New OurMyositis member

[Guest guest]

Hi guys, I am hanging in there. It has been three days at home trying to

get organized and get everything put away. It is amazing how everything

multiplied in the trailer on the way home, LOL.

I am finally feeling like things are getting under control. I got the

grocery shopping done yesterday with 's help and my cleaning lady is

coming on Wed so we have to have everything put away and up off the floor.

She does ALL the cleaning, it is just I want everything to be out of her way

so she can do a good job.

Tomorrow I have a massage appointment and need to go the drugstore.

Unfortunately these are necessities. Tuesday is my specialist appointment

and Wed. is 's middle school picnic and orientation. It is a busy

week. I am not sleeping too great, but am more relaxed at home and can

escape from the noise of the children when I need to which is a life saver.

BTW I didn't do anything but instruct the boys where to put things. I only

helped put things in my trunk because I didn't want things like the

souvenirs to get broken. But I didn't touch a single heavy item. I have

been asking for more help here at home and expecting the boys to carry

laundry etc. They are pretty good about it most of the time, they get even

better when I offer some incentive like going to the book store or Wal-Mart

so they can spend their allowance. I don't let them go unless they are

getting along and willing to help me. So far it is working well. They seem

to be very concerned about my balance problems.

My appointment with the specialist is this Tuesday the 29th. I will be so

glad to get this appointment over and done so I will know if it was worth my

time. My worry is that I KNOW that I need a different treatmeant regimen

and if he is not the doctor for me, then am back at square one. My family

doctor is great, but admits he doesn't know where to go from here and he

knows we cannot keep me on 60mg of prednisone forever. Please pray that all

goes well with this appointment. I have lost count how many of these

doctors I have seen in the past who want to say there is nothing wrong, it

is just fibro-live with it, or I think you should see a pschyatrist

immediately (Yeah right so he can talk me out of giving you a swift kick in

the pants!!!)

I am so happy to be home and to be back online. I definitley miss my lists

when I am away like that.

Gentle hugs,

Fern

[Guest guest]

Jackie,

Trigger points can be close to the top of the skin or much deeper where it

is hard to locate them. The are VERY painful and simply having a therapist

work on them is often not enough treatment or not the right kind of

treatment to give you relief. In some cases, when the techniques are used

improperly, it causes the symptoms to increase.

The other possibiltity is that you have calcifications that are forming

right under your skin. These too can be very painful and are hard to treat.

Many patients opt to have them removed whent he pain becomes too bad or when

the knot is just too cumbersome to deal with anymore.

As far as the therapy goes, it is very important to find a therapist who has

the best credentials and isn't afriad to talk about their training. They

need to know what fibro and myofascial pain are and if the don't or they

seem to be guessing, find someone else. You need someone who truly knows

how to work on you. Many fibro patients cannot tolerate a very deep massage

and that is where it is so important to find someone who will communicate

with you and be willing to adjust her routine for how you are feeling.

Your doctor's comment about the knots not being in the usual places for fms,

it absurd. Trigger points can occur anywhere on the body where there is

muscle, fascia, tendons, or ligament that have connective tissue. Also it

sounds like he doesn't know the difference between a trigger point and

tender points. Tender points are 18 spots on the body that when pushed are

very painful, however, they usualy do not hurt all the time or refer pain to

other areas of the body. Trigger points are much more painful and radiate

pain to other areas.

BTW the swallowing difficulties, the lung problems, and the symmetrical

muscle weaknesses really do sound like a myositis disease.

Gentle hugs,

Fern

[Guest guest]

Please WELCOME our newest member, rdohna@..., to our group. When

you feel comfortable please tell us a little bit about yourself. My

name is Vicki, list owner. So feel free to jump in whenever you feel

like it. We have a great bunch of people here. We hope you enjoy your

stay.

[Guest guest]

Please WELCOME our newest member, hchapple, to our list. When you feel

comfortable please tell us a little bit about yourself. We have a great

bunch of caring people and we look forward to hearing from you. We hope

you enjoy your stay.

Vicki (list owner)

[Guest guest]

Please WELCOME our newest member, mjboyce25, to our list. When you

feel comfortable, please tell us a little bit about yourself. We have a

great bunch of wonderful caring people. My name is Vicki (list owner)

and we hope you enjoy your stay.

[Guest guest]

Ev.... I'm sure everything will be fine. I do know about not being

able to move fast. I think that bothers me the most. I thought the

tornados only hit in the summer months...goes to show you how much I

know about tornados. I prefer the earthquakes myself. Hope your

having a good day and feeling much better.

Take care,

Vicki-pm

[Guest guest]

Please WELCOME our newest member, SueS36695, to our list. My name is

Vicki (list owner) and we're happy to have you aboard. When you feel

comfortable please tell us a little bit about yourself. We have a

wonderful bunch of people here.