to plus A TIP FOR ALL OUT THERE

[Guest guest]

Hi

Let me start with a BIG SORRY for the delayed " thank you " that I owe

you, for the answers you gave me to the " muscles spasms " post.

Regarding your first question, the GI problems I get when I am on

meds are:

1. Bad stomach

2. difficulty in digesting

3. disphoria (can't breath after meals)

4. if I lay down in the supine position or if I barb (excuse me)

after meals, I feel food coming in my thought (I was diagnosed

with " palindromisis " –don't know in English- that means the valve of

my stomach doesn't close very well, so food passes out of it).

5. loss of appetite

6. than comes the gastroscopy (it's an examination that the GI

doctor does with a camera going down your stomach)

7. and finally the diagnosis is " gastritis " (I have actually

seen my red and inflamed stomach) that has to be cured with other meds

I also had a positive " helicobacter " test, which was treated with

antibiotics for 15 days, maybe more, I don't remember.

Then there is always the terrible pain and movement that I have in my

intestines, unbearable some times! Other times I run at the toilet

and others I get constipated.

I also had a percentage loss of peripheral vision- damage deep in my

eyes – which was treated and stabilized with cortisone pills and eye

drops (the doctors here said that it could be from a medicine called

PLAQENIL that I was taking for 6 months)

Here is the reason why I said that I wasn't so clear in my first post:

1. The spasms that I have don't start alone as I'm relaxed in a

resting position but they happen involuntary whenever I use a muscle

for example if I go down the stairs my legs go crazy (trembling) or

when I' m lying supinely on the bed and lift my leg to 45 degrees it

sakes up and down but again when I'm relaxed nothing happens.

2. Remember when I said " joint stiffness " …….. Well, I meant

inability to move my joint due to enormous pain!!! As for

elasticity…….. I was called `the circus girl' at school and of course

I still am!

The explanation for what you have told me (being a rare exception who

has found relief in exercise) should probably be that (apart from

being a personal trainer, a fitness testing specialist myself and

currently a Sport Science student, so it easier for me to perform the

exercises in a safe mode thus make less mistakes) I once had the

will, the power and persistence (after my EDS specialized Doctor -the

one in USA- recommended) to start exercising, daily, even with a pain

scale of 19 (from 1 to 19) and most importantly I was laky enough to

have an excellent, talented Ph.D Sport Psychologist , Msc Human

Nutritionist (and other studies), next to me, who helped me and still

does as no other can and he happens to be my husband.

We were in a (telephonically) contact with the Doctor who I must say

was and is very clear about the benefits that EDSERS get from

EXERCISE (at least type III, I never really asked about the other

types) and has been so kind to me providing all this info. So after

long and hard work I earned my arm back (imagine the pain……..I

couldn't even move it for a period of 1 ½ year and it became atrophic-

skinny- I lost my sleep as I couldn't find any position that didn't

hurt, it is only a year since I managed to start sleeping again, not

much, but I'm happy, and all that with no sleeping pills just

Chamomile tea and stubbornness) at the same time, when stability

improved, since my muscles were strong again to hold the joint.

SO A TIP FOR ALL OUT THERE………if your doctor has agreed that you

could start a training program, then you should find a good trainer

(or even better, a qualified for special population) who is willing

to understand the seriousness of our condition, work with your doctor

and plan a careful, slowly progressive training program (working

always in the safe range of motion and body posture) and screening

your pain for each joint, at every session with the Borg's scale -

that is 1 (no pain at all) – 19 (lying in bed)-than he/she can

numerically understand your pain and your progression concerning the

program and he/she can alter it (if needed) for the best results.

Don't forget this is a self tested experience and a recommendation

from a specialized Doctor in our syndrome!

So now the big question, why did I stop? I was feeling better,

actually I was in the best period of my life, so maybe I thought I

was cured………. ha, ha, ha, maybe I believed work is more important

than to give an hour to my self………. ha, ha, ha. So what do I do know,

when I see the hole situation coming back again, like a film that I

have already seen many times now? I don't have the same will or

power. I just started yesterday Viox 50 mg (NSDA), Losec (proton

inhibitors, I think), and Lonalgal (codein) and I already have a bad

stomach, I'm in pain and every day I feel more tired, it is

frustrating, I am only 30 years old and just 5 years married, plus I

have this muscle spasms… and tonight I am not sleeping but at least I

am " talking " to some people who listens and understands me.

Thank you for that…….. and good morning to all of you!

Tia

PS: Oh, , what is Fentenyal patch and what is oxycontin and

what do you mean when you say " save for my back " .