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    Old 01-15-2009, 05:57 PM   #46
    Dragon95
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    Re: RSD so many questions

    Hi everyone, I wasn't sure where to start a new post topic so I thought I would place my post here as it seems appropiate. I've had RSD/CRPS for 7months now in my entire right leg and foot, I also have it in my lower back. Unfortunately I woke up one morning getting ready to go to work and I could barely get out of bed because when I woke up that morning I was in agony and couldn't walk. I don't recall injuring myself, though my PM doctor says that it could have been a very slight move the wrong way, though i'm not sure I agree with him entirely. I'm writing because I am looking for a new PM doctor in the WNY area: Buffalo,Rochester, erie PA is acceptable as well. There are things that I like about my PM and things that I don't like and I would like to see a PM who is more well rounded and have me doing something rather than not doing PT or anything like that anymore. He has me on nerve pain medications but nothing to keep my pain under control when I need it which is usally 24/7. He perscribed me breakthrough pain meds which cost a fortune and my insurance company wont approve and when I asked him why he wouldnt perscribe anything else he said that nothing else will work. urghhh. Any input that anyone has would be really appreciated as I feel lost and frustrated. BTW I am 32year old female living in Buffalo,NY. I apologize for the improper placement of the post.

     
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    Old 01-16-2009, 03:59 PM   #47
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    Re: RSD so many questions

    It's not improper. You need help and here is the best place. I don't live in your area, but I am sure that you will get someone to get you some to answer. The hardest part is finding that right doc. Good luck. keep checking these posts.

     
    Old 01-20-2009, 11:47 AM   #48
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    Hyperbaric Oxygen Therapy

    Hello there,

    I have a little experience with Hyperbaric Chambers. They are very expensive and depending on who is receiving the treatment, can be quite invasive and upsetting.

    I found a safe and highly-effective method of increasing and sustaining oxygen, hydration, and cellular detoxification levels. It's much less invasive than Hyperbaric Chambers, costs under $100, and is proven in human clinical trials. Based entirely on sound science, it works for me, and will help you too.

    Let me know if you would like more information,

    Amy :0)
    "EnergyGirl"

     
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    Old 01-20-2009, 04:33 PM   #49
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    Re: Hyperbaric Oxygen Therapy

    HBOT is not at all invasive. Using that word is more appropriate when referring to a having blocks done. Anything that pierces the skin in any way is an invasive procedure. HBOT is certainly not that as you are just laying in a clear chamber. I can see it might be upsetting to some who are claustrophobic. They will usually prescribe a valium or 2 for a person to take beforehand just as they might do with people who are getting an MRI and claustrophobic.

    I only point this out because I do not want anyone thinking HBOT is some horrible thing to have done because it most certainly is not!! It has greatly improved many an RSD'er and given them back their life. They are working again and though still have rsd the pain is been reduced by more than half.

    You are correct in saying it's expensive. Insurance will not pay for treatments for rsd. It's considered "not a standard treatment", unlike blocks,etc. though if you have rsd and another condition that could be helped by hbot, then having the doc write a scrip for the one thing with no mention of rsd would be beneficial all the way around and take out 2 birds with one stone so to speak.

    Hugs,

    Karen

     
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    Old 01-21-2009, 05:29 AM   #50
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    Question Re: RSD so many questions

    Hi Galloen,
    I do have a question for and hope you can help me. I have RSD and went to therapy to help maintain the movement. While in therapy I fell and sprained my wrist. Just a small sprain and now the Dr. is telling me that he wants to do surgery on my wrist for teninitis. What are the risk of RSD spreading? My hand stays cold all the time, and I can not use hot water on it. My RSD doctor says my nerves are sending the wrong messages to my mind. So does that not sound like RSD already.
    Joy

     
    Old 01-21-2009, 02:22 PM   #51
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    Re: RSD so many questions

    It sounds to me, in my non doc opinion lol, as if the slight spread lead to the rsd spreading to your hand.

    I have had tendinitis myself and you do NOT do surgery for that!!! Tendinitis can only be treated with rest and anti inflammatory drugs like Ibuprofen. Now carpal tunnel is treated by doing surgery but only after every other treatment has been tried. This doc is out of his freaking mind talking surgery!!!!! DO NOT DO IT!!!!

    Surgery should not be done unless it's a life or death situation, or there's a problem that is going to cause even more problems and nothing else has worked so surgery is the only option left. Something like a knee replacement or hip replacement. There is a HIGH risk of spread with surgery. There are precautions that can be taken if surgery MUST be done. Having a block done before and after surgery,adequate anesthesia during surgery and a pain pump for a few days after surgery so the nervous system will remain calm and not cause a flare of the existing rsd and will hopefully not spread to the surgery site.

    There are people who have had surgery with rsd,did not get spread or a flare because they took these precautions. The surgeries they had though were necessary and in the end you just have to hope it'll be ok.

    So, tell the doc NO WAY to surgery for tendinitis. *snorts* Yeah......me thinks he needs to go back to medical school and re-learn the proper treatments for minor things.

    Hugs,

    Karen

     
    Old 01-21-2009, 04:36 PM   #52
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    Re: Hyperbaric Oxygen Therapy

    Hi there.. It been 8 weeks going throw the pain of dealing with RSD.. I'am now on Pain pills.. Don't feel much pain anymore. I'am hopeing that good thing I just keep wondering if It the pills doing it or am I healing from RSD.. Don't known much about RSD truthfully .. ..

    I have some concern .. My hands is still swollen, In the last week I find my wrist and arm and little pain in my neck.. Not sure how much pain because of the pills I'am taken.

    Also going to physio Don't think it help at all really.. If anything I think it makeing it worse.. The problom I have with physio is I'am on pain pills.. I don't feel alot of pain anymore I scare and wonder how far they can bend my finger or turn my hand because I feel little pain when they do that.. But is it because of the pain pills I'am on. Could this make it worse when they don't know how far they can push my limits with my hand because I don't feel much pain because of the pills.. ..

    Also wait to see another doctor toward getting nerve block done IT been a week and still know call.. Sound like they have a long waiting list.. If that case How far can I go before The rsd get worse if I don't get this nerve block done soon ???/

    Not sure what to do . I feel lost and worry about work.. Because all I know how to do is use my hands for labor work. I don't have any training or schooling under my belt.. Anyone has any answer

     
    Old 01-21-2009, 05:08 PM   #53
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    Re: Hyperbaric Oxygen Therapy

    I have some concern .. My hands is still swollen, In the last week I find my wrist and arm and little pain in my neck.. Not sure how much pain because of the pills I'am taken.

    It's a good thing that the pain meds are keeping the pain down. Letting the pain go out of control can make the rsd spread faster,IMO. The pills are keeping the pain down,if you were to stop taking them, the pain would come back full force. You don't just "heal" from rsd.

    It's unfortunate and a harsh truth, but once you have rsd, you have it for life. You don't "get over it", it doesn't go away on it's own, it can spread. There are docs out there who aren't that knowledgeable about rsd and will say it'll go away, it can't spread, work through the pain.....Ummmm, all wrong! If you're lucky you can get remission. The sad part is very few people actually get remission. Blocks are a good start for sure and the sooner they start the better. You need to catch the pain while it's still SMP or sympathetically Maintained Pain. Once it becomes SIP or Sympathetically Independent Pain, then blocks will not help or do any good.

    Call the doc's office and ask about the appt, persist until you get an answer from them. If possible, find another pain doc who does blocks and can get you in asap.

    PT either helps or makes things worse for us. There doesn't seem to be any middle ground. You must use the hand or risk losing the use of it completely. If you have a lot of pain after doing pt or high pain during, then you are probably doing too much. PT for us needs to be slow and gentle. That old saying, No pain,No gain.....it does NOT apply to us. You need to find where your limits are. Only you know how you feel, how much is too much that makes you have more pain. No one else can know what your limits are. You have to say I can't do anymore, I'm in a lot of pain and it's too much. We have to educate ourselves and put our foot down with these people and say No. Remember, they work for us, not the other way around. No one can make you do anything.

    Hugs,

    Karen

     
    Old 01-21-2009, 10:52 PM   #54
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    Re: Hyperbaric Oxygen Therapy

    I understand what you say,, But the problom I'am haveing is I don't feel much pain because of meds So when there pull or move my hand every which way they can,, When I do tell him to stop,, Make me think .. If I wasn't on these pill would I be tell him to stop at alot faster.. If so does that mean he could be damage me more because of it with out even knowing ...

    I tell you I glad I'am on these pills but I scare to know what it going to be like when I go off them... Feel pain up my arm a little is scary because it has been that long sence I foud out I have RSD.. It's very scary ...

    My head is all over the place with this..

    Thank you for your help

     
    Old 01-21-2009, 11:37 PM   #55
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    Re: Hyperbaric Oxygen Therapy

    Quote:
    Originally Posted by manrsd View Post
    I understand what you say,, But the problom I'am haveing is I don't feel much pain because of meds So when there pull or move my hand every which way they can,, When I do tell him to stop,, Make me think .. If I wasn't on these pill would I be tell him to stop at alot faster.. If so does that mean he could be damage me more because of it with out even knowing ...

    I tell you I glad I'am on these pills but I scare to know what it going to be like when I go off them... Feel pain up my arm a little is scary because it has been that long sence I foud out I have RSD.. It's very scary ...

    My head is all over the place with this..

    Thank you for your help
    Ok, I see what you're saying. Sorry I misunderstood. No worries though.

    The only way he'd damage your hand during pt is if he were really rough,twisting the hand and wrist too far. Like wrenching it side to side looking like he might be trying to break it or something. If he's just moving it in a "normal" way, then he wouldn't damage your hand and cause more problems.

    Why would you go off the pain meds? It's important that you keep taking them so you're able to function and get pt. With rsd none of us would be able to function if we weren't getting pain management with meds. If you don't get it into remission, then you're always going to have to take meds. It usually takes a combo, like a pain med, a muscle relaxer for muscle spasms and it also helps to calm down the spasms that make your arm or leg jerk uncontrollably, and one more med like lyrica or neurontin or cymbalta or topomax. They're supposed to help with nerve pain and for some they work on the pain and any burning you might have. Some it just helps the burn but not the pain.

    This is all overwhelming I know but I'm glad you're asking questions. We don't always have concrete answers but at least we can tell you what might happen or not happen and if something is related to the rsd or not.

    Hugs,

    Karen

     
    Old 01-23-2009, 10:51 AM   #56
    manrsd
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    Re: Hyperbaric Oxygen Therapy

    Toward going off the meds.. I don't plan on it,, Just though after while maybe things would get better.. I could off them.. Like I said I don't know much about RSD.. Learn as I go..

    I Go throw pain due to Swalloning . That so hard to deal with it.. But hard parts is.. It my right hand.. Which I use to use it for everything I'am right hand it... It get so pss at time ..

    Ther so much more to this story.. How this happen in the first place.. It was at work and I'am going throw so much bull from my boss.. She make things inpossible for me to live.. Talking about money to feed my kids... I'am not going to get into right now only because not sure if I can talk about that sutff on here. If it ok talk about those things too let me known. Just going throw alot stress because of this..... I will say one thing I'am week away from rent being due.. No Check from WCB because my boss.. Me and my kids could be out on the streets if this happen

    So far today it been a good day with rsd. I all most feel normal again no pain at all and swallon gone done .. My hand just about look normal.. I had days like this before.. You know what I hate them.. Because make me feel like it getting better I get my hope up then few days go bye and it get worse..

    Thanks for your Help

     
    Old 01-23-2009, 06:34 PM   #57
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    Re: Hyperbaric Oxygen Therapy

    I'm glad you don't plan it, but it really is all about learning as you go. We have all been where you're at. It's a sad fact that it won't go away and unless you go into remission, you'll need the meds. I recommend taking grapeseed extract. It's good for a lot of things and may help prevent or at least slow down spread. Vitamin C is good as well. Just something for you to keep in mind whenever you are able to get it. I know all about not having money. I hope you don't lose your place. Have you gotten a lawyer? They should have been paying you long before now! It's the one thing you need to do right away, cause no one can deal with wc on their own. Let a lawyer handle it.

    I'm right handed too. I have rsd pretty much everywhere so I understand the frustration you feel. The only place I don't have it is in my chest,neck and face. All the rest of me deals with it.

    You can talk about anything on here. Just can't post any personal info such as email addy,phone number or stuff like that. You can tell all about how,why stuff happened,anything.

    Yup...those good days that make you feel kind of nuts. I went through that as well. I hope you get treatment going soon because it's still early for you and that's very important. Look into the lawyer if you don't have one already. I'll be thinking of you and hoping tomorrow is a really good day for you too!

    Hugs,

    Karen

     
    Old 01-24-2009, 06:31 AM   #58
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    Re: RSD so many questions

    Hi again everyone!
    Well my news is that they are sending me back to thearpy, i have had over 3 months of it and now i have to leave my home again and do it for 3 more weeks. i am very discourage about it to. the shoes they built me , well they hurt my foot so bad that i can only walk in it for a hour at a time , if i am lucky. i want out of this boot, my foot broken and fixed and go on with my life. everytime i turn around they want to cut on me or do this or that. why can't they just leave me be and let me try to heal?
    just sounding off!
    joyy

     
    Old 01-24-2009, 06:37 AM   #59
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    Re: RSD so many questions

    hi karen, ty
    i am not allowed to take blocks because of i am allergic to the meds. they tried to give me one and i almost died. great huh? my nurse manager has said she will not let them do surgery. we will see, so my hand is in a cast my foot is in a boot , now i wonder what they can do with my mind? lol
    smileeeeeeeee and have a great day!
    joy

     
    Old 01-24-2009, 11:28 AM   #60
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    Re: Hyperbaric Oxygen Therapy

    HI there

    Got a good night sleep last night .. I sleep in 2 hours pass my normal time I can tell a different I find my hand alot this morning .. Bye not take my pills normal time.. I just took one it should go away in a bit..


    Like I was saying in my post.. I ask if ok to talk about all my problom that been happen sence I been off work because RSD..

    Were do I start.. At beginng when this first happen My boss turn into a really pain... MY hand so going up and down with swalloning .. I went brough her a docotor not that I can't come into work. She look at me and said.. IT look like some who been beating there woman it just make no sence why your hand is like that.. This was before I found out it was RSD..

    When I first stop working because of this, IT took WCB 3 halfs week to accept my claim.. SO that was 3 weeks of no money for my family on top of christimas.. I ask my bos for my over time hours that hasn't been payed to me yet she said NO.. I end up take her to the labor board. Now my boss is fight with them avoiding there phone call things like that.. There more two this but I don't want to on and on.

    Now last week I ask WCB way is takeing so long to get another check again .. They told me it's because of my boss,,, They left message after messager regrading about part time hours I work over two half weeks ago. They can't sent out a check on they get that.. In the mean time here I'am less then a week away and rent due..

    Here I have hard time dealing with RSD.. I have this going ontop all this.. I have a large family 5 kids to support.. It very scarey.. Start to feel like Reject because what happen to me .. I don't understand How my boss can get way with screw me over from both side with Laborboard now and WCB..

    It's doesn't just stop there.. She lie to WCB saying this I was doing with my hand when I wasn't do it all a work.. I have enough stress dealing with RSD not nowing what come ahead for I don't need this.. What shoud a person do.????

     
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