another uodate (long)

[Guest guest]

Hi again,

It has been quite a while since I shared my life with y'all But there are very

simplye reasons:

1. Terible fatigue

2 difficulty with typing - loss of coordination has caused me not to be able to

write or type without alot of typos. (and for some reason, this mail server does

not have a spell check!!!

3. Trying to get ADL questionaire completed.

4. The last time I shared I was critized and terribly hurt by one person who

more or less told me that I expected too much from my doctors- like I demanded

the attention of not only the doctors but every one in their office. I should

not be complaining (espically about the doctors) , that I complain too much and

I expect too much from my doctors and to get over it and get a life.

I thought these forums were places where we who are in constant pain and have

all these problems can safely come and vent and cry with each other without

critism ect. I warn people with the subject that it is long and everyione had a

delete key. If I am wrong, this post will tell me and if understanding IS here I

know I am the right place, but I can't stand the demeaning and critical comments

..

first thing is the new diagnosis =- i finally get into the rheumotologist. while

we were sitting in the car before we went into his office- I had the worst Left

upper arm pain - this one went from the ewntire shoulder joint to my upper arm,

I sdcreamed -almost dropped a can of pepsi I had and then just sat there and

cried waiting for the severe pain to go away so I could walk in.

I got into see the doc and we reviwed the surgery history - and even then he

stoped and said that I could have fibro - just from all that I have already been

thriough.

He then asked where I felt the pain and some other questions- he then checked my

reflexes and finally checked for the tender points. I guess I really didn't

realze how much pressure someone has to exert to check the tender points. But

bottom line- I understand that to be diagnosed a patient has to have 11 of the

18 tender points positive. He told me that I had ALL 18 tender points positive.

He then told me that the fibro was caused by all the pain and stress that I have

been under.

He changed the anti-depressant given me by the GP (celexa) to elavil to see if

it would help me sleep ( and if that didn't help he suggested a psychiaty visit

for a possible sleep disorder, But the Elavil has helped. He then added Naprosyn

500mg.

I did not think the Naprosyn was working until I ran out and it was about a week

before we could get it refilled. This week - all my joints have hurt so bad!

I then saw 2 new orthopedics(same group) who I hoped would find out what was

causing my severe L upper arm pain spasms.(and be a second opinion on what the

ist ortho docs did) Boy, was I wrong. The doc who did joints- according to him

the problem was in my neck- end of story.

The second guy was just a jerk- when he ask what was wrong, I started telling

him that I had severe left upper arm pain, neck pain and back pain- he

interupped me and told me he only had time to take care of only one of my

problems. The scar from the rotator cuff surgery look very abnormal and I asked

him to look at it and see what I should do-( when I raise my arm the scar is

drawn down into the arm - the scar is also turing into a keloid)His response

" well it look like the surgeon wanted to sew it together like that. " He looked

at one of the films(I brought 3 different sets of films) and then arogantly told

me " You don't need surgery and I don't treat anyone unless I can operate on them

($$) so I am not going to waste my time on you " (what an ass)

My next appointment was with my PM doc and we ganged up on her- my husband came

with me since we wanted answers. I share with her about the fibro, but she was

mumbling something about how maybe I could have had the fibro before all mu

orthopedic problems occured and this made the pain from the ortho problems worse

and now it is why I am in so much pain now which is still not under control.

(this does not make sense since before the 1 st surgery, I was working 8-12

shifts in L&d as well as some supervisory responsibilities- I am a Registered

Nurse.) I know that she and the ortho doc who referred me have been in contact

with each other. But this sounds like she is trying to blame the fibro for all

my pain problems before the orthopedic surgeries and after???????????

We then started talking about the arm problems and what can be done, I also told

her about the neck burning.She asked about other orthos and I reminded her what

happened and she responded " oh yes- I have asked several ortho to see you and

they have all refused because you have had surgery. " We asked her about

acupuncture as a treatmnet fo my painand she told me that was a bad time to

cinsider this since her acuouncture doc quit working with her.

She then decided to order MRI of the shoulder, upper arm and bracial plexus.

These were with and without contract - something that would take at least 3

hours. Since she wanted the closed MRI, I had to be sedated because I am

clautrophobic. I thought it was okay, I don't remember much , I woke up twice

but didn't freak out juet went back to sleep.

That afternoon, I almost sleep the entire day as well as several days - I had so

much arm and esp. back pain - awake, I cannot lay on my back very long- but

during this test I was on my back the entire time.

According to the PM doc, The test only showed a bursitis which I don't know

whether it could be causing the arm pain or not. Everything I have found on this

just says any problems cause by this are at the site. She wants me to come in to

have the site injected.

I had the MRI result also sent to my GP and he called and he also told me about

the bursitis. BUT he also told me the MRI shows a small herniation at C5-C6 -

why would the PM doc ignore the diagnosis of herniation-even if it is small.

What is interesting is I had a previous MRi done which showed " spondylotic

changes at C4-C5. (no mention of any problem at C5-C6) this one was done in

April, the most recent July 3)

Does this mean I am falling apart as we speak???????????????

I am having many more arm spasms, they hurt so bad and no one knows what is

causing them. My left hand is even involved- I cannot lift or hold anything with

my left hand-it just hurts too much.

The fibro has complicated mu life so much - memory loss, lack of coordination,

urinary freguency, sinus problems, muscles stiffness, increase ibn the frequency

of my raynauds symdrome ccuring- even from just eating ice cream, insomnia,

irritable syndrome, recently started treatment for asthma symptoms mostly at

night, Major increase in bruising - (and I can't find many people with fibro,

who have this symptom of bruising), hair loss, muscle cramping at night, and

muscle twitching during the day, inability to be around cigarette smoke,

inability to be in a cold enviroment(even if it is just an air conditioned

grocery store) -it increases the Raynauds as well we the l upper arm spasms.

Well, that is my life, right now. We haven't paid this month's mortgate payment

so we could pay for the Cobra to see if another month would give us the answers

we need.

I have worked on this letter since 8am off and on since my neck was burning. I

think I better stop now.

Thank you in advance for any suggestions, and definately just support would be

appreciated.

--

__________________________________________________________

Sign-up for your own FREE Personalized E-mail at Mail.com

http://www.mail.com/?sr=signup

Save up to $160 by signing up for NetZero Platinum Internet service.

http://www.netzero.net/?refcd=N2P0602NEP8