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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

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    Old 08-15-2008, 07:46 PM   #1
    lindkaye3
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    acupuncture and rsd

    Hi there;

    Just wondering if anyone can give me their experiences with using acupuncture for their rsd. I have it in my right knee (came on after total knee replacement). I cannot regain my extension or flexation of my knee - sent me to a pain managment - physical medicine dr who diagnosed crps 1. It is now effecting also my foot and my lower back. I have had 5 lumbar blocks with some help - but what I gain with the block disappears after about 6 hours. They want me to continue the blocks - but they are so expensive and I had a reaction on the last one. I am on methadone and oxycodone, which helps some - but I am still in quite a bit of pain - some days I can bearly walk or move. I've lost my job and feeling quite depressed - but I am assuming this is somewhat "normal" for having this horrible disease. At times I just feel very isolated as I don't think my family can understand how much pain I have all day. I am now contemplating seeking natropathic treatment including acupuncture to go along with my normal treatment. Has anyone done this - and did the acupuncture work for your pain at all? I have met with a good natropathic clinic - and they were very up to date on CRPS information. Thanks for listening and any advice anyone can give - would be most welcome.

     
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    Old 08-16-2008, 12:27 AM   #2
    RoseinSanDiego
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    Re: acupuncture and rsd

    Hi,
    I was told nothing invasive unless absolutely necessary. The risk of spread and a flare up is pretty high, so be VERY careful.
    Deb

     
    Old 08-16-2008, 09:04 PM   #3
    hdladyred
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    Re: acupuncture and rsd

    Hi, I have been diagnosed with CRPS/RSD of the right foot and have not been able to work or walk for over 14 months now and have been approved for 100% SSD. I had a total of 9 lumbar blocks with the same type of releaf that you got - the longest one lasted about 3 days - the shortest 6 hours. I had a spinal cord stimulator since November of 2007 that was "revised" (the wire moved and a 2nd one added) in April of this year with about 10-20% relief (but any relief is better than none with this terrible condition). All of this stated I keep a very open mind and look for both Western and Eastern medicine for relief. I had a total of 14 accupuncture sessions and they helped me tremendously. I will say that I did quite a bit of research and was very careful as to who I went to. I was blessed to be able to go to the acupuncture physician who treats many of the professional athletes in the Tampa area that I know through connections I have through my former work at the hospital. All of this stated, I would encourage everyone to be cautious with their body and be very thorough in investigating any and all practitioners before allowing or accepting any procedures to be done on then.
    Best wishes to all for many pain free days.
    Lissa

     
    Old 08-16-2008, 10:52 PM   #4
    RoseinSanDiego
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    Re: acupuncture and rsd

    Hi Lissa,
    I never knew that we RSD'ers could have acupuncture. I'm pretty new to RSD. Was diagnosed in Sept. 07. Mine is in both feet, it began after left foot surgery in July 07.
    You have been through alot. When I read these stories, it makes me feel so sad for folks because we must deal with some really tough days. How long have you had RSD? You mentioned that you're not walking or working for 14 months. Is that how long you've had this horrible disease? It's so weird that it effects all of us in such different ways. I go back to my 3 hours a day job in the classroom this coming Tuesday. I also have a good husband and 2 daughters. Our oldest has multiple disabilities so I'm trying my darndest to keep this darn RSD from gettin the best of me. So far, the medication seems to be doing its job and I pray that's all I continue to need.
    You take care, and I enjoy these boards. It gives me lots of information and I feel like it's somewhere I can turn to without being judged. I've gained 40 pounds since diagnosed, and sometimes I don't even feel like the same person.
    Deb

     
    Old 08-17-2008, 12:27 AM   #5
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    Re: acupuncture and rsd

    I hate to come in on your thread lindkaye3 but I just wanted to ask hdlayred a question, please forgive me.

    I noticed that you (hdladyred) stated in your reply that you are receiving 100 % SSD. How long did it take for a final decision was made for you? Did you need to go to any of their doctors to be evaluated?

    On Sept. 9th I have to go to see one of their doctors. They want me to have a memory test and mental health evaluation! The Doctor I am scheduled to see is a psychiatrist so I assume that there will not be a physical evaluation done from her.

    I was confused to as why they did not want some type of physical evaluation from one of their MD's. Perhaps that will come after this type of evaluation?

    Any information from you concerning what to expect from this doctor and any other help as to what you needed to do for you to receive your SSD would be very much appreciative. Thank you!

    May Your Day Be healthy and Happy,
    Chris

     
    Old 08-17-2008, 04:37 PM   #6
    Sunnycal
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    Re: acupuncture and rsd

    Chris, on the Disabilities Board, there are lots of threads about social security. It seems to vary a lot, on how long it takes. My husband got his on the second try (they deny everyone the first time).
    Oh, I just went on the disabilities board and saw that you did already post there. :-)
    Sunny

    Last edited by Sunnycal; 08-17-2008 at 05:06 PM.

     
    Old 08-17-2008, 05:44 PM   #7
    lindkaye3
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    Re: acupuncture and rsd

    So regarding my post below on acupuncture - has it really helped with the pain for anyone? Hdladyred - you stated you had 14 treatments done - was this done on your back or leg? How was the pain during treatment? I feel confident with the Homopathic Clinic I have gone to - they are familiar with RSD and will work along with my Pain Management Doc. I feel like I have to pursue any avenue that might give me some pain relief. Right now I am on the methadone and oxycodone which helps some - but I hate being on them. I woke up this am in so much pain, I could not even roll over, my hubby had to help me get out of bed. My lower back now is giving me as much pain as my knee, which I dont know why - has anyone had this happen with RSD? They have taken an MRI of my lower back - it has 1 disk slightly bulging - but thats it. I am hoping the acupuncture could help alleviate the pain in the back - and if it helps the knee - its a bonus!. Does anyone know if when I apply for SS disability they will want the medical records from the acupuncture physician? Thanks for anyones response.

    lindkaye

     
    Old 08-18-2008, 02:09 PM   #8
    hdladyred
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    Re: acupuncture and rsd

    Deb and Chris,
    Let’s see if I can answer all of your questions. I was diagnosed with RSD/CRPS on June 1, 2007 after I broke the 5th metatarsal in my right foot (technically a Jones fracture). I was non-weight bearing after the fall and developed the condition right along with the break but just didn’t know it until about 2 months later when my orthopedic doctor diagnosed it. I was lucky he did it so quickly. I have not walked since then due to the pain but the bone has healed. I’ve tried many courses of treatment including: loritab, lyrica, cymbalta, hytrin, topimax, amrix, fentora, fentanyl patches, lidoderm patches, spinal cord stimulator implant, physical therapy (still do this daily at home), acupuncture, hyperbaric treatments (60 dives), a tens unit and most importantly a positive attitude.

    I applied for SSD on my own and was approved on my first pass. They asked me to go for both a physical and mental evaluation. I asked why and they stated because of my responses on the online application. I provided them with my medical records and they waived my going for the exams. I found the social security people to be both professional and friendly and more than willing to be of assistance. When I was confronted with one person on the phone who was less than friendly I just hung up and called back – luckily I had not given any contact information at that point – and I connected with someone the next time who was much more helpful.

    Regarding the acupuncture – I had needles all over my body. They were mainly on my right leg – which is where my RSD is. They did help some for the pain but where she mainly helped me was in the area of sleep. Since I went to her I have been able to sleep almost 5 hours a night. Before that I never slept due to the pain. I still have almost the same amount of pain (the acupuncture seemed to help me during and after the sessions but not long term for the pain) but has helped me out long term regarding sleep. I am unable to afford to continue the sessions for acupuncture as I am a work comp case and they would not pay for acupuncture but I would recommend that anyone who is able to afford it – and who has an open mind and access to a reputable and reliable eastern physician give it a try. It certainly helped me.

    Lindkaye… I did not give SS my acupuncture records – but if it would help your case – then you should consider doing so. I had over 200 pages without my acupuncture records so there was no need for me to add them. If you need the documentation and substance from another physician documenting your condition then by all means you should include them. The more evidence you provide – the more likely it is that you will “pass” on your first try.

    I hope that I answered everyone’s questions… if not, please let me know.

    Lissa

     
    Old 08-18-2008, 06:24 PM   #9
    Michelle94
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    Re: acupuncture and rsd

    Lisa,
    I have a question for you.. I've been out of work for almost 5 yrs now.. Never applied for SSD because I was always told I didn't have enough working credits. I was just told recently that I should apply for SSI.. For low-income.. and I also should apply cause I have 2 kids under the age of 18.. With that said.. My question is... I have all medical bills from the last 7 yrs of have this.. from my lawyer after I settle my case.. I was also interviewed my disability specialist during the process of my lawsuit.. In his documentations. It states that I am unable to work, what I will miss out in for the rest of my life.. How much money I will miss out etc.. Do you think I should send that along with my medical records?
    Michelle

     
    Old 08-18-2008, 09:22 PM   #10
    tigerlily11
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    Re: acupuncture and rsd

    Hi HDladyred!
    Regarding your acupunture treatment, I have read that any invasive treatment, including acupuncture needles particularly, near the injury site(ankle/foot/leg) can cause a flare-up, irritate the sympathetic nerve even more so, and cause the RSD to progress!! That is why I am so hesitant to try acupuncture although I really want to give it a try..I have great trust and admiration for alternative therapies, particularly acupuncture. How did you come upon a decision to pursue despite the warnings!!!
    (This fact actually makes me wonder about invasive nerve blocks into the back as well ! (I just had one last Friday!!)
    Any more info about your acupuncture experience would be so appreciated!!!
    Wishing you and everyone peace and improvement!!

     
    Old 08-18-2008, 11:45 PM   #11
    hdladyred
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    Re: acupuncture and rsd

    Hi Michelle,
    Regarding SSD and SSI – I don’t have all the answers – but from what you are saying I’d definitely take all of your medical records and make an appointment with the SSD office and see about applying for both – in your case I think I’d go in person. It might be possible for you to file for SSD based on your husband or possible ex-husband’s credit’s (I’m making an assumption there) you can file the SSI based on your income – so you are correct there. And with children under 18 there are all kinds of other options that I don’t know about – so find a “friendly voice” at your local office and make an appointment. If you make the appointment now – not at the end or beginning of the month they will probably have more time to talk to you. Also, the more information you have (e.g. medical records in your hands to substantiate your claim the better). As far as what you will miss for the rest of your life, you could take that with you, it wouldn’t hurt. Just remember that everything I am saying is just my opinion… I’m not an expert or a lawyer – I’m just one more person who is going through this.

    Hey Tigerlilly… for the acupuncture treatment you are right, any invasive treatment can cause RSD/CRPS including an IV so this was a calculated risk on my part just as everything we do can be. I just weighed the pros and cons as I have with all of the treatments I have had and decided that this was one that I wanted to pursue. As we all continue to say, we all are different, we all respond to medication and treatments differently. We have to choose which treatments we are going to go through with our physicians and families as informed decisions. I never hesitated to have the acupuncture – I would not have surgery or “major procedures” on my right leg unless it was absolutely critical so that is the cutoff point for me, each of us has to decide what our point is. I’m not sure what other information you are looking for about my acupuncture experience… ask questions and I’ll be happy to answer! I hope that this helps…
    Have a good night.
    Lissa

     
    Old 09-19-2008, 06:22 PM   #12
    hypatypa
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    Re: acupuncture and rsd

    Hello

    I have just read your post. I have RSD in my right foot and it has moved to my left - this occurred pretty well after recent joint fusion surgery. I can only give you feedback for myself but I had several sessions of acupuncture and it definitely made the condiiton worse. I don't know whether it was the stress of the situation but it increased the burn and tearing sensation significantly and, in the end, just the thought of more needles got it going. I discontinued dry needling and found a physiotherapist who had more of a mind/body approach and I continue to work with him along with the other strategies to help me along the way and live some sort of normal life.

    Sorry that I am a bit negative on this. I am sure acupunture helps a lot of people though.

    Kind regards, Joan.

     
    Old 09-20-2008, 09:05 AM   #13
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    Re: acupuncture and rsd

    Hi Joan,
    It is interesting to read the variety of responses about everything!! Meds, acupuncture, exercise, etc: Yes, RSD has a mind of its own...I have been really dealing with that in the last few days...It visits various parts of my body on different days with varying intensity..I work 8 hours a day and this unpredictablility makes it challenging and has me on edge waiting for the next RSD surprise. I have an appt. on Oct. 6th at a university hospital pain center and will have my questions ready, especially about acupuncture as I am not taking meds by choice at this time and feeling the pain.......I really want to try acupuncture but have apprehension...when you had acupunture did the flare-up it gave you finally recede..how long did it take for it to calm down?
    Joan, can you tell me more about the mind/body approach you are using? Is it biofeedback, etc? I would really like to hear about your experience with that and if it has helped!!!! I wish you a restful week-end!

     
    Old 09-21-2008, 05:03 AM   #14
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    Re: acupuncture and rsd

    I just can't imagine getting acupuncture.. I would think for me it would flare me up.... I can get a bug bite and it flares me up... But then again everyone is different. All you can do is try it.. see how it works..
    I just was wonder why you won't take your meds.. When I first started with RSD.. I didn't want to talke any meds either.. I use to get so sick with them. and I knew this from prior injuries that I have had.. I was so scared. I actually put it off for over 1 1/2 yrs.. It just to the point where I was not getting sleep, up all night in pain, I started not to function during the day, messing up at work.. and very irritable. Then on day.. I had a fight with my oldest son.. He started freaken out.. Hes like mom.. Will you just start taking you meds.. This crazy.. Its making one else suffer too.. From that day. I really thought what my family has and is going through.. Since I did start taking them.. I did get very sick at first.. but you know what? I am so gald that I did. What a difference.. So for what every reasons.. Please just think about it.. I hate to see you suffer when you don't have to as much..
    I have also learned to push through pain.. I really believe for me.. that if I don't think about it and try to do things and go on with life its not as bad.. After 7 yrs of this.. I am finally going back to work.. I was crying the day.. I just can't believe I am finaly at this point.. I never thought it would happen.. I thought my life was over, I would in a wheel chair eventually.. but I am not... I hope this happens for every one of you guys out there.. I pray for you all.. I know what its like..
    Tomorrow my day.. going back to work.. Yikes.. lol..
    Michelle

     
    Old 09-21-2008, 12:05 PM   #15
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    Re: acupuncture and rsd

    Hi Michelle,
    Your post really helped...yes, I fear the meds and how they'll make me feel..I commute 10 miles one way to work and have an intense job..plus I am responsible for my 96 year old mother..I can't be feeling spacey and nauseous the way Neurontin can make you feel....so I'm taking it a day at a time right now. Last night was hard..I had severe aching in my neck, shoulder, hip and lower back...and the original injury/surgery left foot !! yikes, I slept with the heating pad, which has become my "teddy bear" !!
    I look forward to my Oct. 6th specialist consultation appt.!!
    I am soooooooo excited for you and your job! We are all rootin' for ya !! It's inspiring and uplifting to hear your enthusiasm!!
    My new philosophy is que sera, sera, take it one or two days a a time!!!
    keep us posted of how it goes!!!

     
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