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How many were sent to a P.T. for hypersensitivity

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Old 08-22-2010, 10:11 AM   #1
hurting
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Default How many were sent to a P.T. for hypersensitivity

I had 3 Drs.send me to the P.T. to desensitize the top of my hand, wrist, and forearm. All this did was make things worst by increasing my pain and lighten my wallet.

I would tell the PT what it did as well as the Drs. all everyone would say is this what needs to be done to fix my problem no pain no gain. After 3 years I finally found a Dr. that listen to what I had been telling all the rest only she listened and changed what I needed to do about the over sensation in my hand, wrist , forearm stopped all my PT.

I went through several test EMG, ultrasound, and more only to find that my radial nerve was not regrowing after the first surgery to fix my nerve. I waited almost a year to find this out because the Dr. told me it would take at least 2 years before we would know if the surgery took. My body was telling me the pain was getting worst by the week instead of getting better.

Has any of you fine folks gone through this same problem as far as trying to desensitize a body part when there was something else completely wrong and increasing your pain 3 fold then told it is in my head and not in my hand ect.
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Old 08-22-2010, 03:13 PM   #2
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Originally Posted by hurting View Post
I had 3 Drs.send me to the P.T. to desensitize the top of my hand, wrist, and forearm. All this did was make things worst by increasing my pain and lighten my wallet.

I would tell the PT what it did as well as the Drs. all everyone would say is this what needs to be done to fix my problem no pain no gain. After 3 years I finally found a Dr. that listen to what I had been telling all the rest only she listened and changed what I needed to do about the over sensation in my hand, wrist , forearm stopped all my PT.

I went through several test EMG, ultrasound, and more only to find that my radial nerve was not regrowing after the first surgery to fix my nerve. I waited almost a year to find this out because the Dr. told me it would take at least 2 years before we would know if the surgery took. My body was telling me the pain was getting worst by the week instead of getting better.

Has any of you fine folks gone through this same problem as far as trying to desensitize a body part when there was something else completely wrong and increasing your pain 3 fold then told it is in my head and not in my hand ect.
My experience was similar although in some ways, very different. My arm was unbearably sensitive so when the PT went to range my shoulder by grabbing my forearm, it felt like he was using vice-grips to rip the flesh off of my forearm. He got frustrated and said my therapy wasn't going to go anywhere until the sensitivety issues were resolved. I know he wasn't grabbing me that hard but it was that hypersensitivity that clued me into the possiblity of RSD. Also, an ortho told me that no matter how much it hurt, to continue using my affect arm and hand to "desensitize" it. The SGB's helped decrease the hypersensitivity.

How did you damage your radial nerve?
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hurting (08-23-2010)
Old 08-22-2010, 03:32 PM   #3
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Originally Posted by Dubious View Post
My experience was similar although in some ways, very different. My arm was unbearably sensitive so when the PT went to range my shoulder by grabbing my forearm, it felt like he was using vice-grips to rip the flesh off of my forearm. He got frustrated and said my therapy wasn't going to go anywhere until the sensitivety issues were resolved. I know he wasn't grabbing me that hard but it was that hypersensitivity that clued me into the possiblity of RSD. Also, an ortho told me that no matter how much it hurt, to continue using my affect arm and hand to "desensitize" it. The SGB's helped decrease the hypersensitivity.

How did you damage your radial nerve?
I am sorry that I can't help give help or advice on this issue..but when I was in my aggressive Pt following my knee surgery..the Pt person who was most familar RSD..recommended desensitzation of limbs..he demonstrated it to me how to use a soft towel to rub the RSD area first thing each morning..he said that would help.. I know loretta will have mich advice with this issue..

Soft hugz, Kathy
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hurting (08-23-2010)
Old 08-22-2010, 06:00 PM   #4
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Quote:
Originally Posted by hurting View Post
I had 3 Drs.send me to the P.T. to desensitize the top of my hand, wrist, and forearm. All this did was make things worst by increasing my pain and lighten my wallet.

I would tell the PT what it did as well as the Drs. all everyone would say is this what needs to be done to fix my problem no pain no gain. After 3 years I finally found a Dr. that listen to what I had been telling all the rest only she listened and changed what I needed to do about the over sensation in my hand, wrist , forearm stopped all my PT.

I went through several test EMG, ultrasound, and more only to find that my radial nerve was not regrowing after the first surgery to fix my nerve. I waited almost a year to find this out because the Dr. told me it would take at least 2 years before we would know if the surgery took. My body was telling me the pain was getting worst by the week instead of getting better.

Has any of you fine folks gone through this same problem as far as trying to desensitize a body part when there was something else completely wrong and increasing your pain 3 fold then told it is in my head and not in my hand ect.
Hi hurting, It's good to be back to my friends here on NT. We moved 5 miles away to a retirement center, but feels like we moved 5,000 miles. We had a large house and cut that in half with the move. We love our new home and are finally settled.
RSD usually comes along with it sensitivity to touch, fabrics, wind, anything light can be horrendously painful and unbearable. From my experience I happened to be very fortunate-as I wasn't diagnosed with RSD for 4 years. Following breast surgery to remove two tumors, I immediately got frozen shoulder and recommended to physical therapy. My Rehab Dr. oversaw my therapy for a year. Extremely extremely painful, worst frozen shoulder she had seen. Took pain meds prior to therapy. I felt massage therapy would warm up my muscles and advance the therapy, so paid for an hour of light massage therapy just prior to physical therapy. I believe that desensitized me without me knowing it. The physical therapy was torture, but regained almost full range of motion back. Turned down surgery to break shoulder loose and choose to stick with therapy until got use of arm back. My therapist told me it might go to other shoulder. I thought that sounded so strange, as my benign breast surgery was on left side. We moved from Oregon to Arizona and I was (in remission for at least a year) All of sudden felt right shoulder freezing up. Found a great physical therapist ( he had just come off the pga tour and set up his practice) He was great and got full range of motion back, I again did massage therapy prior to physicall therapy.
Another remission. at least another year.
While water skiing, felt my left hand pull a nerve. So Painful, color changed, swollen and so sensitive, couldn't cut fut, peel a potatoe, or even drive with left hand-my left hand became frozen like a claw. The Dr. said I had rheumatoid arthritis, even though my tests were negative for RA. I knew he was wrong so went back to Oregon and saw sport injury group-ortho hand doc and he said rsd in 1 minute, sent me to hospital for nuclear hand test (dye) confirmed rsd. ordered a Tens Unit, which I felt helped me with sensitivity. started therapy in oregon , both physical and massage. Came back to Arizona and found neurologist and ortho hand doc. both confirmed rsd. the ortho hand doc had his own therapy part of his practice. His therapists were familiar with rsd and along with therapy to get range of motion back, he desensitized hand. It was done lightly . They had a machine that you put you hand into and it blew warm sand around. the warm sand of course touched the entire hand. They had me put hand in different bowls, one of rice, coffee grounds, cotton balls, beans, etc. I did this at home too every day. run my hand into these plastic bowls of various textures. I got back partial use of fingers, I can cut my own food, wash dishes, everything just about, but only have partial use of hand. It's frozen like a claw. I am so grateful, but the delay in diagnosis and treatment, didn't make it possible to get full range of motion. Went into remission, then moved to right hand, therapy right away and got full range. I continue to do massage therapy. I have RSD full body, generalized- both feet, spine, and internal. I am not sensitive to wind, fabric, etc. which I am very grateful for. It's been 15 years now, 11 years with diagnosis. The last 6 years have a great Dr. that is psychiatrist, neurologist and pharmacologist. He has been wonderful, especially with my emotions, and grieving process, the losses we all have with rsd and adjustments in life.
I hope this helps you- the densitization needs to be gentle and gradual. Just start with cotton balls, soft pieces of fabric. etc. The Tens Unit is adjustable and can be put on low frequency, gradually increase. The therapy was like I said, torture, but I'm glad I have full motion except left hand. I can type and play piano again, but can't bend my fingers completely. My toes starting curling upward where they didn't touch floor. My Dr. had me get in our pool every day and squeeze my toes while swimming. After about 4 months, my toes are touching the floor again. Swimming is wonderful exercise. the temperture needs to be 86 degrees. Some gyms have indoor pools and keep water at 84-86. But I believe it's 86 degrees that RSDSA says is good for us. The YMCA or EASTER SEALS have warm pools.
Please let us know how you are doing. We really care and find so much compassion and support here. One of your new friends, loretta
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Old 08-22-2010, 08:39 PM   #5
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Dear hurting,

If possible, try to find a PT that knows something (or cares enough to research) about RSD and treatment plans. Regardless of how you acquired it, you still need to work on desensitizing your affected areas. I injured myself close to four years ago, and clothes still irritate my skin when low pressure weather systems come through.

Lidocaine and Flector patches help quite a bit. My original injury was to my shoulder, and when I am having a bad day I stick a patch over it so that my clothes don't rub against my skin and cause pain. Sometimes my shoudlerblades and arm hurt, so I will put patches there also. I can use up to 3 patches a day for 12 hours.

I had 2 shoulder surgeries - both in the spring, one year apart. It wasn't until after the 2nd surgery that my ortho finally figured out what was wrong with me. But I will never forget having to start wearing warm, heavy clothes with the onset of cold weather here in New England months after surgeries and how badly it hurt. I would walk my dog early in the morning and just cry because it was so painful to have to wear clothes on my shoulder. Slowly I became fairly desensitized to the feeling of the weight of the fabric against my skin. Only another RSDer could understand what an ordeal that was!!

If you don't feel that your current PT has the right experience for the job, trust your gut. You've got to make sure that you have the right people in front of you for the job, because no one else is going to. Perhaps a discussion with your ortho or with a highly regarded pain management specialist in your area wil lead you to the best recommendation.

Let me know if you have any ?? xoxox Sandy

Last edited by SandyRI; 08-23-2010 at 07:43 AM. Reason: editorial
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Old 08-22-2010, 09:14 PM   #6
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Originally Posted by loretta View Post
Hi hurting, It's good to be back to my friends here on NT. We moved 5 miles away to a retirement center, but feels like we moved 5,000 miles. We had a large house and cut that in half with the move. We love our new home and are finally settled.
RSD usually comes along with it sensitivity to touch, fabrics, wind, anything light can be horrendously painful and unbearable. From my experience I happened to be very fortunate-as I wasn't diagnosed with RSD for 4 years. Following breast surgery to remove two tumors, I immediately got frozen shoulder and recommended to physical therapy. My Rehab Dr. oversaw my therapy for a year. Extremely extremely painful, worst frozen shoulder she had seen. Took pain meds prior to therapy. I felt massage therapy would warm up my muscles and advance the therapy, so paid for an hour of light massage therapy just prior to physical therapy. I believe that desensitized me without me knowing it. The physical therapy was torture, but regained almost full range of motion back. Turned down surgery to break shoulder loose and choose to stick with therapy until got use of arm back. My therapist told me it might go to other shoulder. I thought that sounded so strange, as my benign breast surgery was on left side. We moved from Oregon to Arizona and I was (in remission for at least a year) All of sudden felt right shoulder freezing up. Found a great physical therapist ( he had just come off the pga tour and set up his practice) He was great and got full range of motion back, I again did massage therapy prior to physicall therapy.
Another remission. at least another year.
While water skiing, felt my left hand pull a nerve. So Painful, color changed, swollen and so sensitive, couldn't cut fut, peel a potatoe, or even drive with left hand-my left hand became frozen like a claw. The Dr. said I had rheumatoid arthritis, even though my tests were negative for RA. I knew he was wrong so went back to Oregon and saw sport injury group-ortho hand doc and he said rsd in 1 minute, sent me to hospital for nuclear hand test (dye) confirmed rsd. ordered a Tens Unit, which I felt helped me with sensitivity. started therapy in oregon , both physical and massage. Came back to Arizona and found neurologist and ortho hand doc. both confirmed rsd. the ortho hand doc had his own therapy part of his practice. His therapists were familiar with rsd and along with therapy to get range of motion back, he desensitized hand. It was done lightly . They had a machine that you put you hand into and it blew warm sand around. the warm sand of course touched the entire hand. They had me put hand in different bowls, one of rice, coffee grounds, cotton balls, beans, etc. I did this at home too every day. run my hand into these plastic bowls of various textures. I got back partial use of fingers, I can cut my own food, wash dishes, everything just about, but only have partial use of hand. It's frozen like a claw. I am so grateful, but the delay in diagnosis and treatment, didn't make it possible to get full range of motion. Went into remission, then moved to right hand, therapy right away and got full range. I continue to do massage therapy. I have RSD full body, generalized- both feet, spine, and internal. I am not sensitive to wind, fabric, etc. which I am very grateful for. It's been 15 years now, 11 years with diagnosis. The last 6 years have a great Dr. that is psychiatrist, neurologist and pharmacologist. He has been wonderful, especially with my emotions, and grieving process, the losses we all have with rsd and adjustments in life.
I hope this helps you- the densitization needs to be gentle and gradual. Just start with cotton balls, soft pieces of fabric. etc. The Tens Unit is adjustable and can be put on low frequency, gradually increase. The therapy was like I said, torture, but I'm glad I have full motion except left hand. I can type and play piano again, but can't bend my fingers completely. My toes starting curling upward where they didn't touch floor. My Dr. had me get in our pool every day and squeeze my toes while swimming. After about 4 months, my toes are touching the floor again. Swimming is wonderful exercise. the temperture needs to be 86 degrees. Some gyms have indoor pools and keep water at 84-86. But I believe it's 86 degrees that RSDSA says is good for us. The YMCA or EASTER SEALS have warm pools.
Please let us know how you are doing. We really care and find so much compassion and support here. One of your new friends, loretta
Thank you!! I knew you would take care of this one...You are home my dear friend....between you and Sandy RI..we are in great hands...Thank you both..

Love, Kathy
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Old 08-23-2010, 09:23 AM   #7
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Hi hurting,
So sorry to hear that you are going through this terrible experience. When my RSD began, I also had such incredible sensitivity that I had pain when someone would just enter the room and disrupt the air. At that time, was so happy that we have electric baseboard heating as anything forced air would likely have sent me screaming to the garage!
I also had a big problem with PT. I developed RSD after left knee surgery and never had a lot of difficulty with the knee rehab itself, but the touching and air motion was so noxious. Add to that, my deductible was $30/session and I was prescribed 3x a week, that just didn't work out for me financially. Thankfully, this board did make me understand that I had to do some desensitization, so I employed my husband to be my inflictor (a job which he hated.) We started slow, with cotton balls and simple light air movement, then gradually worked up to touch of different pressure. There were times that I would scream into my pillow and it made my hisband feel horrid. But, over time, I did notice that I could tolerate more. Of course, there were still bad days where I had to wrap my leg in an ACE wrap because the touch of my pants moving when I walked was too much, but over time there was improvement. It's hard to stay with it because it is a painful process, but my thought is that I had nothing to lose. I was already hypersensitive-I could only improve.
Hope this helps-doing it at home let me set some pace, spread it out through the day, and saved me major cash when the budget was already tight.
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Old 08-23-2010, 05:58 PM   #8
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Hurting, Sorry to hear ur nerve didnt heal and that the desensitizing didnt work. Mine also was the radial nerve and i did/and still get desensitizing. My therapist worked slow-starting with very soft cloth for short time and i was the one that did it not him(that way i knew how much pressure i could take). I worked up thru different fabrics and then was able to use warm rice(not cooked but microwaved so it was warm on my skin) and that really helped. I was never able to do beans-to textured and cool. I also found hot water therapy really helped to desensitize my legs. My nerve surgery didnt work either but i know i have to desensatize so i can let things touch me. Hope things work out for you.
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Old 01-25-2011, 12:17 PM   #9
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If you have a chance email me or pm me I have questions I also had 2 surgeries before they diagnosed the RSD/CRPS






Quote:
Originally Posted by SandyRI View Post
Dear hurting,

If possible, try to find a PT that knows something (or cares enough to research) about RSD and treatment plans. Regardless of how you acquired it, you still need to work on desensitizing your affected areas. I injured myself close to four years ago, and clothes still irritate my skin when low pressure weather systems come through.

Lidocaine and Flector patches help quite a bit. My original injury was to my shoulder, and when I am having a bad day I stick a patch over it so that my clothes don't rub against my skin and cause pain. Sometimes my shoudlerblades and arm hurt, so I will put patches there also. I can use up to 3 patches a day for 12 hours.

I had 2 shoulder surgeries - both in the spring, one year apart. It wasn't until after the 2nd surgery that my ortho finally figured out what was wrong with me. But I will never forget having to start wearing warm, heavy clothes with the onset of cold weather here in New England months after surgeries and how badly it hurt. I would walk my dog early in the morning and just cry because it was so painful to have to wear clothes on my shoulder. Slowly I became fairly desensitized to the feeling of the weight of the fabric against my skin. Only another RSDer could understand what an ordeal that was!!

If you don't feel that your current PT has the right experience for the job, trust your gut. You've got to make sure that you have the right people in front of you for the job, because no one else is going to. Perhaps a discussion with your ortho or with a highly regarded pain management specialist in your area wil lead you to the best recommendation.

Let me know if you have any ?? xoxox Sandy
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Old 01-26-2011, 06:45 AM   #10
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From the moment I got my RSD diagnosis, I was sent straight to PT to have them desensitize my leg! It was TORTURE! The PT's would stroke my leg with all kinds of stuff (cotton woll, feathers, bubble wrap, water - you name it, they tried it!) and I would spend hours in tears screaming from the pain! I used to dread going to PT as it would flare me up for days on end.

Like you, I was told it needed to be done in order to get better and that it would all be worth it in the end ... certainly didn't feel like that at the time!

After about a year of constant desensitization, nothing was getting better so my mum got me a second opinion and I went to Great Ormond Street Children's Hospital and underwent these 3 weeks intense PT course. The PT's there are renound for dealing with RSD so they reallly knew what they were doing. I was told that the desensitization I was doing at my other hospital was wrong! It was explained to me that you need to be really agressive when doing it and not just stroke your limbs with feathers then have a break. You need to get straight into wearing socks etc. Touching your limbs with feathers can aggrivate things ... as was happening in my case.

After being told that, I was made to wear socks every day for a few hours. It was pure h*ll and I screamed all day long! After a few weeks though, things started to get a little better and I was able to tolerate things a bit more.

Even now, I find wearing socks to be extremely painful however I can tolerate them better than I could.

I think it's really important that you get a PT that understands RSD and knows your limits ... one that doesn't will just make things worse!

Hang in there and I hope things start looking up for you soon

Alison
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