Rheumatoid Arthritis Support Group

i am frustrated that i pay my drs. so much money and i get little for that in return. i have been in such pain for the last week and when i called my drs. both pcp rhuemy i got no call from one and the other called and i told them what was going on and the nurse said i will talk to dr and call back which she did not do. i am at a point where i just want to chuck the whole medical system and give up. i understand that pain is part of this disease but is is necessary for me to be in pain like this can i not get something for it.i realize that it takes up to six months for the orencia shots to work fully but after 3 should their not be a way we can say maby this is not working lets move on. and why i am paying good money to be in pain all the time and feel awful all the time

You are right. They are wrong. So wrong. No excuse to let a patient be in so much pain, when there so many ways out there to treat pain and take it to manageable levels. Drs have a lot of concerns with so many patients, sodo their teams, so it does not necessarily mean they are bad professionals, but they just have to get back to you, fast, when you need them promptly.

It is a bad feeling to need someone, so much, and not get their help. It is a cruel irony that, when you are the weakest out of pain, you have to be so on your toes to get what you need.

Keep calling. And calling. And calling. Whine. A lot. Say you can't take the pain anymore. If you can, cry. Don't downplay your suffering. The nurse will get it, that something needs to be done, and get the dr to call

I totally agree. I started the Remicade infusions in October and I felt so much better after a month. Now it's February and I feel great. You know your body and when something isn't right. If you are not happy with either one then I would switch. I know that is hard to do but you don't HAVE to be in pain constantly!! Stick up for you and your body! I will keep you in prayer.

Unacceptable.

When a person is fighting RA one of the main symptoms is the pain.

Until RA is in controlled or in remission, the pain is part of the package.

While one is striving for control/remission all the symptoms must be dealt with. Symtoms: PAIN, INFLAMATION, FATIGUE...

Many times, we take steroids for the inflamation even while using RA meds. Steroids are not a med that is treating RA, just the inflammation symptom.

Many of us still have to use pain meds even with controlled RA. "Controlled" does not mean remission.

In my opinion it is totally unacceptable a RA doc would not treat he pain of RA.What the h*** is wrong with this idiot? Arthritis is ravaging the body. When he body is ravaged by arthritis it is in strong pain.

H***, our very bones, tendons, muscles will become damaged and pain is the body's way of saying, "HELP!!!"

We much prefer to take OTC pain meds than prescription meds but we are far, far past the days of that working.

The pain is real. The pain is horrible. The pain is consuming. The pain goes on and on. The pain can mess with our minds as well as bodies.

It messed with my mind in a terrifying way. My rheumy was not to blame. He gave me pain meds, I chose to take far less than prescribed. And...I paid a terrible price when the uncontrolled pain affected my mind with hours of blackout periods.

I agree, with others here. A new rheumy may be something you need to think about.

It makes me so mad for a rheumotologist who is specifically trained in this area to sit back and say, "Wait."

Why?

Why would he say to wait for meds to kick in when he has to have a strong idea of the pain a body is going thru? If he doesn't then he certainly does not "know" RA.

RA is chronic not acute. We usually cannot outwait the pain.

Why?

Because the pain is not going anywhere without proper treatment. That's part of a chronic disease.

I am praying for you. My heart breaks for unnessacery suffering. Even with pain meds most of us still deal with flares and such but, we can find a decent quality of life with the control.

Gentle hugs

Hi judylacy, I am so sorry that you are suffering so much and it is very unacceptable that your doctorsnurses are not returning your calls. For some people it does take a considerable amount of time before the meds begin to help and your doctors should give you something to help manage the pain in the meantime.

I was in horrible pain for so long before and while waiting for the Enbrel to kick in, I had a long hard fight with the docs for pain medication, I was on Lortab for a year but it didn't do enough for the pain. It was horrible and I could take it no longer and I was so angry with my doctors because I too had to play phone tag and begging them to help with the pain for months before they finally gave me something stronger. They are more concerned about you "maybe" becoming addicted to them, than they do about your comfort. Its a really messed up system!!

I broke down and called crying hysterically because I couldn't take it anymore. It took that for them to finally take me seriously even though you could see how much pain I was in everyday when I went to my appointments. I agree with everyone, keep calling until they do something. You could also request a referral to a pain management specialist.

I hope you find some relief soon and your doctors help you and do their JOBS! *hugs*

Linda

Dear Judy,

I can't believe that your doctors are ignoring your pain. They agree that you have RA but don't treat the whole of you. I also think requesting a referral to a pain management specialist.

You are in my prayers for relief.

well today was horrible i have had a major allergic reaction to my shot i am miserable i itch every where and my face looks like a lobster with hives and my neck is as red i hate this called dr got a call back this time said take some benadryl i said already did and she call if it gets worse it is finally better now ugh i really dislike this disease

I am sorry to hear of the allergic reaction. I am assuming no more Orencia?

Keep a watch on it dear and please keep us posted.

Hugs

Judy,if it gets worse call 911, not your doctor. You don't want to risk it effecting your breathing, and throat swelling.

So sorry to hear you had a reaction. That's what I'm always afraid of now, since my incident having a similar reaction as yours to an OTC herb! I carry Benadryl with me at all times, and actually need to refill my EpiPen.

Hope you'll feel better quickly.

Like Karen, I keep liquid benedryl on hand along witn an epi-pen. Allergies can be dangerous.

Chuck had an allergic reaction to a OTC tea. I do not us any herbal teas bcause of seeing him react so badly.

The last thing I had a reaction to was Macrodantin (UTI). It was at least a week or two after finishing the med before the trunk of my body broke out in hives ranging in size from a penny to a small saucer. Literally covered in these hives.

I did go to ER and later to my doc. I was pumped up with steroids. And sent to an allergy specialist.

That is where I found an allergy can show up 30 days AFTER "whatever" it was can make an appearence.

As Karen said, be very careful concerning allergic reactions. Do not hesitate to call 911.

Hugs