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Re: PT update new
      #303484 - 03/29/07 09:09 AM
michele

Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan

Mt hands are toast and I have to go see the acupunctrist but I copied this from my ra support group board.

Thanks everyone. I started off on the Lycra. I took it for about 6 weeks, started on a lower dose and went up. It was so expensive though and they said the gab was pretty much the same thing and MUCH cheaper. So, I have been on the nerve drugs since the first of the year. They make me dizzy, nauseous and completely out of it. I did start taking the gab again yesterday and I feel even worse today.

I am just out of the will to fight. I have been sick for three years without a solid dx. I have lost 5 babies. I have lost friends. My marriage is suffering. I have NO sex drive at all.

I was and am still trying to be hopeful for this new pain clinic. It hasn't gotten off to a very good start though. The first day I waited over 3 hours for my appt. They can't start any meds or iv infusions until the blood work comes back and just getting the blood took 3 days, 4 people, 12 pokes, passing out for 15 minutes, oxygen, my body is just so frail.

I was than hopeful for the new physical therapy (pt). I asked them how their pt was different from every other pt places I have gone to. They said the therapist was from Canada and they believe in treating the whole body and not just body parts. That the therapist spent the whole time, hands on with you instead of passing you off to an assistant. Ok, sounds good.

Went to my appt last night. After waiting 30 minutes, talking to others in the waiting room. I find out that THREE people had the same appt time I had with the same therapist!!!!!!!!! He turned out to be very kind, foreign, a bit hard to understand, but was very honest. He said that it seems, for whatever reason, that I have MANY, many different muscle con-strictures thought out my body. That is PROBABLY (he is guessing) what is causing the pain and swelling.

He wrapped me in some heat and left me laying on the hard table for 30 minutes, not comfortable at all. Than he spent about 5 minutes pressing on the con-strictures in my right arm. I have to say it hurt like hell! He said that because the muscles have constricted so much they have torn and caused fibrous tissues to form and they have to break up the fibrous tissues and that it is going to hurt.

My arm feels bruised today but I have to say I do have a tiny but more range of motion in my wrist and hand. He only is in that office wed and fri and I can not take time off on fri so I made an appt for next wed. I just hope that he actually has time to spend with me or I see no point in continuing to take time off work for it.

I do see the acupuncture person today in one hour. I was told that I should be able to tell if the acupuncture is working with in six visits. Ok. I will give it 6 visits with an open mind. I should be able to get those in before my 4-12 appt with the rheumy. If I have not gotten any improvement or a more solid dx, than I am going to fight to go to the Cleveland clinic.

I am so depressed. I see a zillion doctors, they all agree something is wrong but no one can even tell me WHAT is wrong, let along fix it. My mother has similar problems and is pretty much bed ridden, she is 55. Her problems started about the same age I am now. I look at her and I just can not imagine my life being like that in 20 years. If that's the case, I don't want life. The pain is too much, the depression is too much. The lack of proper dx after so many years and so many doctors makes me think I am insane. They have the technology to clone a person for crying out loud but they can not tell me why I am so sick??!!!

I am not asking to run a marathon. I am willing to do whatever treatments they think will help, to take whatever toxic drugs they throw at me, to do whatever alternative treatments. WHATEVER, I will do it. But I have to start seeing some improvement. I just can not go on like this much longer.

I will post an update when I get back from the acupuncturist.

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Taking it one day at a time.....

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Re: PT update new
      #303486 - 03/29/07 09:19 AM
Nelly

Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC

Have you ever been tested for gout? There was that show on Discovery Health, and the guy had gout. First he was tested and it was dismissed, then he was treated for RA unsuccessfully for years, then he was tested again and had gout. (Sorry, fibro moment, I'll be more articulate tomorrow.)

~nelly~

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Re: PT update new
      #303492 - 03/29/07 10:18 AM
Lisa Marie

Reged: 07/17/06
Posts: 1566
Loc: Lakewood, CO

Michele, I don't think anyone would blame you for feeling the way you do; you've been through SO much suffering. I wish there was some way I could help you! Just know that I'm thinking about you, and sending good thoughts your way.

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~~~~~~~~~~~~~~~~~~~~~~~~
Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)

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Re Acupuncture update new
      #303510 - 03/29/07 12:29 PM
michele

Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan

Well, I have to say it hurt more than I thought. Remember, I give myself shots and don't have needle issues but some of those really hurt!

The woman who did it is actually Chinese (not meant to be politically incorrect)and very kind. We talked for a bit than she started sticking the needles in. Started with my head, those didn't hurt, a few in my forehead, those were uncomfortable. Up and down my arms and shoulders, not to bad. Several in both hands and those just HURT, not sure if that's because of my other "issues" or just what. Up and down my legs, ok, fine. In my feet and ankles and a few of those were rather uncomfortable as well. Than, she pulls my pants down a bit and sticks 4 or 5 in my lower abdomen, not sure I liked those either.

She put on a warming lamp, some nice soothing music and told me to nap and not move. Ok, sure. ZZZZZZ. Oh no, my tummy starts making those really loud noises and my whole insides start feeling odd, like they were moving around in there. I panic and think what do I do if I have to go potty???????

Luckily, I didn't have to go but the whole time my tummy and innards were making all sorts of noise. I felt warm, tingly, sort of a zapping sensation at various body parts over the course of the 20 minutes I laid there.

Its been 2 hours or so and I still feel off. I feel dizzy, shaky, off balance and totally out of it. Lets hope that means its working!

I talked to the front desk girl and explained I was a little upset about the amount of time the physical therapist spent with me last night and she apologized and said there was a scheduling error. We made appts for the next month and I watched her block off an hour of time for me with the therapist. We also made appts for me to start the massage therapy, which sounds absolutely wonderful. So, Wednesdays I will go there at 4, get my massage therapy and than do pt at 5.

We also made appts for the acupuncture for every Thursday. I plan to continue it even though it hurt and I feel weird. I am trying to stay positive that it will work!

Ok, feeling very fuzzy.........Lets hope that's a sign its working!

Nelly, will double check the gout thing! Thanks!

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Taking it one day at a time.....

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Re: lj new
      #303511 - 03/29/07 12:34 PM
michele

Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan

I did ask both the neuro and the pain doc about that and they said if I can tan (just went to mexico and tanned) then I can't possibly have it. Although I read there are types of it that don't affect your skin like that so I really don't know what to think?!

They all seem to think some sort of auto immune and connective tissue disease and they are pretty sure about the serum negative ra dx but there is obviously something in addition to that as well.

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Taking it one day at a time.....

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Re: Debby new
      #303512 - 03/29/07 12:37 PM
michele

Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan

Thank you for the kind words. I will have to remember you live there so if we decide to go there, hopefully you can help us with directions and maybe suggest a place to stay. I live in Royal Oak, which is northern Detroit suburb.

Do you know how the clinic works? Would they keep me there until they run everything they need and get answers? Or would it be just like regular doctors appts?

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Taking it one day at a time.....

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Re: Re Acupuncture update new
      #303513 - 03/29/07 12:39 PM
Nelly

Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC

Acupuncture has always been something I wanted to try, but I'm not sure I could do it on my front side!! I could use something for my achin', achin' back tho.

Let me know about the gout test-- the way they know you have it is uric acid present in the bloodstream. It's overlooked in young patients, and can come and go. It leads to painful swelling, "cottage cheese" cartilage buildups in the joints, and general joint pain that doesn't respond to pain relievers.

I was also going to ask you if you had protein present in your urine. That is a kidney thing and also something I saw recently on TV...

~nelly~

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Re: Re Acupuncture update new
      #303515 - 03/29/07 12:47 PM
michele

Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan

Apparently they do the needles along your meridians, where the chi is supposed to flow. I think even if you do it for your back, they would probably stick your front!

Uric acid, I will go through my blood work (I have copies of it all) and see. I wrote it down and if not will ask the rheumy on the 12th.

The last urine test I had was back in the fall and it was ok than. However, the new pain doc did say my kidney's weren't right.....

--------------------
Taking it one day at a time.....

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Re: Re Acupuncture update new
      #303518 - 03/29/07 12:51 PM
Nelly

Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC

I feel you're so close to finding out what's up. They must be missing something they've tested for before. I'm hoping you find another piece of the puzzle that's missing!

I've almost never had anything but a "normal" test, and it's frustrated me all my life. I actually celebrate when they find anything wrong with me... That's gotta be so weird to normal people!!! No one with pain should have to sit and wonder WTF is wrong!! (!!!)

{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}

~nelly~

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Re: Re Acupuncture update new
      #303522 - 03/29/07 01:02 PM
michele

Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan

Well, glad to know I am not the only one that hopes for abnormal test results! I know that's not the way to look at it but darn it, I just want to know what is wrong. Actually, if they could make me feel better, I don't care what the hell they call it!!!!

I am really willing to do just about anything. Frog leg under the bed? Voodoo dolls? Shave me head, most of my hair has fallen out anyways? Hell, I'd run around naked in the rain signing at the top of my lungs playing a banjo if I thought it would help!!! I guess though if I could actually do the above for mentioned act, I would definitely be feeling much better than I am now!

I am so wrong at the moment!!!! Is it possible my body released toxins after the acupuncture therapy? I feel like I am tripping!!!!!!! That might have been a good feeling when I was 20 but well, not so good now, especially at work!!!!

--------------------
Taking it one day at a time.....

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