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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 03-26-2009, 05:46 PM   #1
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US miss HB User
I want to cry

New pain clinic visit was today, Yeah!
I go in, do all the paperwork and get in. The nurse guy is examining me and says they see a lot of RSD and no way could it be that because after 6 months my leg should be black, I couldn't have painted my toenails or shaved my leg either. I explain to him that it does change colors, I'd painted my toes 3 weeks ago and the nails haven't grown a bit and show him the one that is chipped, explain they will chip like that for a while and then not chip. I also mention that I've had four people confirm the diagnosis.

He asks if I've been checked for rheumatoid arthritis. I say yes, when my fingers started hurting my doctor ran the blood tests and they all came back negative.

He starts in on the back as I've marked my shoulders and sacroiliac joints hurt. I said my back doesn't hurt, my hips and pelvic bone over to the spine does but the back has never hurt. People keep putting it into my paperwork but my back is fine. Yes I've had MRI of my lumbar spine and sacrum and other than some minor something at L4 L5 I think, there is nothing wrong.

He tells me that if it is RSD that it is mild, I need PT 10x a day 5x a week for 8-10 weeks and I'll be cured. (I know not bloody likely but at least they are offering something) I say I have no problem and do home PT when the pain lets me. He says I must do it there and I explain that the $15 copay doesn't seem like much to him since he has a job, but I have no income and it adds up fast. I then explained that I spent $50 in copays yesterday alone, light strikes his brain! He then says he would hate to see go down the disability road due to lack of money and maybe that's why they sent me there since I can run up a bill and it will eventually get taken care of (by me I'm sure). He's sure there's no way it cold be RSD and is pretty sure that it is the tendonitis still and I should do the RICE thing but he'll get the doctor.

Doctor comes in and I have to go through the fight about the antibiotic causing it all and he tells the nurse man that I do have it in both feet and the thinks we need to do injections and PT right away. There's no way the rest of the pains including the sacroiliac could be RSD.

I'm ageeable to this as this is what should have been happening all along. Not injection, go home, injection, go home. Go to PT until the sacroiliac is better and we might see you then. They do injection and an hour of PT 8-10 times and that is where they start. Doc leaves and nurse comes back with paperwork. I ask what I need to do to make sure this is covered by my insurance and he tells me the girls at the desk will know what to do.
I then ask about my medications. I'm on morphine and baclofen from the pain clinic and I have a contract with them, will they take over the medication care? Oh no, they don't do medications there, just the injections ***??? (Sorry about the language there but I can't express that any other way) My pain doctor should have no problem still prescribing them. I explain that I can't get injections or narcotics from other people due to the pain contract and I'm pretty sure injections are included as they do them there and my current doctor won't do them as I'm "too anxious". Then he gets on the aren't you breaking your contract by just being here, isn't that unethical. I explain no, I just got a consult, I didn't receive any treatment and I'm allowed to do that. As long as there is no treatment, there isn't violation of the contract. I didn't get any pain medication or relief from them. I'd done it before and the last one said I was schitzoid. He gives me the papers and tells me I'll have to decide what to do, but I need to find someone to manage my medication since the PAIN clinic won't. I can leave the paperwork up front and they will keep it if I can get my medications straightened out.

I called my primary care guy and left a message to see if he'd be willing to take over the medication issue while they were doing that. Explained to the nurse what was going on, she called me back, wanted to know who I'd seen and said they'll call back. (I think he wanted to know what was going on and to make sure I was willing to have the treatment since I've resisted the stimulator so much and didn't feel safe with the arthrotec. I've explained to him that I want all options exhausted before the stimulator happens and I'm open to treatment. I just want medication risks discussed with me first and all options exhausted before surgery)

I'm so upset, someone will finally at least offer some treatment and I have to go cold turkey withdrawl on the morphine and baclofen to get it. Doesn't seem like a good idea since I would not be allowed to stay here if I was going through withdrawl, that has been made perfectly clear. I guess I can always go live in my car, but then wouldn't have the driver for after I get injections.

I just want to cry!!!! I'm about to go into the pain clinic with my fake happy face next week, lie and say I'm cured of my anxiety and let them do the stupid stimulator and hope the antibiotic reaction alone will kill me, hey maybe I can get more Levaquin. I can't deal with this anymore and at least that way nobody can say that I killed myself and nobody will have to feel guilty over it. The doctors seem to think I am an idiot and know nothing about my body and I've had enough that death by doctor's stupidity is good enough for me.
Sorry needed to vent and I'm really considering caving on the stimulator and hoping it kills me period. It's just that my back is the one thing that isn't hurting and I'd like to keep it that way, not to mention that I've never met an antibiotic my body liked. Oh well c'est la vie, c'est la mort, as long as we can get our kickback from the stimulator company, who cares right?

Last edited by US miss; 03-26-2009 at 05:49 PM.

 
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Old 03-27-2009, 06:33 AM   #2
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Join Date: Feb 2009
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lunadoeeyes HB User
Re: I want to cry

Hi Alice
Hay you can not give up like that. Keep talking the the docs. Keep trying to find one that is not a moron. As you already know the more you get upset the pain level goes UP. Go to that "happy place", I know yuck, and get on the phone and contact more offices if the receptionist is has not a clue then the office does not see many of us. Tick it off and make another call to the next on the list. If it to much take a brake. I though I read a post from you that you now have a mission to inform the world......
Hay breath take a step back and try again
Peace and HUGS
Pamela

 
Old 03-27-2009, 07:06 PM   #3
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Gaollan HB UserGaollan HB UserGaollan HB User
Re: I want to cry

*Hugs* Hun, just lots of big hugs for you. Thank you for coming here and giving us some of your burden. I hope today was a better day for you. Never, ever give up!!!! We're here to help prop you up.

Love and Hugs,

Karen

 
Old 03-27-2009, 10:08 PM   #4
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US miss HB User
Re: I want to cry

Thank you, I honestly don't know what I'd do without these boards. I hate going out anymore. I twitch, jerk and shake and am quite frankly sick of the stares. I know I look like I have Tourette's but didn't your mothers teach you it isn't nice to stare. This is pretty much my contact with the real world other than the doctors.

Today was better, no doctors. Lots of pain because nurse guy was not nice to my legs and feet. When I'm on that much morphine and still trying to pull away from you and you're leaving thumbprints in my leg, get a clue. But no primary care guy offering to take over my medications either so I guess the new place that might actually at least try to help is a no go.

I really don't want to go and see the PM guy next week. He'll be mad if he finds out I went for another consult and I'm waiting for him to drop me as a patient, even though I didn't break any of their pain contract laws. Only one more in the area I can try to see so I'm calling their office and seeing what they do and maybe trying for a referral to them.

 
Old 03-27-2009, 11:20 PM   #5
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Join Date: Aug 2007
Location: ca, usa
Posts: 197
tigerlily11 HB User
Re: I want to cry

Alice,
It's OK to retreat when you're going through so much and are so exhausted and in pain. But please keep in touch with at least one person you can talk to on the phone or in person..a friend, your psych doc, just try and keep a connection...and of course all the people here on the boards who care for you and are there with you in thought and heart!!

Hang in there Alice,..one step at a time, moment to moment..try and remember all the skills you have about breathing, and relaxing..I know it's so hard...I know you won't give up because I know you're a fighter..I can tell from all your posts!! You're amazing with all that you've been through, your spirit still shines through in your posts..dig down and find the strength..and when people stare, just remember we're there walking with you..
Sending big, huge hugs
Tigerlily

 
Old 10-10-2010, 10:30 PM   #6
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Join Date: Oct 2010
Location: Princeton, WV USA
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RSDSufferer HB User
Re: I want to cry

oh sweetie, I hate that your going through this, your post tore my heart up to pieces, your best bet is to find a new doctor, in Charlottesville Virginia, they have the best pain management place I have ever been to and they are excellent for what they do and they care so much about you, its called UVA.

don't stop fighting, and don't give up, we are all behind you on this

good luck and keep us updated!

 
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