Can u come to our get together?
Love to have you & the family!!

Where and when? Thanks for the invite. I live in Florida.

Thank you so much for the reply. Okay I will keep the appointment....I feel that the Pain Management doc is a good one because I was referred by a friend of my neighbor. She said he is wonderful! So I will definitely keep him. Lets see what he has today oops I meant to sayLOL. I am just so grateful to finally be getting some help. I was miserable and I felt like no one would listen to me. All of you have been wonderful! thank you so much.

The get together is in California.. more infohere-
http://neurotalk.psychcentral.com/thread53646.html

One more question about symptoms. I am having an extremely fast heartbeat. Did this happen to any of you? The doctor did an EKG when I was there the other day but nothing showed up except my heart was beating really fast. He didn't seem too concerned but that is when he ordered the arterial ultrasound. This is just a nuisance on top of all of the other symptoms. Now the pain is getting so bad I feel like I have to hold my chest all the time.

I had a bout of weird spells of quick heartbeat along with dizziness/vertigo, one spring.
I got it checked out and dr did full blood work and exam and felt it was in my case just a very odd bug.. sx faded away after the testing and exam.
So she must have been correct.

But for you it could be from spasms of your pec minor & major or could be due to the cervical rib compressions. or a mix of both...

at times some of us have had spasms affecting the chest so bad that we thought of heart attack and some went to ER for check up.

I had that feeling one time for a few days and it was scary but I was totally locked up with spasms in my upper body.
Luckily i found my chiro not too much later and he rescued me from those spasms

Hey it's me again....I am barely able to type at this point. My condition seems to be getting worse. I am really going to lose it. I am so upset right now because I am in the worst pain of my life(and I have been through three surgeries and a lung collapse) and it seems to just be getting worse. I now feel as though there is a knife stuck in my back my chest is caving in and I can't even brush my teeth without my arm being dead. I can't even sit up straight I have to slouch over or it feels like the knife is going further in my back. These doctors won't prescribe anything strong enough to deal with my pain. I have Ultram which I have to take 3 at a time just to get some relief, I have feldene which upsets my stomach, and now he gave me cymbalta yeah this stuff doesn't even come close to relieving my pain. My depression is not causing my pain...my pain is causing my depression. If they could get me out of pain I would be okay. I wish these doctors would understand that I have a household to run, I have to work and my children need me...if I can't even take care of myself how can I help them? It is really frustrating me and I am on the verge of insanity......I go to sleep everynight hoping that I don't wake up because I don't want to go through another day like this.

Any advice on how to get these doctors to give me something that works to end this misery? I am going to tell them to just take this damn rib out of me so I can get on with my life!

Thanks for listening sorry about the long crybaby story!!

I'm so sorry the drs aren't following up to get your pain managed better...

Some members have had a relative call the dr and describe how the pain is affecting a loved one. Or have someone go to appt with you to help verify to dr that high pain really affecting you.
{ some spouses/family member have "gone off" on the dr about it, to really get the point across}

Sometimes the addition of a antidepressant helps the pain meds work better.

Keep after the drs to get your pain managed - have they done any vascular/blood flow testing yet?
To see if the rib is compressing the vein or artery?

I have been in a similar situation...not wanting to wake up as it would be the end of your world which would be good considering your pain level. I hear you on that one...I think we have all wished at one point or another that we don't wake up or we drive off a cliff...etc etc.

I hope you see your pain doc soon. It is a good idea to take a partner...husband or boyfriend(don't know your situation) with you to the doctors so that you can really get them to understand the pain is the issue not the other way around. I have taken my dh with me many times so the point goes across. You need to be articulate not just crazy about the pain....which you are we all are...but you have to be calm and tell the doctor clearly that it is destroying your life...that you have no life and you are ready to kill yourself if the pain can't be controlled....not like that however....my doctor understands when I say to here that I wanted to kill myself the pain was so bad..that is how she knows how bad it was I wanted the only escaped possible to me at the time....death.

It doesn't help to tell a new doctor that....only one who REALLY knows you and knows that this would have been your only means of escaping the hell you are suffering.
fill this out and take it with u to the doctor go prepared for anything.
http://www.google.ca/search?q=words+...ient=firefox-a

http://books.google.ca/books?id=YAXD...um=9&ct=result


ALSO
You need to cut back on what you are doing to run your house. You are making yourself worse. I understand there are things to be done, but you can only do so much. The more you do the worse you become. You need to figure out what MUST be done compare to what should be done. You will literally burn out and cause much more damage if you do continue as you are.

Yes you have a house to run, are your kids old enough to help you??? If they are get them helping you. Every little bit helps....the folding of laundry(kills me) the ironing.....etc.... get friends to help where you can.
you must not continue this way or it WILL get worse. The most difficult thing for a tos sufferer to get is that you can't do things you used to do!!!!! YOU NEED HELP. that help can come from anywhere...but you need it asap. you will only be worse and in more pain if you continue. You must know what a day does to you.

I don't know if this helps....it is all I am trying to do....but if you can't find a way to stop what you are doing it will get worse even if you do have the meds. I have strong pain meds and still need to have a house cleaning service...costs a lot but I HAVE TO DO IT. I can't clean. My partner Marc does his own Ironiing and I barely do mine unless I have to. I bought a steamer it is great....like the department stores use to steam out the wrinkles on their new clothes they hang up.

You certianly need pain meds and you need doc's help, but you will have to alter your lifestyle as well. Heat is your best friend. Get heating pads and use them on your back it helps with the muscle spasms....get ice packs for the back of your neck when you get headaches or migraines.

I'm sure somebody has a list of things to do to get help or to do instead of regular ways to do things.

I hope I am getting what I want to across to u. You just can't do things the way u used to you have to change your lifestyle and try to calm your pain down.

my heart aches for your pain!!!
much love and hugs,
Victoria

A couple of comments from my long search for good pain relief:

1) narcotics don't work that well for TOS pain. a moderate amount will help if you have moderate pain but for severe pain they don't really help that much usually. The non naroctics are often more effective but they can take 1 to 3 weeks to reach full efffectiveness.
2) antidepressants are prescribed for pain not just because pain is depressing but some of them actually work on pain. In general, for most people cymbalta and/or effexor are the only ones that really work on pain. SSRI's like prozac generally do not help pain. Elavial works for some people.
3) medications for seizures (I have no idea how to spell that word...) like neurotin, topomax and medications for heart arrythmias (another word I can't spell) like mexitlitine also work really well for many people.
you have to go up slowly on these meds and it takes awhile as well for them to work.

People vary ALOT in side effects and which meds in a particular class work on them. A good pain management doctor will work with you trying meds until you find some things that help.

I know it's frustrating that there is not instant relief but with time, a good doctor can often really help. A few people I know have reached the point where nothing helps because of the severity of their central nervous system damage but the vast majority of people can be helped at least to some degree and often to the point where their pain is manageable most of the time. Hang in there, it can get better.

Jo is right as well that, as hard as it is, you do have to work on ways of doing things to reduce how much you are irritating your hands. It seems impossible at first but gradually you will learn all kinds of tricks to help.


If you don't have RSD, prolonged hot water immersion (like 20-30 mins in a hot tub or just a bath run hot) can sometime really help bring down the pain when nothing else will. I used to do that once or twice a night when I was at my worst and it was the only way I got any sleep.