Re: REactive Arthritis and other health issues connected

May 29, 2011

Hi

I'm new to this list as well, but I can sure see how useful it is to be able to

talk to others about our unique burdens. This group is good for that.

Cardiac conduction irregularities (such as arhythymia, tachycardia, or atrial

fibrillation) are common with ReA. They can be startling, but they are usually

easy to treat; just make sure your doctor is aware of them. I am taking

diltiazem, and it keeps my heart running smoothly.

I understand how you are suffering. For the most part these illnesses do not

demonstrate overt symptoms, so when people don't see anything wrong it is hard

for them to relate to your pain issues. Most doctors are not well trained in

this area either, so it helps to do some research on your own.

I have observed that several people on this list have a strong spiritual nature.

Like them, I have found much comfort in prayer and in reading the Bible. In

theology, there is something called 'theodicy'. It is: If God is all-powerful,

and if God loves me, then why does He let me suffer? Why does the World have

evil, sickness, hatred, war, and grief?

I have frequently read the First Epistle of . I don't know how well you

know the Bible; it's a small book near the end. It's only four pages, but it has

really helped me see why we suffer. There is a purpose to all this.

I have had Reiter's Syndrome (aka reactive arthritis) for over eight years.

Every day has been painful. I ran a custom cabinet shop for thirty years. I

loved my work. Now this awful thing has forced me into an unpleasant retirement.

Now I feel useless.

I find that writing about how I feel is cathartic. Yesterday I finished a poem

about how I feel. It starts out a little dark, but then gets better.

MORE

Craig H. Schindler

Grey gloom plucks out the days and weeks

And casts them to the floor.

Soon stands a portal no soul seeks:

The low'ring Mortal Door.

Once clever mind and busy hand

Supplied telestial store.

Now dust and rust and heaps of sand,

All as it was before.

Slow sickness steals the hand's emply;

They cannot earn a more.

But Earth and Time ere long destroy

The rich man and the poor.

In hope we seek our Lord to ask

His Graces to implore:

Account our every worldly task

Meet all we've come here for.

The eyes o'er glaze; the light doth flee,

And breath no more is sure.

A holy chariot bides for me

To Kingdoms of the Pure.

Then ope the eyes; effulgent rise,

Depart the body sore.

Citizen now of Paradise,

The weary burden o'er.

Though death the earthly family brake,

By death again restore.

The generations timeless make

A Family once more.

May 29, 2011

,

Your story is all too familiar -- not only from my own struggles over the past

decade, but from stories that I've heard from countless other sufferers of ReA

and similar conditions. You are FAR from alone.

Your disease is very real, and unfortunately, the attitudes you've seen from

other people are just par for the course with any condition that isn't

externally blatantly obvious to everyone's eyes, or have a " sexy " (a term I've

assigned to well-known and widely sympathized-with conditions like cancer, etc)

disease that they can (relatively) readily understand. It's not fair, in fact

it's downright awful particularly when it's a doctor being ignorant and not

bothering to do their homework to understand this disease because it's

supposedly " rare " -- but I don't think it's half as rare as most of them seem to

believe!

Many " mysterious " auto-immune conditions that blur the lines between the

better-known arthritic diseases are probably forms of ReA where the trigger went

unrecognized/unnoticed or incorrectly diagnosed. My suspicion is that the rate

of ReA in many populations is 3-5X or more what it's believed to be in medical

textbooks etc.

There are a lot of supplements that you can try...I'd suggest turmeric for

starters, which is a potent anti-inflammatory and very safe (none of the

downsides of prescription NSAIDs; it's actually good for your heart and

digestive tract). Others include Boswellia, D-Phenylalanine, Theanine,

Lactoferrin, Ginger, and Bromelain.

Since I think you mentioned that you're taking opiate pain meds, you should look

into Ultra Low Dose Naltrexone (ULDN/ULD-NTX) which can help make them work

better, last longer, and prevent the development of tolerance to them (causing

the need for higher doses to be effective). If later you need to go off the pain

meds for any reason, a higher dosage (1-5mg instead of a 1-100 micrograms as in

ULDN) called Low Dose Naltrexone (LDN) has some pain-relieving benefits by

increasing endorphins and has powerful immune-modulating properties that can

actually help treat conditions like ReA that don't respond very well to immune

suppressants.

Another adjunct to opioid pain medication is the use of various NMDA Antagonists

such as Dextromethorphan ( " DXM, " a common OTC cough suppressant), Memantine

(prescription medication normally given for Alzheimer's but is very effective

and safe for controlling/preventing/reversing opiate tolerance), L-Theanine, and

Magnesium. These control levels of the substances in your body that " oppose " the

action of opiates and make you more sensitive to pain after long-term opiate

use. Together with ULDN, these should allow your pain meds to continue working

almost indefinitely at the same dosage.

Not all doctors know about ULDN/LDN, and even fewer are familiar enough with it

to be willing to prescribe....but one way or another, it's very possible to be

connected with the resources to get the raw naltrexone and prepare it yourself

if necessary (extremely cheap). Check out the LDN mailing lists on if

you're interested, or http://LDNinfo.org/

I wish there were a simpler solution....a way to get people to understand what

you and the rest of us are going through. That's clearly something we're going

to have to work on as a group, helping the world understand our disease(s) and

advocating for solutions to the problems that face us -- both medical and

cultural.

In the meantime....hang in there! :-)

- from Maine (New England, USA)

May 31, 2011

I know just how you feel. I haven't personally experienced these issues, but my

kids have. As a mom, it tears your heart out! I hope I can help you to know

that things can get better! My son experienced most of your issues between the

ages of 12 and 15. At 13, he was suicidal and had to be hospitalized. It was

the worst time in our lives! However, he is now 18 and has been in remission

for over 2 1/2 years. He's graduating from High School this Saturday and

heading off to college in the Fall. I didn't know how we were going to make it

just a few, short years ago... Hang in there! I know he could not see a time

like this when he was in his dark place. Today, you'd never know how sick he

used to be unless you knew him at that time. Please feel free to write me any

time you need someone to talk to.

Myndi Fitzgerald

Ph: 317-503-3701

www.TheGreatProduct.com/gmfitz

Drink It. Feel It. Share It.

________________________________

From: SUSAN <sue04@...>

Sent: Sat, May 28, 2011 12:18:59 PM

Subject: REactive Arthritis and other health issues connected

Hi,

Im 38,female and was diagnosed with Reactive Arthritis in Sept 2008 and since

then it just seems like i'm fighting a losing battle,most joints have been

affected,I seem to have flares constantly, most days I cant even walk because of

immflamtion and pain in my knees,ankles and feet,I have several sausage and

hammer toes and have boutonniere deformity in three of my fingers. Also I have

keratoderma blennorrhagica on the soles of my feet and psoriasis on hands,groin,

feet,chest and in my scalp.I regularly have cysts in my eyes. I have been taking

methotrexate 22.5mg for about 2years, also i am currently taking sulfasalazine

2000mg daily,Nexium 80mg daily, dihydrocodeine, paracetamol,folic acidand

domperidome. In the last year I have developed palpitations and chest pain,was

told I have an epotopic begign arythmia. Also I have been having a lot of

stomach problems, after seeing GI spec and several undignified examinations and

tests I was told I also have Proctitis and acute gastritis. I am still waiting

for some biopsy results on samples taken from colon.Does anyone know if these

stomach and chest problems are linked to ReA or could it be completely seperate

Has anyone else had this. I feel like i'm back to square one with added

complications, is there no end to what this disease can do to you, I'm at my

witsend. I understand there are many people who suffer from this but I feel so

alone, people don't seem to understand how much something like this can affect

your life. I'm a single mum with for young children and sometimes life just

seems too unbearable. I have become quite depressed by all this and have

contemplated suicide several times, the only thing that seems to stop me is my

four beautiful children, I couldnt do that to them. Im sorry about the moaning,

I have nobody I can really talk to, I don't want my children to be burdened with

this,I cant really talk to my family as they all have their own problems and I

get the impression that they think Im playing it up, if only. I dont really have

what you would call a good support base. When I speak to people about this who

have no idea what its like, they seem to think in some kind of hypocondriac. I

feel like im being punished. I cant see any light at the end of the tunnel,

things seem to go from bad to worse. I feel silly sometimes bacause there are a

lot of people out ther who are far worse off than myself, however most days it

doesnt feel that way. Any advice or opinions would be gratefully recieved.

Thankyou.

May 31, 2011

Hi Myndi,

Congratulations on pulling your kids through.

I was wondering if it will be of everyone's benefit to list how they have

achieved remission. I always wonder what causes flare ups and what I can do to

achieve remission with my condition. Knowing what others have done to achieve

remission may give everyone ideas on how to achieve remission for themselves.

Mr O in Illinois

Â

________________________________

From: Myndi Fitzgerald <the7fitzs@...>

Sent: Tue, May 31, 2011 10:23:55 AM

Subject: Re: REactive Arthritis and other health issues connected