Re: One year since diagnosed and questions

[Guest guest]

Bill, it is hard to adjust to not being able to do what you've done in the

past. I have quite a few members in my family that have AS. We all are very

different. My brother's AS (age 59)seems to have gotten better after his lower

spine and lumbar section fused. He is quite bent over (kyphosis) but, he

doesn't seem to have the over all pain that I do, nor does he have any trouble

with his eyes, knees, etc. He took up motorcycle riding a few years ago and

roams the countryside for hours. He drove his Harley from Tampa area to the

Florida keys! I couldn't ride for 10 minutes without being in excruciating

pain.So, you do have hope for better tomorrows. My sister's initial pain has

left

(age 60), however, she is beginning to have pain in her hips and knees. After

the initial episode of AS....she stopped taking NSAID. She had uveitis, but

not as chronic as mine got. She's 10 years younger than I am. Another brother,

(age 68) has had two knee replacements, three back operations, two neck

operations, and one ankle operation, etc and pretty much spends his time in a

comfortable recliner watching TV. He was very active when he was

younger...hunting on horseback in Montana, deep sea fishing on his own boat,

etc. The last

10 years has been difficult for him. He doesn't complain of pain....but we

all know he is always in pain. My own daughters are having different problems.

One has the classic, quite severe lower spine pain at night (age 46) which

requires pain relief, another has some spine pain, but not as bad, (age 50) and

another daughter has back pain while sleeping/bending with house chores,

overdoing, etc. (age 38). All at varying degrees.

I'm the only one that has been on anti-TNF, and I agree, it is a wonder drug

for this disease. I have had to go off it, but I'm thinking of going back on

it in the Spring. The last week has been very hard for me. I can no longer

take NSAID and only take pain meds, which do not touch high pain levels

anymore. Flexeril doesn't cut it either anymore. Florida is bad for real swings

in

barometer readings. Cold front for two days and warm front the next. Patterns

every week. Jumps 40-50 points from one day to another. It really stinks.

I'd rather be in cold weather for two weeks.....without these swings in

barometer. I do much better in NC weather during the winter months. Same for the

summer months. In NC the barometer remains pretty even.

Best regards, Connie (granny)

[Guest guest]

Hey Bill,

I am in the same " athletic " boat as you. Very active before the disease. I

do not know about any fusing of joints yet...but have LOTS of pain if I don't

take Enbrel every week. I was almost bed-ridden last year...then started Enbrel

50mg prefilled syringes (at home) 8 months ago. Within 1 month I was back on my

mountain bike. Without a doubt...biking has been my life-saver for rebuilding

muscle. I'm 35. NOTHING helps as much as the bike (mountain biking). For the

2 days after a ride...I feel like a regular human. I just got back from

Colorado yesterday and managed to go snowboarding at Keystone from 9am till 2pm

HARD! Just wore nice knee braces (mountain biking too) and took it easy while

having a blast. No jumps or half-pipes...but tore up the hill sloloming (sp?).

I heavily recommend Enbrel and biking. I do not do too well on long

walks...but the bike is my savior. I also have been using the rowing machine at

the gym to get warmed up (all of the joints and muscles are used on it) for 10

to 15 minutes before anything else. That has worked well. Let me know what you

think.

Rob in Houston (Reiter's syndrome ReA) 2 years

[Guest guest]

Bill, I have to agree with Connie aka Granny of 9. I went into a tailspin after

the full diagnosis of AS was made. The fist attack was more than likely in the

early 70's and I was all over the world at times so to pinpoint one causative

event. During that year I was on a realy pity party for myself. I decided to

go back to school to try and retrain myself. Heck I really did not know what I

would be able to do. Disaster struck our family shortly after and that problem

was my focus so I tended to forget my pain for a bit.

Sitting in my office at the local college, I decided to switch from Business

Admin to Visual Communications as I was a pro photographer and had dabbled in

photography since my first camera I received on my 13th birthday. Getting out

of the stuffy business courses was the answer, Art was more my thing and more

where hidden talents lay. Anyway, we had just purchased a mascot costume and

the guy who was supposed to wear it got sick and dropped out. I got into Jake

The Snake and never looked back again. I went to " mascot " school with Harvey

the Hound, the Calgary Flames Mascot and ended up animating 4 characters

regularly and others for special events. I did that for 12 years and my heart

put an end to that.

I had a special exercise program developed for me that took my AS into

consideration. It helped me increase my upper body strength. My SI joints are

fused along with most of my lumbar spine. But, that did not end the pain as I

have some of the growth impinging on both sciatic nerves with the left being

worse than the right. I did take part in a study using Pamidronate in pulse

infusions. By pulse I mean that the protocol required infusion for about 5

hours every day for 7 days then every other day, then gradually lower for the

rest of the study. While it worked for some, it did not work for me. I

actually got bored as I had to drive into the hospital for each infusion.

Pamidronate is an approved drug for bone cancer and osteoporosis so it was

readily available so not covered by any grants or studies. It was covered

through our drug plan at the time but 20 percent co pay of 300 dollars per

infusion still hurt like h-e-double matchsticks. If the nurse let any of the

drug go outside the vein it was painful as it is corrosive.

I do not know how the rest of the study went as my Internarheumy pulled me out

of it. My Primary Physician put me on OxyContin about three years ago now and

it pretty well does the job and Ibuprofen for breakthrough pain works well. I

was originally prescribed 20 mgm twice daily but it required 20 mgm 3 times

daily to cut the pain to a dull roar. I have not increased that dose over the

last three years and pray I do not have to. After my last visit he left it up

to me to increase the dose by one tablet if needed. There are some days that I

do need the extra tablet though as this area of Alberta is just as prone to wild

pressure changes as Florida. This year is positively wacky, record temperatures

and very little snow.

Blessings

+Dave

who is now sneaking up to his 65th birthday

[Guest guest]

Hi Connie.

Thanks for your reply. That is something having so many in the family with

AS. I do not know of any in my family and relations that has this, or even

appear to have it.

I am 57 which seems to be late in age to get it. I am greatful that I got

later in life. I am just trying to get a feel for how people have done over

time and if I could still hold onto the hope that maybe there is a chance I

might be somewhat active again. Your reply helps me get some glimpse of what I

can expect.

I do have other pain problems from injuries (neck and shoulder) which doctors

suggest that I have surgery on. So far injections and massage have been keeping

things in check for the most part. I am just trying to deal with one thing at a

time.

Your in Florida. I live in Minnesota. This winter is mild so far which is

o.k. with me. I have not notice the effect it has on my joints.

I hope you will get relief soon for your pain.

Bill

Grannyof9@... wrote:

Bill, it is hard to adjust to not being able to do what you've done in the

past. I have quite a few memb...

[Guest guest]

Hi Rob,

It is good to see you moving around as you do and still working through your

pain. It is hard to see people like yourself who are young and have this kind

of pain. As I have mentioned earlier in a post I am 57 and am greatful that I

got it later in life. One of the things I have trouble is knowing how far I

should push myself.

I started on Remicade back last May which has given me new life by reducing

the pain a lot. I had to rely on my wife to even help me out of bed and into

the the shower. It was like my hip was broken for several months until they

figured it all out.

Because of other injuries to my neck, I had to sell my nice road bike and

revert to a recumbent. That has worked well for me because it took the

pressure off of my neck. (like riding a lounge chair) However, I haven't been

able to ride for the last couple of years. I did try a couple of times last

summer but each time I hurt big time for several days. Another problem is I

would go so far and immediately my body would shut down on me and I am totaly

fatigued. Thankfully My wife was with and able to get me home. I do miss

getting an aerobic workout. I do have some equipment that gives me some pilates

type workout. This I can choose the amount of resistances and I can stretch and

flex as much as I dare. It is hard to get ther heart rate up as much as I like

though.

I will keep on trying, Rob. Your are a good inspiration.

Bill

Rob Warren <houstonwarren2@...> wrote:

Hey Bill,

I am in the same " athletic " boat as you.

---------------------------------

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[Guest guest]

Bill wrote:

It is hard to get ther heart rate up as much as I like though.

Looking at my utility bill does that automatically.

+Dave

Thankful for the mild winter so far.

[Guest guest]

Hi Dave,

Over the past few months since I discovered this wonderful site, I have read

several posts by you , Granny and others who have been real troupers for what

you are all going through. Somehow you just keep on going on one day to the

next. I have been in pain since '97 with my neck and then with my hip, and then

with my shoulder and then with my sacroiliac area and lumbar area. Seems like

new pain areas every year.

I have more good days than bad now, but there have been days when more than

one area is triggering off. Sometimes lasting several days it become so

overwhelming. I have never contemplated suicide and I believe it is totally

wrong but I have prayed that one day I may just not wake up if this pain doesn't

get better. I remember one day complaining bitterly to a physical therapist

that if I can't use my leg they should just cut it off. When I left the

hospital, I notice someone hopping wildly in the parking lot accross the way and

saw this was a very young girl hopping to her car with only one leg. I remember

praying to God to forgive me for complaining and thanking Him that I still have

both legs, in pain but still working.

I am in engineering and perhaps this is why I am always trying to analyze

things. I am ever so slowly adjusting but still find it very difficult. I just

have no idea what to expect at this point. Your replies help. It looks like

through your reply you kept on adjusting as time changes. It looks like you

have had to make several adjustments.

Thanks for your reply, Dave.

Bill

Web Friar <webfriar@...> wrote:

Bill, I have to agree with Connie aka Granny of 9. I went into a tailspin

after the full diagnosis of AS was made.

---------------------------------

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DSL Something to write home about. Just $16.99/mo. or less

[Guest guest]

Thanks for your kind words Bill they are very much appreciated. At the

beginning of this lists history we wondered if we would get past a handful of

members, then it started growing and we prayed that the list would grow to 30 -

35 members. When we hit that plateau we kept on praying and the list has grown

exponentionaly for which we are more than thankful for.

The more folks that visit RISG.ORG the better, and especially folks like Ana and

in Israel, Connie (Granny), Mike and Priscilla, Mike Zehr, and folks from

many other countries. It has enabled us to see just how far this wonky gene

goes around the world. There is actually a Canadian West Coast Indian Tribe

that has a high rate of AS and Reiter's which goes against the white person of

European decscent theory.

What do we know, in the beginning, there was a Pharoe in Egypt with AS roughly

around the Exodus time. This gives credence to the theory that civilization

moved out of Africa and the Fertile Crescent eventually populating the world

from both East and Western routes. We know for facts that the Eskimos in

Northern Canada and Alaska, are of the same genetic group as the Inuit (Proper

name for eskimoes) in northern regions of Europe, Russia, Mongolia, and more

northern areas. They also speak dialects of the same language Inuktituk and can

converse with their counterparts world wide through the Internet.

When we look at the culture of the Coast Native in Canada they are of a

different race than came from the Eastern route. Unfortunately a very

interesting First Nations members in Newfoundland, The Beothuk's, who were

slaughter with only one woman living to die of old age. That genetic property

is lost no forever because the British, French and others that came to trade

decided the Beothuks were savages and needed to be eliminated even putting

bounties on the heads. The British element did not want bodies being dragged in

to town to collect the bounty so " THE BRITISH AND FRENCH TAUGHT THE NATIVE

AMERICANS HOW TO SCALP THEIR FOE THE WHITE EYES. " Scalping was not native to

the natives.

However I ramble too much. The West Coast native groups resemble the Southern

Pacific First Nations more than their Canadian First Nations. You can see that

their facial features and customs come more from the South Pacific than

Atlantic.

I would also love to find out why AS skipped a generation in my family so with

both parents deceased leaves us looking for other members of the family that

were the generation before the skip. As is know for doing that. I think one

day I will put up a search for relative site using the HLA-B-27 Maker but also

asking others as I find them with back problems or story's of vicious back pains

or other pains that went undiagnosed. So will have to really go back in

history.

Not making much headway as the original name was misspelled more times than

's has Liver Pills. Much the same happened to many other immigrants with

differing names.

+Dave

[Guest guest]

Hi ,

I hope you don't mind me commenting.

My quick history over 30 or 40 years (they said maybe even 12 years old) of

Seno-negative Rheumtoid Arthritis, A.S. Fibromyalgia etc. I am now 54 years.

Yes it is very hard coping with continual pain and discomfort, weakness in

joints. I am like you I take it day by day. Two years old I lost feeling in

both arms, from the tip of my fingers up to the elbow from a severe flareup,

it took six weeks for the feelings to come back, (I had to wear braces up to

the elbow, and continue to wear them after that at night to protect them

when sleeping. I still have weakness in them but the feelings came back.

If they swell again I put the braces on to support them. We have to look

for the wins, the battle is very hard, we go up and down, surely if the

inflamatory is very high it must effect how our brain cope with the

overwheming time, it would be very stretch with some much going on.

This site is a home to very caring people, sharing useful methods etc, or

just a listening ear.

Pain gradually weakness our coping skills. Because of my long history of

disabilities, pain, and flareups I have had to use many many methods to

survive. Hospital stays and Rehab. high levels of pain relief, meditation,

relaxing tapes.

I have had some relief from pain for the last 18 months with Methotrexate

injections at a high dose of 25 mg. This was mainly for the dangerous

inflamatory levels, but it seems to have lower the pain threshold for me.

The effect of my illness affected my whole body. I go to a Chiro, quite

often, which gives me some relief also.

I afraid A.S. especially changes and advances through your body leaving its

mark, we are all often affected differently. My AS seems to affect my

organs too, heart problems, bowel (IBS) Crohns Disease, the brain with

migraines.

Yes we hope for more good days then bad, but that does not always happen.

The overwhelming feelings are because you are now not pain relief enough.

Surely at these times the G.P. or Rheumy can give higher medication for

pain.

I don't take pain killers all the time, I leave them for the really bad

times, but if I need pain relief I take it.

You said:

I have more good days than bad now, but there have been days when more than

one area is triggering off. Sometimes lasting several days it become so

overwhelming. I have never contemplated suicide and I believe it is totally

wrong but I have prayed that one day I may just not wake up if this pain

doesn't get better. I remember one day complaining bitterly to a physical

therapist that if I can't use my leg they should just cut it off. When I

left the hospital, I notice someone hopping wildly in the parking lot

accross the way and saw this was a very young girl hopping to her car with

only one leg. I remember praying to God to forgive me for complaining and

thanking Him that I still have both legs, in pain but still working.

Yes I would agree I have had thoughts of the release of the pain, going in

my sleep, but you wake up and another day starts, and you just get through

it. We are entitled to complain sometimes, we are in deep deep pain, you

have to let off steam all you would burst.

Yes when I am feeling sorry for myself, some picture of a child with

disabilities would come on the T.V. and would remind me that at least when a

child I was in remission most of the time, they suffer in the young years.

You said: I am in engineering and perhaps this is why I am always trying

to analyze things.

Yes was a person also that analyze everying, organize everything, lived a

very structual live, but constant illness changes the patterns and you have

to go with the flow.

You said: I am ever so slowly adjusting but still find it very difficult. I

just have no idea what to expect at this point. Your replies help. It

looks like through your reply you kept on adjusting as time changes. It

looks like you have had to make several adjustments.

It takes time to adjust, weeks in quite a few ReHabs. (also counselling

sessions - which they recommend to all their clients) helped me to adjust,

to learn ways to save energy, to learn to relax with relaxing tapes, yoga

deepbreathing exercises etc. and accept my fate was not going to change I

had to learn to adjust, wasting energy wishing it would change, was not an

option.

Bye Lyn (Australia)

[Guest guest]

I really enjoyed your genetic info, +Dave. I, too, am fascinated by Physical

Anthropology and would love to go back and study it someday. Do you have

favorite resources you would recommend? I am curious, what was the tribe on

northwest coast with the high incidence of B27?

One day I had an Aztec and a Tahitian student in my center and they looked so

much like brothers we were shocked to discover they were not. It was a

treat....both happened to be delightful students, as well, and they hit it off.

As part Iroquois myself (1/16th), who would be north east, I am so curious what

the incidence is for them.

Also, I wonder....is the incidence higher in the U.K.? If so would it be higher

with those of Celtic or English descent?

Kay, I am so sorry for your back pain and confusion with the MD's. It is so hard

to sort through these difficult decisions with MDs who don't know about our

diseases and who may have conflicting opinions...and all of this when you are in

pain. You have my sympathy. To me it sounds like you have many more questions

for your MDs before you make a final decision on surgery. I wish you luck and

keep us posted.

I am in education too. I am hoping I do not need to retire early as I really

like my work. As those of us in the field know, with seniority my salary is

finally decent, and I'd hate to slow down now. As it is I have given up my

overtime class and I am so sad because it was my favorite class...Psych. of

Women. Interesting that years ago I " inherited " the class from a co-worker who

had fibromyalgia...small world of spondys.

I may have mentioned that I have found relief from my urethritis by taking a

herb called cat's claw. I used to drink cranberry juice back when I thought I

was having bacterial infections but I discovered the juice actually made me

worse. I think the juice and the herb affect the PH levels in opposite ways.

I am on a break between semesters so I am able to budget my limited reading and

computer time (eye strain) to catch up with you all and some personal

reading...what bliss!

Love,

in CA

What do we know, in the beginning, there was a Pharoe in Egypt with AS....

[Guest guest]

Hi Lyn,

Yes, I welcome your comments and thank you for sharing. You have had quite

a history of challenges! I am also encouraged by how you have worked through

all this through all these years.

I too am so grateful I came ac cross this site. When I first started reading

some of these posts, I thought to myself " finally, people who understand what I

am going through " . I know there are so many like yourself who have been

dealing with this for a long time.

I am also happy to hear the good results from that traveling camera. Ha,

my intestines are so long and twisted up that I am afraid if they sent a camera

down there they may need a GAPS system to help it find its way out.

Bill

Mahar <lindamahar@...> wrote:

Hi ,

I hope you don't mind me commenting.

---------------------------------

Photos – Showcase holiday pictures in hardcover

Photo Books. You design it and we’ll bind it!