Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Getting Help??!!??!

Oh Ronna I feel your pain. I also had a doctor treat me that way... Saying , "there is not much more I can do for you!" I can tell you many things to do that will help if you are interested. There is soo much more that can be done. On the ribcage issue: Start blowing up balloons everyday. I blow up one about 10 times a day as a form of physical therapy and it has helped. If naproxen (alieve) works, take it religiously. That will slow the fusion going on. If it stops working, which does happen. Then by all means request something better. Look in the pharmacy section of the forum. I use Vioxx and it has really done alot to help. But I am looking into enbrel and remicaid as an alternative since they are showing better results for A.S. . Some other good first time medications to try are: diclofenac (voltarin), Clinoril, Orudius, idomethacin. But don't let your rheumy tell you that is all you really need. You will also find relief from maild pain pills such as Darvocett, Loratab, percocet, and tylenol 3 with codiene. But if he won't perscribe any of them then he should at least giove you a good muscle relaxer such as: Flexaril, Soma, skelix (can't spell it). But if they give you Methocarbomal you will find it is really a joke. Also stay away from the following muscle relaxers cause they do things to you that are not worth their relaxing effects: Valium and Elavil. These two are more used as anti-psychotics,and if you aren't physciotic they make you that way. I was put on Elavil 100mg 4 times a day, and I started seeing crap, plus I spent many hours in bed because I was too woosey to move. I actually lost 3 months of my life to that d$#@ drug.

As far as helpers you may find the following things helpful in your life with A.S.:
1. A reacher ( a metal claw on a stick for picking up things)
2. A Sock Aide (device for helping put socks on)
3. A dressing Stick (helps grab pants to pull the up)
4. A long shoe horn ( to help putting on shoes.)
5. Elastic shoe strings (helps putting on shoes that you keep tied)
6. Elevated toilet seat with support bars to help ease your way onto the porcelean throne and back off again.
7. A rotating cushion to help you get in and out of a car.
8. Blind spot mirrors for the out side of your vehicle.
9. A fish eye or concave (i think.. might be convex) rear view mirror attachment. (found at most boating stores.)
10. A good Cane (stay away from the 4 point ones.. You may even look into the forearm canes (crutches).

Most of this stuff can be gotten at OUCH.com

There is so much more.. If I remember some thing that might be helpful I will post again.


Somedays it just doesn't pay to get out of bed.

Just one more thought:

Inflamation causes fusion. If you stop the inflamation you stop the fusion. Get a good Nsaid and stay on it. Take pepcid or something similar to help with the tummy problems. It is imperative to stop the inflamation now before the damage gets worse. I hate to say this, but try to get on Methotrexate and/ or Suflasalizine. And beware if you start running to the restroom for diareah. If that happens regularly then you need to see a colon doctor and get tested for ulcerative colitis. Especially if you see unexplained blood when you go poo. Sorry I know that is gross, but ulcerative colitis is also very painful and very serious. It is common for patients with A.S. to also come down with U.C. as well.



Somedays it just doesn't pay to get out of bed.

Could someone tells me how a sock aide works?
It's not for me, but my husband's aunt.
She quit smoking and gained so much weight that she says she can't put on her socks anymore.
It looks like they pull the socks up and onto the foot with strings,
but how do you get the strings off once you've gotten the socks on?





Susie

Susie,
The rope is attached to a piece of plastic that you put the sock on. The plastic is like: |_| and your foot goes in it. Then you pull up on the ropes until the sock comes off the device. The device is then hanging under your leg via the ropes. Simply lifting the leg and pulling it out from under your leg is all you have to do. The ouch.com place has a picture of the sock aide under their Hip Kits. It is blue with blue ropes. Hope this helps. Gave me a though to be able to explain how they work. There are a miracle for me.


Somedays it just doesn't pay to get out of bed.

When I was first diagnosed (at 13), this is what I knew of AS: My back hurt, it was never going to go away, it was going to stick together so I could not move, and then I would be in a wheelchair. Doctors should really explain these things!!!!!!

Keep coming here... It will help

********
Kristin

TODAY IS NOT A DRESS REHEARSAL!!

Dear Ronna:

Some of us actually once believed that NSAIDs, since they have the ability to reduce the pain and this could be indicative of some lowered level of inflammation, would help us avoid long-term damage. That was then. Now, however, I am all too aware that I was damaged by NSAIDs and many of our group now recognizes they were, also. Nothing accelerated the progression of my condition more than these drugs. I shall never tire of reiterating this fact.

If we take drugs that help us ignore pain, without regards to the source of the pain, we will certainly face severe consequences, long-term. This is tantamount to driving your car with the annoying check engine indicator light taped over or disconnected. It is anybody's guess what will go wrong, but mechanics (or doctors) will love you.

The only drugs that are even like anything our bodies would produce are steroids and in taking these, we apparently stop making them on our own. The cause of arthritis is not a deficiency of aspirin, or any other drug. Drugs can be very useful, but the easy fix should be exposed as a temporary measure. Now I have used two of Dr. Joel Wallach's examples, so I want to give him credit.

Drugs that knock out our immune systems, like methotrexate, could actually allow much more extensive bacterial colonies to establish without challenge, and it is believed by people who have actually successfully treated AS that it is caused by a bacterium.

You will find plenty of caring and well-intentioned people on this side of kickas. This is the support section that we each want to help one another within. If even the doctors are still getting it wrong, we cannot expect very much more of the patients.

I do have an agenda and some bias against most drugs, but I have met a long-term ex-sufferer and have now become one myself--after proving that drugs and most doctors could not achieve this. Part of my agenda is to encourage others to not re-invent that particular wheel.

Best Regards,
John

Hi, Ronna,

And Welcome to KickAS!!! THis is the place for information, fun, friendship, and venting. It's a long road to finding what will help/not help you. We are all different, so most of it is eenie, meanie, minie, moe.

I tried various NSAID's and was allergic to all of them. Sulfasalazine and MTX were the same. I thought my number was up on the MTX. My rheumy told me not to bother coming back as there was nothing more he could do. So I went home, had a good cry, and continued to get worse. By a miracle, I landed in an Enbrel study, and I just started living again.

I'm still looking for a doctor, and I do know I'll need to find another rheumy. It sounds like you need another doctor, too. My rheumy said my rib, knee, and elbow pain were something else, and he didn't want to hear about it. The second rheumy I saw wasn't much better, but did acknowledge that I was in pain. My GP knows that AS is a disease that affects only the spine, so doesn't believe that the other pain exists, and that women only have mild AS with little pain. If that's what you have for a doctor, it's time to find another, as he will never help you.

Welcome again, and I look forward to getting to know you better.

Hugs,

Cindy

Hi Ronna,
There are better experienced people on the site to answer your questions, I don't have AS so can't relate to what you go through, my husband has the AS.

Just wanted to say welcome!!

Take care
Jackie

HoPpY EaStEr....

Hi Ronna,

Welcome to the site! I hope you find something that helps you with your pain and someone (doc) who is willing to work with you. I have tried many NSAIDS nad only found relief with indocin, I also take ultram for pain, which is a very strong non-narcotic drug so you don't have to worry about addiction and the stigma docs put on narcotic meds, but if it doesn't work for you, definatly use narcotics if you need to. I have a big bottle of vicoden as back up pain relievers in case my pain is too bad where I would need to go into the ER. Some kind of muscle relaxer might help you with your sleep, like flexoril or soma. I'm impressed that you have been keeping up on your exercises through the pain for so long. Keep up the good work, and it should become eaiser to do them when you get some relief from your pain.

Also, you are allways allowed, and even encouraged, to vent as much as you want to. Everyone with AS needs to vent at least every now and then, if not daily.

If you ever want to vent, ask a question, or just talk to me, feel free to PM me anytime.

Take care my friend

Daniel

Keep on keepin on Kicking some AS

Welcome to KickAs. I have only recently been coming to this site and I have found it very useful. It was a year and a half ago when I found out that I have AS. I have a hard time dealing with the pain sometimes but I try and stay positive. I am not as experienced as some others who will reply so I do not have much advice. Vioxx seems to help with the pain. Welsome to this great group.

Darren