Welcome /Life style changes

[Guest guest]

Hi ,

We are so glad you found us. I am 42 and have had RP diagnosed for 3 years.

It sounds like you had the same experience as most of us on the list --

diagnosis was delayed. It took me 3 years before I was diagnosed. My main

lifestyle change has been erasing stress from my life (not easy) and I went

to a nutrionist. I had taken lots of pills (anti-inflammatories,

steroids,too many antibiotics and other pain meds.) These extra pills

knocked my body for a loop. The nutrionist tests your blood and found I had

zero of three essentials minerals. This caused lots of fatigue, sleep

problems, restless leg syndrome and overall depression. After doing

everything nutrionist said -- supplements, herbal remedies and finding an

outlet for stress (yoga) I erased the fatigue, sleep problems, restless leg

and depression. I didn't believe it at first but it is two years now and my

rheumatologist and cardiologist both can see improvements in my health. They

will tell you the nutrionist workup was the key to along with following my

rheumatologists advice of pred forte for eyes and placquenil during a

flareup. The RP is there but only relapsing now vs. chronic.

My advise -- listen to your body and seek advice from medical specialists.

If you think the Doctor isn't getting what you are saying go to another. I

saw one rheumatologist (this was my third opinion) who wasn't listening. He

took blood samples and sent me home in pain. The pain in my leg turned out

to be a blood clot. He called me one week later and anxiously said to take

an aspirin and if I feel worse to get to the ER. He saw me the next day and

told me he had found an abnormal blood test which he had never seen before --

anti-cardiolipin enzyme. He sent me to a cardiologist who sent me to a blood

specialist. My ears were bright red on both occasions I saw him and I asked

him what would cause the redness. He dismissed the ear redness. He missed

the RP diagnosis and couldn't sort out the symptoms to get a handle on the

situation. Doctors are only human. The RP was finally diagnosed by my 4th

rheumatologist. Thank God for health insurance.

Well ask any questions -- there are many kind hearted people to help you get

control of your RP symptoms.

Take care,

Cheryl L. (Litchfield, NH)

[Guest guest]

In a message dated 7/29/01 6:26:45 PM Pacific Daylight Time,

mrsclewis@... writes:

<< After doing

everything nutrionist said -- supplements, herbal remedies and finding an

outlet for stress (yoga) I erased the fatigue, sleep problems, restless leg

>>

Cheryl, do you mind if I ask what you are taking.? I am currently doing

Tai Chi for stress and it helps tremendously. Just curious as to what you

are on.

Thanks for your wonderful post... It was really informative.

hugs

[Guest guest]

Dear Cheryl, sounds like you are on the right track. Wish I was that disciplined. We could all take a lesson from you on how to treat our bodies, no matter what we have. Good luck to you....Sue Marth