HI there Bill!!! 

Sorry to hear you are on so much pain.  Believe me, we have all been there, are there and will be there.

There are some first things that come along with being new to RA.  Number 1 being exactly what you said, it is more pain than you have experienced before.  Why, because at the moment, your RA is not under control.

Sometimes it takes a long time for us to get our meds adjusted to meet our disease head on!!  Prednisone and Mtx are not the only meds out there for RA but they are first string.  That is not to say, you will never be pain free, but you will learn the nuances of pain.  You will learn to distinguish between good days and bad. (today was a good day, I got out of bed on the first try)

Number 2.  You say you have no insurance and are going through the hospital.  I too, use county health care.  The question is, are you seeing a rheumatologist or going into ER or seeing a general physician (GP)?  I ask these question because,  ER docs and GP's are only going to go so far to treat you.  They will refer you to a specialist, a Rheumatologist.  A rheumie may or may not give you pain meds, as it is their job to "treat the disease not the symptoms."  Most rheumies will adjust and switch your meds to get the RA under control which is not determined by your pain but by your bloodwork (in their eyes because they are not the ones in the pain).

To go from there, a rheumie will probably refer you to a pain specialist to prescribe narcotics or whatnot. Or refer you back to your GP along with more documention on the progress of your RA.

Number 3 there is a stronger hydrocodone, a  #7.5 vicodine and a #10 vicodine or Lortab. It may be that the hospital insurance does not allow for a higher script to be written (mine does not).  However, the oxycodone is a different chemical make up and stronger. so make your choices there. Not all of us take narcotic pain meds for our own reasons or because biomeds like Enbrel control the pain and swelling.

One of the nuances of being able to live with RA is coming to an understanding with your pain.  Pain meds do not always make the pain go away and can often times make it worse.  (And with strong pain meds and chronic pain, we take the risk of dependence on narcotics which actually causes "hangover" effects that are painful on top of our RA pain).

I know none of this is solace for you right now.  But I can assure you eventually you and your RA will learn to live in harmony.  And the first step to take is to calm down.  Take all of our words for it, the tension, stress and anguish we have because of our pain truly and without a doubt causes more pain.  It all snowballs into an uncontrollable mass.  When we are calm our pain is calm (lesser not gone.)  If you can get some sleep, it helps the body heal also.

Lene Anderson, one of the experts of this website always recommends reading the book The First Year with Rheumatoid Arthritis and checking our the links on this site about the basics of RA and throughout the web to come to an understanding about what exactly is going on with your body and why RA hurts so badly.   

I know nothing I said today has made the pain go away.  And words are just words when you are hurting so badly.  But the light at the end of the tunnel is that your RA will not always be as angry as it is now and neither will you.  Do the manly thing and cry if you have to.  Many of us women, cry in the shower so our family doesn't see our pain. 

Keep us informed and do not be afraid to vent to us.  That is what we are here for.

Ronie

DebbieM123

7/ 4/10 4:09pm

I agree with Ronie, Bill.

And, ER doctors will treat you like it's "not that bad" because it's not their "specialty." When I was first diagnosed years ago the pain brought me to the ER alot and they did absolutely nothing for me because they don't know the disease. They try or attempt to help the symptoms you come in for. Like the pain. But they usually will admit to you at some point that they can't help you further, after they initially give you whatever meds they'll use to try to stop the pain. They offer the muscle relaxants, they offer what they can of a narcotic, they offer benzos, sleep aids. It's not going to fix the underlying problem, and the ER doctors know that. 

The Rheumatologist at the hospital you are going to is the best bet for you. I'm sure there might be a few, or atleast I hope there are. Like Ronie said, those are the individuals that will attempt to get the Ra under control. They can order the tests whether blood, xrays, scans, mris, etc that will help them, help you. [I feel like Jerry McGuire right there haha]

 

I too demanded pain meds. And I got upset when they said that in essence if you keep on taking them, the pain will be worse over time, because as you take narcotics in the longrun the re-bound affect will occur and then you're worse off. So I'm sure the ER doctors don't really want to prescribe much of anything that is needed to take the edge off right now for you, because they are just not skilled in the area.

Many Er doctors and regular GPs will make you think your pain is all in your head. It's only because they don't understand the disease like a Rheumatologist would.

 

I do agree with trying not to get too angry. I have been there. It only exacerbates my pain. This Ra thrives off stress. The more you can eliminate it, the better you'll feel. I also do go to Chronic Pain seminars. I do alternative medicine along with western medicine. I just run it by my Rheumatologist and vice versa. I know there seems to be no light at the end of the tunnel right now, but I assure you there will be. The suggestions of Pain Management I laughed at too. But when you see the right doctor (Rheumatologist) and they can get you on a combination of meds to control the disease, the symptoms will lessen. That's when the pain management techniques will be useful. Right now, I'm sure they wouldn't because your pain is so high and so stressful. Please hang in there and keep us posted.

Bill

7/11/10 12:42am

Ok, DebbieM123.  Thank you for the help.  You can feel like Jerry McGuire, as long as you don't sound like him! 

 

I will look into other ways to manage the pain, I have no choice, hahaha!

I have tried to find people with this disease, but so far it seems to be only women, I guess I will have to get in touch with my femine side...Just kidding!

(when I feel really bad pain, I am trying humor now,  to make me laugh.  Is that strange or what having pain for a really l-o-n-g time does to one?)

 

For example, I forgot I had RA and knocked hard on a door again at a business.  The pain was excruciating, but I still laughed hard!  I got some curious looks!  Maybe it's due to the lack of sleep, I have been feeling loopy.

George

1/30/11 10:07am

Hi Bill, Well their are at least two males that have RA you and me lol. Hope you find you find a answer to relieve your pain.

Bill

7/11/10 12:14am

Hello Ronie, thanks for the help.  I have seen a Rheumatologist twice.

He refered me to the Primary Care (regular doctor) for pain. As you said, he does not and will not prescribe pain medicine.  They haven't told me that there is a pain specialist, I will ask about that.  They will not prescribe any more Oxycodone, because they say it isn't working.

 

I don't want to complain, sorry.  I still don't understand all this and was surprised when I found out some of the doctor(s) didn't seem to either.  One still acts like I am talking nonsense about the pain.  I have given up trying find a way to stop the pain, the doctor(s) wear you out, pretending they are going to do something, when they really have no idea?

 

I'll get through this, if you women can do it, so can I. (Because I can't have you gals being tougher than me!)

Bill,

I have severe R.A. and am currently being treated with methotrexate, prednisone and arava.

I have a fairly high pain threshold, yet have experienced involuntary muscle spasm in limbs from high levels of pain created by joint inflamation. On occassions the inflammation has become so intense that the swelling was like a half orange on the back of my hand and was severly restricting circulation through my hand.

Some GP's appear to believe the pain from R.A. is no more than an inconvenience or causing mild discomfort. These practitioners then prescribe medication for the pain level they expect will be encountered by the patient.

I believe the reluctance of GP's to prescribe high level pain relief for R.A., results from -

1. Lack of understanding of the varying levels of pain experience by persons with the condition

2. The potential for abuse of the high level pain relief drugs, this conditon sometimes requires

3. The potential for legal action resulting from prescribing these drugs of addiction.

I get R.A. outbreaks in the hands, hips and knees mainly. sometimes an attack can last for a week or as little as a day. There is no pattern to which joints are affected. 

I find that if I commence to take Panadol Osteo when slight pain develops, then I wait till pain builds to a 7/10 or more. I then take a 5mg Endone and a 10 or 15mg Oxycontin. This usually reduces the pain to a discomfort level where I can sleep.

I usually only need the medication for a day or two and when the joint swelling starts to subside I stop the high level pain relief.

I never take a quantity of pain relief so the pain is completely gone. This ensures I am using the minimum dose needed. This helps me keep the dreaded hounds of addiction at bay for me, as using the medication has never become associated with pleasure or total lack of pain.

I have been using Oxycodone for 15 months now and monitor my usage with my GP. who seems happy that I am using it responsibly. I actually requested lower dosage prescriptions when my pain levels stabilised mid last year.

All the best

Errol