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Meggie
Regular Member


Date Joined Jul 2008
Total Posts : 408
   Posted 10/3/2008 4:33 PM (GMT -7)   
I started PT for my shoulder and neck today.  The therapist told me some things I'm not sure about.  During her assessment she discovered (I already new) that I am hypersensitive to everything.  When she did my reflexes, my muscles had a strong reaction.  I told her that I have a difficult time with touch (sounds, noice and smells as well), somedays are worse than others.  She advised that I start rubbing my skin to condition it to touch and said her goal was for me to be able to take a wet loofa and scrub my skin and have it not bother me.  This sounds insane to me, I can't even image that   shakehead but she said if I don't that things would get much worse and eventually I would not be able to take the feel of clothing on me.  I already have problems with clothing but it's manageable.  What do you think I should do?
 
Also, the therapist told me that the ortho doctor marked my chart as having cervical spondylosis, but I have had an MRI and it showed nothing.  So I'm not sure what to think of his diagnosis.  The therapist said I definitly don't want cervical spondylosis.  Do I call the doctor and ask him why he marked that on my chart?
 
I did get a little good news from the therapist (I guess you could call it good).  My right shoulder is extended with the collar bone pushed forward.  My shoulder blade doesn't even touch the floor when I lay down   shocked  .  I never noticed this before.  The good part of this is the therapist can actually help with this and it should relieve a little of the pain, so I'm hopeful for this.
 
It's been such a confusing day, I wish I had a hot tub or whirlpool tub because I could really use some relaxation.
 
Thanks for listening!!
 
Meggie 

kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 10/3/2008 4:43 PM (GMT -7)   
Meggie,
 
All of this sounds weird to me (just my opinion).  I know this is a stupid question, but did you tell her that you had fibro?  My PT told me that there are no exact, "real" exercises for fibro, but the best thing to do is use a pool to take the pressure off of your joints.  But, I don't understand why scrubbing yourself with a Chore Boy-LOL-will make your sensitivity better. shakehead   Obviously, I'm not a PT, but I am a fibro patient, and that just sounds too painful.
 
As far as what your doctor wrote, I would definitely question him about the spondylosis.  With today's revolving door medicine, doctors are seeing patients every 15 minutes, and perhaps he made a mistake.  I know that's shocking-a DOCTOR making a mistake? rolleyes    Believe me, it does happen-although, he'd probably never admit it. nono
 
I think we can all empathize with your confusion and frustration.  I hope you get some answers, soon. :-)
FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
 
"I'll take the Chivas instead"
-Kelly Clarkson


Meggie
Regular Member


Date Joined Jul 2008
Total Posts : 408
   Posted 10/3/2008 4:56 PM (GMT -7)   

Kelly71,

Yes, the therapist is aware in my fibromyalgia and is a supporter.  I guess that is why I'm so suprised by this request.  I agree with you, I think it will only make things worse.  Maybe I should go to her house after I scrub my self up.  My mood might change her mind devil .

Meggie


Fussy
New Member


Date Joined Jan 2008
Total Posts : 18
   Posted 10/3/2008 6:29 PM (GMT -7)   
Hi Meggie- I can completely relate to what you are going through. I mean the sinsitivity to everything. I have the same exact problem, only mine is only on my right side. It is a result of a very large lesion on the left side of my brain that caused nerve damage. I'm not saying you have a brain lesion. You already said you had a clean mri. That's awesome!! The weird part is I just saw a pt/pain mangement dr the other day for the first time and he told me to do the same exact thing. To constrantly be rubbing my right side to desensitize it. My gut reaction was that this guy has no clue what I go through just to take a shower. Then I saw my shrink and whined to her about it and she told me something interesting. Aparently autistic children don't like to be touched either and one of the things they will tell parents to do is to touch them and rub them to get them more used to it. Well, now I understood why he wanted me to do this. I still think he is crazy for expecting me to, only because the "yucky feeling" it would cause would be absolutely exhausting. Not to mention PAINFUL! I just wanted to share with you that you are not alone. Hang in there and hope you find some relief. I can only recommend super soft clothing. :)
Candie


Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 10/3/2008 11:21 PM (GMT -7)   

Meggie,

I suggest you try the rubbing, but with something soft.  I'm sure she doesn't want you to use the loofa right away!  But who knows, maybe it will help.  I would use chennile or silk or something really soft.  It might feel good after all.

That's good news about your shoulder.  I hope you get relief from it soon.

Sue


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40573
   Posted 10/4/2008 2:59 AM (GMT -7)   
Meggie,

I agree with Statgeek, I think that you should rub your skin with lotion or oil to start. You don't want to get to that point where your clothes bother your skin. So I think there is something to this. Eventually you will work your way to the luffa. Then your skin wont be so sensitive, but be gentle with yourself. Go with lotion or oil first. I hope this helps some.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Meggie
Regular Member


Date Joined Jul 2008
Total Posts : 408
   Posted 10/4/2008 6:32 AM (GMT -7)   

Thank you everyone!

It sounds like maybe I should try it and yes the PT did say start with something soft.  Her goal was to get me ok with a loofah.  The thought of this just makes me gringe shocked .  I think my most sensitive spot would be my feet.  I need to wear thin socks and seemless if I can find them.  I need to adjust my sock several times before I can be comfortable in them.  The seem needs to fall just right at the tip of my toes or I can't stand it.  Maybe I should start with my feet, it would be nice not to spend a lot of time trying to get my feet comfortable. 

I am going to start out slow but I will let everyone no how it goes, boy I'm nervous about this blush .

Meggie


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 10/4/2008 6:38 AM (GMT -7)   
Meggie,
This method of desensitizing the nerve endings is actually useful and it works. She is correct about the increased sensitivity over time. As with so many things affecting our lives with fibromyalgia our initial reaction to symptoms is the exactly wrong thing to do. Movement hurts so we want to stop moving. Doing this will lead to us becoming crippled up and unable to do anything. Skin sensitivity drives us nuts so we want nothing on our skin. If we do this eventually the very air changes in temperature will make us uncomfortable. You have to softly rub the area to remind the nerves what gentle touch feels like. This is just like mild exercise... no fun but very effective.

If you do not desensitize your skin you will have many more problems and much more pain in the long run. This condition can get really out of hand. Better to stop it in its tracks now.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


leemadd
Veteran Member


Date Joined Sep 2008
Total Posts : 532
   Posted 10/4/2008 6:55 AM (GMT -7)   
My neighbor who is 15 has RA, Fibro, diabetic, Ect Went through a six week Pt At childrens in Philadelphia she was dropped off at 7am and picked up at 4 it was very intense It was very painful and tiring to the point where she would be throwing up on her way home, It is an experimental program that they are doing The thoughts are to stretch where you should be able to even if it hurts touch even if it hurts They think that if you are re trained to except the pain that the flares may not be so bad ect... She has been done for a week and is now back to playing goalie for field hockey and states that the short six weeks was worth it because she is now doing things a normal teen does.

Meggie
Regular Member


Date Joined Jul 2008
Total Posts : 408
   Posted 10/4/2008 6:57 AM (GMT -7)   

Jeannie,

That all makes sense and things are getting worse.  I wish there was a handbook for all of this stuff, it certainly would make things easier.  If I had known this when I was diagnosed, my sensitivity may not be so bad now.  Does this apply to noise and smell sensitivity also?  I'm really bad with the noise also, and it brings on migraines.  I have become an expert on putting away dishes without making any noise.  Just wondering?

Meggie


solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 10/4/2008 8:20 AM (GMT -7)   
Hi there Meggie. I am glad that you brought up your visit with the pt as I was just thinking about how it went for you. I don't have severe problems with touch myself but am very curious how things go for you. Please keep us posted about it. As far as the cervical spondylosis goes, it is of course possible that the dr made a mistake but you should remember that MRI's are not 100% perfect in picking up everything and reading them isn't an exact science also as much as we would like it to be. You could have 4 drs. look at the same MRI and end up with 4 different readings. It's frustrating to be sure. Scans are just one tool in the diagnostic process. He may have picked up on something in the exam or your history? Also, it is not the physical therapist's place to diagnosis anything. That's the doctor's job. I am glad for you that the pt believes in fibro. In the 3 years since my diagnosis of fibro by 2 rheumys, I worked with 3 physical therapists that told me I didn't have fibro. That was frustrating and confusing but I decided to listen to my body and the specialists. If you are concerned about the note on your chart, I would call the dr to help clarify things for you. You sure done need a question like that hanging around in the back of your mind. Lisa

Meggie
Regular Member


Date Joined Jul 2008
Total Posts : 408
   Posted 10/4/2008 6:34 PM (GMT -7)   

Hi Lisa,

What makes me nervous about the ortho's diagnosis is that he spent very little time with me and I brought up the cervical MRI to him so that he was aware of all the tests I had done.  All that he seen was a breakdown of the MRI on paper.  The results state that there was nothing amiss with my neck.  I also told him that I had an EMG on my right arm because of tingling and numbness in the hand.  The EMG results showed nothing wrong with the nerves from my neck to my right hand; and I told this to the doctor but he insisted that there are nerve problems.  He moved my arm a few times and read the shoulder MRI and determined that I needed cortisone and PT, this was a total of about 5 minutes.  I left the office feeling very ignored.  He didn't even look at my history (the sheet his office made me fill out).  Another thing he told me, that may be true, is that the nortriptyline I'm taking is for the nervous system and that is why my GP is having me take it.  My GP told me it was to help me sleep.  So who is right smhair !  I was so depressed the day following that appointment that I told my husband that I just give up.  I will live with the pain, I'm tired of doctors not listening to me.  I will give the PT a try but if it makes things worse, I'm just going to go it on my own.

So I probably won't see the ortho doctor again, I just wish I could erase his diagnosis from my records because I think he didn't have enough time or information to make that diagnosis.

I will keep everyone updated on the therapy, I'm very interested (and uncomfortable) with this theory of desensitizing.  Could this be helpful with other symptoms?

Meggie


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 10/4/2008 9:36 PM (GMT -7)   
Meggie,
I'd wear soft foam earplugs when emptying the dishwasher if I were you. I have a hearing loss so sounds don't bother me. The sensitivity thing is something I learned about from my daughter who was a physical therapist assistant student at the time. She had a patient who had an extreme case of this (can't remember the clinical name for it right now) and this lady she was working with was almost out of her mind with overreaction. MC worked with her for several weeks and gave her "homework" to do and the lady actually improved. Then, when MC had her incomplete spinal cord injury she found herself in this exact same boat! Now she is treating herself with the stuff she learned in school. As feeling has returned from her cortisone injections she has this super skin sensitivity on her legs. Shorts helped in the summer but as the weather is getting cooler she has to learn to wear jeans again. NO FUN! But she is sticking with it because she has seen the alternative.

Just do the best you can each day and that's all you can do. And unless the doc can read minds, he can't know why your GP put you on nortriptyline... right?
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 10/5/2008 2:44 PM (GMT -7)   
Hi again Meggie, I'm sorry that the ortho didn't give you the time you felt like you needed. That is very unfortunate since you waited how long to see him. Bummer. I thought of something after I posted to you last. The rehab specialist that I go to uses a technique called Graston that involves the use of a stainless steel tool that looks like a large blade(for lack of better words). It is used to help him locate and break up scar tissue in muscle. He would run it back and forth over my leg. He told me that doing that also helps to desensitize the skin. Even though I'm not as sensitive to touch as you are, it did seem to get less painful with each treatment so maybe there is something to that whole theory. Please do keep us posted on your journey with that. also please don't give up on seeking help. I'm sure there is someone out there who will be able to help you but you just have to keep looking. It took me a long time to find someone able to give me the help I need and I am finally making progress with the pain in my back and hip. Slow but it is progress where as before I was making no progress. Please don't give up. I'm glad I didn't. Lisa

Meggie
Regular Member


Date Joined Jul 2008
Total Posts : 408
   Posted 10/6/2008 9:07 AM (GMT -7)   

I am feeling more hopeful today.  I have had some time to think about everything.  It just gets frustrating when professionals treat their patients with such disregard.  I think I have seen to many doctors and had to many wrong diagnosis's.  Oh well, I can't go back and change things so I will make the best of what I do have :-) .

Thanks for the support!

Meggie

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