RE: Hello everone

[Guest guest]

Hi ,

I think that many of us can sympathesize with how

you're feeling. Be assured, you're not alone.

Unfortunatley, pain cannot be seen and is difficult to

measure. I often don't exhibit joint swelling, but the

pain is very real to me, as it is to you.

When I'm home in the evenings and on weekends, my ice

bag and heating pad are constant companions. I

alternate the ice and heat where I'm hurting (back,

neck, jaw, feet or hands) and it helps to take the

edge off. I've been taking tramadol for almost 3 years

now and it's losing its effectiveness, so I do what I

can physically to make myself more comfortable. I also

soak in our hot tub atleast once a day, and with the

weather being so cold and snowy right now, the feeling

of being warm to my bones is a great temporary relief

for me.

Just some ideas to try if you haven't yet

warm blessings,

jane

--- wend <wend_1966@...> wrote:

> Hello everyone,

> I was diagnosed with PA in January and since then

> the pain that I am

> in is getting worse.

__________________________________________________

[Guest guest]

> I was just wondering if anyone else has the severe

> pain with little swelling? Because I feel as if Im all alone. Thank

> you.

>

>

Hello , I am sorry you hurt. Does the morphene keep it to a

dull roar?

Most of my pain over the years has resulted with/from little swelling

(though I think the swelling with my spine has been difficult to

assess). I don't know if it has been because of my dogged athletic

determination to work through the pain or not. I don't seem to have

the energy or the will to do that anymore. Besides, it now seems to

be harmful for me to push myself beyond certain points - effects of

aging creeping in, I presume. I will say that I have had increased

swelling in the last few years. I seem to be getting two of those

pencil in a cup finger joints, but they don't hurt nearly as much as

my other digits. Best Wishes...Brent

[Guest guest]

Hi:)

I see that you have been taking tramadol for 3 years... has the doctor said

that was ok? I'm just wondering because on the leaflet from the pharmacy it

said for short term use only. I got nervous because I was using it for the

last few months myself until I ran out. I tried OTC, with no relief, so I

asked my rheum for something to help me get thru my busy days and he

prescribed me Vicodin 3times a day. I just started that on Monday.

The problem is that I have used all these types of meds off and on thru the

last 12 years because of 4 c-sections(used percoset), LOTS of oral surgery

(Vicodin or Tylenol #3), and then the last few months living on Tramadol ,

now Vicodin again.

I have found that although I have not used any of these meds long term

(except lately since being dx with PA)..that none of them work for me like

they do for other people. All they do is take the " edge " off the pain so I

can function better. I am never pain free, and almost never even get sleepy

or dizzy like other people.

Is this usually what happens to most people? Is there any pain meds that

will continue to work long term without our bodies " getting used " to them?

Also, is it safe to be taking Vicodin for several months at a time? I am

hoping not to need it that long , I just started Enbrel and am looking

forward to hopping out of bed in the mornings!

Blessings,

Lorraine

Prov.31:30 <><

" Charm is deceitful and beauty is passing,but a woman who fears the Lord, she

shall be praised. "

[Guest guest]

Dear Lorriane,

Unfortunately, most of the narcotics do cause our bodies to get " used to

them " . I've found the best thing for me has been a time released form of

morphine. I know that sounds like a big hitter, and it is, but in the

time-released form, you don't get the ups and downs that come with other

drugs, like vicoden. I was on that too for a while, but my pain specialist

said it's great for short-term pain, but not for someone with chronic pain,

though I know a lot of people do use it for chronic pain.

I know I sound like a broken record at times, but for me the answer was a

pain specialist. Very few family doctors or rheumatologists are going to

prescribe morphine on a continuing basis. Yet if you see a specialist in

pain management, most of them do use the time-released drugs since they don'

t have the same side effects other drugs do. It took a long time to get my

level at the right amount so the pain was tolerable. At least I had someone

who was willing to work with me, and didn't think I needed to " tough it out "

.. Since then I've have tried other drugs that are supposed to reduce pain,

and nothing really worked besides the morphine. Until now. About 2 months

ago, I started on Lyrica, and it has cut my pain medication almost in half.

I hardly ever take my break though pain medication now, and for the first

time in years I have forgotten to take my regular pain meds several times

when they are due. I used to watch the clock in order to know when I could

take my 2nd dose, but now I just don't think about it at all.

It took about 6 weeks for Lyrica to work for me, and I've found I can only

tolerate 50mg at night since it makes me sleepy. It's been a real wonder

drug for me. It hasn't stopped my PA, or slowed down the joint problems,

but it has reduced my pain and increased my energy. You might want to ask

your family doctor about it since they can't complain about prescribing it,

since it's not an addictive drug. I know I've think pain management is the

answer because it worked so well for me, but it makes sense to me to see a

specialist to treat your pain, just like you would any other problem. So

many doctors don't have a clue about pain and how it has to be stopped so

you can lead a normal life. It's important to check out the doctors in your

area and keep looking until you find one you like. No one should have to

suffer in pain anymore, with all the new drugs and treatments that are

available. I'm also currently going for IV treatment every week for 6

weeks. The IV's are only full of vitamins and minerals. These have also

increases my energy levels and made life much easier for me. The point is

there are other options besides just drugs when you see a specialist who

knows what they are doing.

Good luck, Lorriane. I hope you can find someone to help you. You deserve

it. Write me anytime you want. fran@... <mailto:fran@...>

Take care and have a wonderful holiday. Love, Fran

Hi:)

I see that you have been taking tramadol for 3 years... has the doctor said

that was ok? I'm just wondering because on the leaflet from the pharmacy it

said for short term use only. I got nervous because I was using it for the

last few months myself until I ran out. I tried OTC, with no relief, so I

asked my rheum for something to help me get thru my busy days and he

prescribed me Vicodin 3times a day. I just started that on Monday.

The problem is that I have used all these types of meds off and on thru the

last 12 years because of 4 c-sections(used percoset), LOTS of oral surgery

(Vicodin or Tylenol #3), and then the last few months living on Tramadol ,

now Vicodin again.

I have found that although I have not used any of these meds long term

(except lately since being dx with PA)..that none of them work for me like

they do for other people. All they do is take the " edge " off the pain so I

can function better. I am never pain free, and almost never even get sleepy

or dizzy like other people.

Is this usually what happens to most people? Is there any pain meds that

will continue to work long term without our bodies " getting used " to them?

Also, is it safe to be taking Vicodin for several months at a time? I am

hoping not to need it that long , I just started Enbrel and am looking

forward to hopping out of bed in the mornings!

Blessings,

Lorraine

_____

[Guest guest]

Hi ...welcome to the group. I read and lurk almost everyday as

it brings me great comfort to be in touch with others going through

the same. I hope it does the same for you.

You're not alone. I have had virtually no swelling in any of my

joints. One time about 4 years ago, the big toe on my right foot got

swollen and red, but didn't have much pain, not enough to go to the

doctor. And at that time I had not been diagnosed with PA. Got that

news April 14 of this year, after 15 long years of seeking answers to

my vague aches and pains.

I did a lot of research when I received my dx and found several

places I searched on the web that indicated, while it may not be the

norm, it isn't at all uncommon for people with PA to joints affected

but not have the pain or swelling typically associated with an

arthritic condition.

In my case x-rays show my finger joints are damaged, but I've never

had the typical saugage like swelling there. The only way I know when

the disease is active in my fingers is when I feel the need to pop

them. It can be just one time or continue for several days to months

in a row. In fact they have been bothering me for the last several

weeks, ever since it got cold. They're a little achey and a little

stiff, but it's never prevented me from using them. But it does

affect my strength and coordination.

You mentioned muscle aches too. That is mostly what I experience and

I think that is why I could not get diagnosed for so long. My muscles

ache. Oh! Do they ache. And it's not just one mucscle. It is litterly

every muscle in my body as the arthritis affects my fingers, toes,

hips, shoulders, neck, back, and SI joints.

I'm on 20mg MTX a week and skelaxin 800mg, a muscle relaxer, 4 times

a day. This has been a miracle combo for me. While I'm not in

remission, I'm tons betters. Much more active, if you can call it

that, and have much more stamina, but more importantly much more

comfortable.

I hope what I've shared with you brings some comfort as I know how it

feels when you question yourself about what your experiencing. Don't!

While you may not find the symptoms you have on the official list of

PA symptoms, but a large number of us have them.

Michele

Dallas