Re:confused about all the pain

[Guest guest]

Dear ,

Like you, I’ve never met anyone or heard of anyone who is totally cured

after developing PA. I know one person who so far has only been affected in

her thumb and to me she is really incredibly lucky, compared to most of the

other people I know. It does seem like the longer you have had this disease

or the longer it took the doctors to make the correct diagnosis, and the

longer it takes for you to find a drug that you can take the side effects

and it actually still helps you, the worst the pain can become. It only

makes sense if you have more joint damage you will have more pain, over

someone who doesn’t have the damage. Also the longer you allow the pain to

go on, the worst the pain actually gets. You develop pathways to the brain

so the pain actually gets there quicker and it gets stronger all the time.

This is definitely one disease where you don’t want to suffer in silence

thinking you can tough it out or you can end up with pain so severe life isn

’t worth living anymore.

I know this has been brought up before, but have you looked into pain

management? It literally saved my life when I first went into see them. I

had just had jaw surgery for what everyone told me was TMJ. It turns out it

was just the beginning of PA and it took about 3 years before I even got the

correct diagnosis. Then it also took about 2 years before I found a

medication my body could tolerate and one that actually seemed to help me.

I think I have tried them all, but I happen to be allergic to a lot of

injectable drugs and just medication in general. For me, Arava was my magic

pill for at least 3 years. It has been wearing off in the past 3 years and

I’ve noticed my pain and joint destruction has gotten worse each month. We

have changed my pain medication around several times and my doctor has told

me I still have a lot of options to try. I think when they tell me I’ve run

out of medication to try or that nothing else can be done, it might be the

end of me.

Don’t get me wrong...I’ve been told already that it is a progressive

disease, which in my case is poorly controlled, and is causing maximum joint

and tendon damage. So I can read the writing on the wall, as far as how

rewarding my future years look to me. I still try to stay positive and find

joy in each day, even if just taking a shower that day is all I accomplish.

It hasn’t been easy since before all this hit, I already had fibromyalgia

and severe asthma. Now I’m not even going to list all that is wrong with

me, and my doctors have all told me it’s due to my immune system

disfunctioning.

I guess what I’m saying is if you have to wait a long time to see a

rheumatologist, then I would be looking into pain management doctors or

centers now. They aren’t always an easy answer, but for me they have worked

miracles for me over the years. A lot of things I tried weren’t even

medication related. Like all doctors, you can figure out pretty quickly

which ones are in practice for the money or who actually do want to help you

and relieve your pain. Your only other option if you don’t have a family

doctor that will help you until you get an appointment is the ER. They can

help stop your pain at least for a day or two and give your body a break

when it’s really bad. You just can’t go there every week or they will

consider you a drug seeker. If you have X-rays to back up any of the joint

damage it helps with all doctors who are willing to prescribe pain meds. I’

ve never met a rheumatologist yet who was willing to just hand out pain meds

on a regular basis. It also took me 7 rheumatologists before I found one

who knew exactly what was wrong with me, so do as much research a head of

time on your doctors, disease and pain problems before you go to see the

doctor. I know it helps me to at least sound like I understand my disease

and my symptoms to some degree and a good doctor is never threatened by an

informed patient. .

Other than that, all I can recommend is Pain Buster 2, which is an arthritis

cream you can buy at Walgreen’s. It helps me a lot when the muscle pain is

really bad and I need some immediate relief. Good luck and I hate to think

of anyone in pain without any help. Don’t be afraid to ask for help, even

if it’s at the ER. They might be able to help you get into a doctor sooner

or a pain center. Take care and I hope your pain ends or at least gets

better soon.

Sincerely, Fran