frustrated with pain

[fear-of-nothing]

With just finding out that I have RA and have seen the specialist once who ordered a bunch of new blood work I am in so much pain and frustrated. As suggested I called his office at the beginning of last week well knowing that my second round of blood work would or should be in. I called and explained that I am in a lot of pain and what could I take since Tylenol and Advil can not be taken with Celebrex . The doctor was working at a off site that day but she would email him and promised to get back to me. She did call and the doctor said for me to take 2 Tylenol arthritis morning and night along with the Celebrex which I have been on anti-inflame since February. So I went and bought the Tylenol Arthritis and by the end of last week I could not take the pain anymore so I made an appointment with my family doctor. She had my blood results and was shocked that my levels have increased even higher within 6 weeks. It was 263 and suppose to be under 14 it is now 397. She immediately gave me a pain medication that can be taken with Celebrex. I told her I was disappointed with this specialist and that I understand he does not know me as a patient yet or understand how high of a pain tolerance I have and that I never see a doctor unless I really have to but what I do not get is why would he not have his office call me with the results and ask me to come in sooner and start the preventative medication with my levels increasing . My understanding is the longer this goes untreated the more damage is done. She told me when I see him Oct 8th to tell him how upset I am but I wonder if anyone else experienced this . I just feel that we are more human to animals who are injured sick or in pain than humans .

[Hidden]

First of all I'm so sorry you have been left in such pain Fear-of-nothing. I think it's a little different in this country - many people here get their pain meds prescribed by their GP (family doctor) rather than the consultant rheumatologist. Has anyone offered you a steroid shot while you wait to hear back from the specialist? I'm not quite sure which of your results it is that's so high but is it not possible for your family doctor to contact your specialist directly on your behalf and then prescribe you a drug such as Methotrexate herself as well as a steroid injection to tide you over? Twitchy

[fear-of-nothing in reply to Hidden]

thanks for reply twitchy.....yes she is going to contact him ...the level I am referring to is the rf level which should be under 14 ....and the nurse is going to see if there is another ra specialist can see me before oct 8 ...however like all good specialist there is a long waiting list ...i just got the impression that he deals with this everyday because he specializes in ( rheumatology and interest in metabolic bone disease) that he has lost the patient compassion and how to explain what this disease is about .....what is going to happen in the future medication wise ....possible things one could experience etc......now i have developed a rash at the end of my toe joints that is extremely sore to even touch....can to be on my feet for more then 1 hour at a time sends me through the roof....so disappointed at this point my heart goes out to kids who have this it is just out and out brutal....hopefully with the call from the gp i may get in sooner to see him...

[nomoreheels]

What a situation. I'm so sorry you've gone through this on top of the pain you have. It's seems unnecessary & unkind. Maybe it's the way your Rheumy works but it doesn't appear a particularly good one. I don't quite understand why more bloods were requested, unless he feels there is something else underlying he is needing to treat alongside your RD?

As you're already taking Celebrex, which in my view is a pretty good med, you're right not taking paracetamol or ibuprofen but there are other better pain relief meds which can be taken in conjunction. I'm guessing you're experiencing a flare as a result of your RD raging away not having started the necesarry treatment to help bring the inflammation down. Celebrex (or celecoxib) alone won't help so much with that sort of pain or inflammation when in flare. It was one of the first meds prescribed at the diagnostic clinic before I had my initial appointment with my Consultant though I was also given hydroxychloroquine, nabutemone & oral steroids & these made a huge difference. They were altered somewhat 3 months later but the mix did ease my pain & stiffness.

I no longer take celecoxib but do take etoricoxib which is of the same group of meds & it makes a difference but only when taken with the my other meds. My GP has recently added buprenorphine to my armoury since my last appointment with my Rheumy when she asked her to perform a complete pain med review. Maybe if your GP has prescribed something stronger for you it will help at least take the edge off your pain so you can at least function somewhat better. Allow it to work by not overdoing things though & do rest when things become too much to let your body recover somewhat. Try & relax too. I know that will be difficult but the more you hold yourself because of the pain the more your muscles will contract & that will add more pain. The voice of experience talking here!

Do bear in mind though it's best to halt any pain relief or anti inflammatory a good few days before your next set of bloods to get good baseline results. It's not a pleasant thing to do but worth it to have honest results for your Rheumy to see exactly how your RD lies & gives him the best picture in determining the most effecive treatment to prescribe for the sake of a few days off your meds.

I hope you feel at least a little better in the morning & a good restful sleep eases your pain. Maybe a nice warm bath would help?

[fear-of-nothing in reply to nomoreheels]

thanks nomoreheels for the kind words....my gp prescribed me today hydromorphone along with omeprazole ...and I do try to rest as much as I can .....glad to hear someone else thinks this doctor is not the best .......sure hope my gp can find me someone else that has some compassion ....

[nomoreheels in reply to fear-of-nothing]

That certainly should knock it on the head!! Maybe the Rheumy has lost sight of newly diagnosed patients needing reassurance, guidance & more importantly help from the first appointment. Not that it excuses his attitude but I've been fortunate with each of my 4, though my latest is different again! Guess they're only human after all lol!

[cathie]

Don't hang around with unhelpfulreheumy.

Xc