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| Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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09-06-2007, 08:46 PM
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I'm so sorry to hear you're still dealing with such TOS pain and that the dr. doesn't want you to be on anything else for pain. I'm just going to throw something out here, and I may be totally off base, but just out of curiosity, I wonder if being on something separate for nerve pain, such as Neurontin, would help? If you're getting pain meds through the pump and still having TOS pain and terrible headaches, I wonder if something like that might help? I know when I was dealing with the terrible pain from intercostal neuralgia, none of the narcotic pain meds would touch it, but my PM dr. put me on Neurontin and I finally got relief. Just a thought.... 
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09-07-2007, 10:44 AM
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Nerve pain. I have been taking percocet for months now and i just seem to increase the dose because pain is always there. My doc is going to try topomax but I have to have blood work done first and, I hate to say, haven't had time. 4 kids, 4 different schools, 3 different sports schedules. Doctors appointments for me, kids and husband had mri today. He has to take valium when he goes so I took him. Then 4 year old to doctors.
Husband issues I understand. Right now he is great but after my surgery it was also, when are you going to work?? Also, after I was taken off all meds I was ill for about 2 months. Couldn't get out of bed only to take a shower, make frozen meals. He was so unsympathetic I contemplated divorce. I had told him to leave a few times because he was so mean. I then realized, he didn't know how to deal with it and since he couldn't fix it he didn't understand. He refused to go to therapy with me because he felt it was my problem not his. For the past 5 years, everything has been great. we have spoken more and whether he gets it or not, he's more sympathetic. It's tough when your'e ill. When you don't look sick but you want to lay in bed all day. Cooking dinner is a chore. making beds, laundry, blah, blah, blah. Last night I had a major break down crying out of frustration over everything. Life itself. Luckily my hubby was very helpful but I still don't feel great. Sorry, trying not to cry now, what a wimp! |
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09-07-2007, 01:38 PM
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I hope that you don't worry about crying. I do it a lot and it is necessary to let the bad out so you can at least feel a little better. I hope this is a regular cry!!
I find I can't take marc getting upset or not understanding why I don't feel like going to a movie or for a road trip. he too doesn't get it. he can't fix it so he can't understand it. Men need to fix things. He keeps saying that he wants a list of chores that need to be done....he can't see dirt  not at all!!! He is a man and I love him as he is and he is very loving but sometimes men just don't understand how to show it either. So keep your tears flowing they ARE therapeutic. I love mine.....not when I am doing it but after when my guy tries to make the most horrendous jokes to try to make me feel better...sometimes I want to smack him but others it helps. It shows me he cares....I digress..... ONE DAY AT A TIME as my union rep says don't put the cart before the horse. I hope you are able to keep your head above water! many many hugs! Victoria
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How poor are they who have not patience! What wound did ever heal but by degrees. . |
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09-07-2007, 09:04 PM
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I was in a massive flare yesterday...with a migraine to boot. I crawled into the shower, turned the water on as warm as I could handle and just sat down in the tub and cried...I just kept wondering - WHY? Why the pain? Why doesn't my insurance company understand? Why doesn't anyone understand? The tears helped...the pain didn't go away but I felt better and could smile for the first time that day. I think sometimes we all just need to let it go...tears can be theraputic.
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09-07-2007, 09:12 PM
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One day my 4 year old daughter, Erin, was crying for what I thought was very minor issue. I asked her why she was crying and she said, sometimes you just feel like crying. That, I told her, I understand. Unfortunately for me, the last night cry was a complete mental breakdown. I do feel better mentally today but just overwhelmed. I know we all do need to cry. Sometimes I do without even realizing tears are flowing. But, I am normally, always happy on the outside. The breakdown was my frustration on the inside. Thank you, all of you, for your understanding and support. I really don't know what I would do without you.
Also, Yeah! Football this weekend! Linda |
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09-08-2007, 12:44 AM
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#16 | ||
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Right from the title of this post, i fit in so well, the tears, problems with insurance, the horrific pain, flares from he!!, men who want to fix our pain and get so frustrated because they can't, migraines on top of the pain.
Yeah, I look forward to football too. It can take my mind off things. I don't have to care for one child let alone 4. I guess we do what we have to do, but when you just can't get out of bed....or cook....or go out of the house, you haven't gotten dressed for days and ..... the one that made me feel someone really understands was "Men who can't see dirt" Oh, I'd love to read a novel on that one. at least it made me smile. we seem to be so different yet the same. All have a common denominator or is it dominator - pain I hate it and I hate complaining about it. It was much more fun being the nurse, eh Victoria, you think so too? Maybe it is the fall weather that has gotten to us already~? Thanks Redjpw....neurontin sounds like an excellent idea. I took it a few years ago and after a week my face was so swollen. when i went off it i lost 5 pounds overnight. I could try it again> i tried other drugs in that class. Couldn't tolerate them and they didn't help. What helps a strangled nerve? Johannakat I hope next week is better. Withmore, i haven't forgotten this is your thread and what you are dealing with....it seems you have a lot of company. too much company. i hope you are doing a little better now the week is over.. take care all and i hope the pain levels for all of us take a dive.... Hope |
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09-08-2007, 03:10 AM
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Hope, Hi yeah for sure I wish to be back nursing my patients who have pain not me being the one in pain but treating their pain as I was soooo good at I LOVED MY JOB...and my pts all had cancer!!!!!
LinJane As for neurontin....what about lyrica as something to think about for nerve pain(it has really good results for nerve pain and has been considered by many pts who take it to be better than neurontin. Make sure you are aware of the side effect of in-orgasmia....it is rare--on the bottom of the side effects list but if i was having massive nerve pain THAT bad I would go back on it in 2seconds. I chose to come off it for tht reason as my nerve pain was not as bad and my se& life was more important to me. topamax is also a seizure med as well so one or the other...only one I think !!!!!!!!....Marc (DH soon I hope...still waiting for a darn ring!) anyhow....Marc says depression is anger turned inwards.....hence let it out as if you don't then you will end up depressed and totally frustrated....who says you hve to be happy all the time MOM.....yes you CAN have off days....just say the nice things to your babes as you normally would. It may change how you cope. Let our your feelings out....it is a good thing to do. When I cry it usually is a total breakdown and it just releases all of the stress I am carrying around with me and have not coped with. I yell at Marc and scream at the cat..sorry baby kitten....scream at life and at me for my perceived ineptitude. I am letting it all out as I keep it in and have a happy face too.....but the stress is very internalized and I try not to bother people with it. sooooooooo the frustration builds up like a boiling kettle and booooooom it overflows. After the storm I feel better able to cope again with daily life and then break things down to easy to cope with pieces and pace myself. I hope this helps! this is just my way of dealing....all the work crap all the compensation crap all the pain crap all the LTD crap all the financial crap.......lol Love to ya'll Victoria
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How poor are they who have not patience! What wound did ever heal but by degrees. . Last edited by gibbrn; 09-08-2007 at 03:19 AM. Reason: boo boo |
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09-08-2007, 09:20 PM
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Victoria I don't know why, but pain has gotten so bad. No sure how to deal with it. I posted somewhere else that I am doubling up on meds. Don''t know what else to do until I can call the doctor on Monday. I don't want to go the the hospital.
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09-08-2007, 11:33 PM
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 hi I just wrote a huge post to you in the other forum is gone....it got lost in computerland....don't double up if there is tylenol in your med DONT DO ANYTHING until Monday and go to the doc then if you can hold out. Take ibuprofen if you can but make sure u eat with it. I hope this helps... I MEAN IT ABOUT DOING NOTHING.....YOU ARE AGGREVATING YOUR SYMPTOMS AND PUSHING THINGS FARTHER THAN YOU SHOULD on monday get a long acting medication that will keep you at a balance and even keel and then you will have(hopefully) better control of your pain and then take a short acting med if you need it. Am I correct in saying that you have percocet....so oxycontin same drug no tylenol may be a good starting point or alexa...long acting morphine. I hope like hell you can not do anything for a while.....til monday at least!! I want you to seriously...I MEAN SERIOUSLY do nothing nothing at all!! love and hugs, Victoria
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How poor are they who have not patience! What wound did ever heal but by degrees. . |
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09-09-2007, 01:56 AM
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Hope- thank you...withmore, sorry to gripe on your thread. i had some rough days last week.
I am feeling better today...maybe it is cause my Galaxy finally won a game tonight? In any case, I specifically told my DH i could not get the kids to and from school, so he took it over for a while. we have definitely had ups and downs. and I scream at him all the time when i am frustrated....glad to know I am in good company with everyone else. hubby tells me that once i start screaming, I communicate what i am actually feeling much more clearly- and then we can get to the root of a problem easier. i always thought he just listened better when i yelled louder...still not 100% sure who is right  i want him to read this thread just so he can see i am really normal- just a typical woman he seems to think I am not, that I get angry too often and I should read books on the subject to get better about it. men- no, they can't see dirt. lol.  ah well, hopefully calmer days ahead getting our houses cleaned and kids cared for. Lin Jane I am right there with you, as the little kids started a new school, my oldest's soccer season just started up- so that'll be two travel games a weekend for a while...galaxy season still going on (we have season tix to those...dragging the wee ones to late night public events!!), and my husband cracking down on the budget (i find food to be either time or money invested...buy it pre cooked for less time and more money...or fresh ingredients but you need time and effort to turn it into dinner) so groceries and dinner are more work for me....blah, whatever, it'll all be OK in the end i guess. wish i had a hot tub...o wait, can't go in one with my stitches. can't wait to get my stitches out ! another 10 days or so... warm thoughts to you all Johanna
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