoulder blade and spine, middle of arm there is a big knot, little grape knots that form on back, spot by elbow, pain on forearm and hand and needling pain on thumbs, fingers and feet. These pains are constant, from a 6 to 10.

Just food for thought.

You will see benefits - I just KNOW it. Let your body heal...don't get too discouraged as we all know TOS has its ups and downs also...after surgery is very, very hard!

Hi i just wont to say thank you girls for your advice and info i appreciate your help. Now on that i am going to list what is going on i just wont to be clear and see if yous think it really could be rsd i have wonder about but none of the doctors have said anything about it. But if yous think i should ask Betune i well diffidently ask about rsd specifically. Here are the sytoms i had before surgery starting with fingers aching in all of them sharp pains in middle and on half of the pinkie also pins and needles The sharp pains not all the time also thumb and the fat part below the thumb aching some times sharp pain. The wrist constant aching with sharp pain that would be in the middle and sometimes it felt like a stabbing burning pain. Forearms very tight and aching all the time elbow aching as time went on upper arm start to ache then it moved up to shoulders to neck then down to shoulder blade. Oh just about forgot hands always cold and colour changes whitish to blueish and some times when i would shower they would be clear like i could see through and count all the veins that ran through. Now that the surgery is done i have aching and tightness in my forearm i am still getting aching in the wrist and elbow. Just in the past week or so i have been getting the tightness in my shoulder back. I still have that area in my upper arm that feels weired and a small part on my shoulder i don't even know how to describe the feeling. Burning in the inside of upper arm right to the armpit i do get burning at times in shoulder blade. Now my hand for over a week now my hands have been feeling like they are on fire and they have changed colour to red and pinkish in the palms they are warm to the touch. I get sharp pain on half of my pinkie and thumb as well as aching i have also been getting a sharp burning pain going up my middle finger. The fatty part of the thumb and the side of hand under the pinkie aching all the time. One other thing i forgot is i have had tremors in my right hand and arm about 6months after my carpel tunnel surgery i still have it but it now seems stronger and it last a bit longer then before. I do get in my left but not very often now i had one doctor say it was from carpel tunnel that is why i end up seeing other doctors because i did not believe carpel tunnel could cause tremors. Now that i think of it no one did say why i was having tremors tos i guess. So these are my sytoms i don't think i left anything out i have had no other pain any where else on my body oh ya head aches but when i was going to message therapy she got rid of them for me in fact she got rid of the tightness in my shoulders and the burning and she had started to work on my hands which seem to help a bit but then i got my call for surgery so we had to stop i well be asking Bethune if i can go back. Oh ya i did forget something my fingers swell up like sausages this happened before and now. Ok that's it and once again thank you for the help and the support god knows i need it. I have it from family and friends but even though i have not met any of yous it feels good to know that people out there still care and understand what i am going through and care enough to keep in touch. I have never felt so blessed before i just wish i could have realized this with out having to have tos. What a life i guess some lessons are hard to learn.

Quote:

Originally Posted by mucker This sounds like TOS to me: Here are the sytoms i had before surgery starting with fingers aching in all of them sharp pains in middle and on half of the pinkie also pins and needles The sharp pains not all the time also thumb and the fat part below the thumb aching some times sharp pain. The wrist constant aching with sharp pain that would be in the middle and sometimes it felt like a stabbing burning pain. Forearms very tight and aching all the time elbow aching as time went on upper arm start to ache then it moved up to shoulders to neck then down to shoulder blade. Oh just about forgot hands always cold and colour changes whitish to blueish and some times when i would shower they would be clear like i could see through and count all the veins that ran through. This sounds like a pulled ligament or pulled nerve. I had this - it went away after a couple of months. It was part of healing, they must have pulled it while operating. I think Beth had this.Burning in the inside of upper arm right to the armpit i do get burning at times in shoulder blade. OK - this is sounding like the beginnings of RSD to me.Now my hand for over a week now my hands have been feeling like they are on fire and they have changed colour to red and pinkish in the palms they are warm to the touch. I get sharp pain on half of my pinkie and thumb Neurological damage. May or may not be permanent. I have it if I push down with my ring finger - I can make tremors. One other thing i forgot is i have had tremors in my right hand and arm about 6months after my carpel tunnel surgery i still have it but it now seems stronger and it last a bit longer then before. I do get in my left but not very often now i had one doctor say it was from carpel tunnel that is why i end up seeing other doctors because i did not believe carpel tunnel could cause tremors. Now that i think of it no one did say why i was having tremors tos i guess. I find massage to be the ONLY thing that helps me temporarily. Even meds don't help like a gentle massage. If you can get these, I really believe they are both immediately comforting and lead to healing. Also, the lymph system in our body / skin cannot be ignored - I never want to get a lymph infection or blockage - those poor people!!! So yes, massage, right-on!!!So these are my sytoms i don't think i left anything out i have had no other pain any where else on my body oh ya head aches but when i was going to message therapy she got rid of them for me in fact she got rid of the tightness in my shoulders and the burning and she had started to work on my hands which seem to help a bit but then i got my call for surgery so we had to stop i well be asking Bethune if i can go back. Oh ya i did forget something my fingers swell up like sausages this happened before and now. Ok that's it and once again thank you for the help and the support god knows i need it. I have it from family and friends but even though i have not met any of yous it feels good to know that people out there still care and understand what i am going through and care enough to keep in touch. I have never felt so blessed before i just wish i could have realized this with out having to have tos. What a life i guess some lessons are hard to learn.

What meds are you taking that could help RSD? That's what Id' ask my doc. For me, it was suggested Cymbalta and Lyrica. The Lyrica caused diabetes in me. But what about Neurontin. That comes highly recommended. Please seek some help on the RSD, I don't want you to get the whole deal like I did.

God bless you little Muckity Muck.