Hi everyone! I am hoping to find some support as well as information here. I am 30 years old, and for the past 6 months, I have been experiencing knee, hand, wrist, foot, and ankle pain. I also have been experiencing swelling at my joints, fatigue, no appetite, and occasionally, low grade fevers. My pain is the worst first thing in the am, when I wake from bed, I honestly feel like my ankles and knees are going to collapse.
Two months ago I decided that my pain was not going away, and was in fact getting worse. I now have two toes that are beginning to curl under. I thought obtaining a RA diagnosis would be simple. Boy, was I wrong. I have had two ANA profiles done in these past two months. My RA factor is 8.7, Hemoglobin 14.1, and sed is 4. I was placed on Predinsone, but was unable to tolerate the side effects. I was staying awake 36 hours at a time on a low dosage. Now my doctor just has me taking Darvocet for the pain 4X a day. My first appointment with a Rheumatologist isn't until 9/27. What should/can I do in the meantime? I feel so discouraged because I see no relief in sight, and feel worse as everyday passes. Friends have suggested exercises, but how can you exercise when I can barely walk across the room?
Any feedback, support, comments will be much appreciated.
Thanks for taking the time to listen,
Panz
Hi Panz,
You're kind of stuck until you can see the Rheumy because prednisone is about the only thing other doctors will prescribe until you are evaluated. It does sound like RA.
Some people cannot tolerate prednisone. But also what dosage did they try you at? can go and see your GP and at least ask for something like Celebrex or Motrin for general inflammation and then also ask for you can take tylenol or ibuprofen (depends on what they prescribe on what you can take).
Some GPs will go ahead and start you on MTX. But yours might be hesitant since your appointment is fairly soon. However, that is no reason for you to have to remain in pain. Since the Darvocet does not seem to be enough, you might ask for Vicodin or Percocet.
It does take awhile to get the diagnosis and a treatment plan that will work for you. The medicines that use also take time to work.
As for your friends, ignore them. They don't understand. I had the same thing happen to me after I got out of the hospital with chest pains. There are exercises and alternatives that can help you, but it won't be like what your friends are thinking about.
First, hot and cold can help minimize the pain. Try packing your feet in ice, or soaking them in hot water. Look for shoes that very supportive and try the gel packs, and whatever else that you believe will help.
Don't give up and feel discouraged. It showed a lot of inititive and strength to push to find out if this is RA.
Keep coming here. Lots of people want to help you through this journey. And, people here will understand what you are going through.
You can try going back to your doctor and see if there is anything that can be tried in the meantime before seeing the Rheumy.
Hi Panz, and Welcome, you came to the right place for support and answers!!Dear panz,
Deanna gave you good advice. It can take a really long time to get a definitive diagnosis of RA and having negative bloodwork does not necessarily mean you don't have it. It took 8 years of seeing a rheumatologist to have the bloodwork show positive and to finally get an answer for me. After that puzzle was solved, other things fit into place and I was diagnosed with Sjogren's Syndrome. Before, I was told I had OA and fibromyalgia. The important thing is to get treatment and some relief. It sounds like you are set up to see the rheumatologist fairly soon but still September is a long time to wait when you are in pain.
I'm curious about when you took the prednisone and if it relieved the pain. My rheumy told me to take it first thing in the morning since it can cause insomnia. I'm still on a low dose 2 years later and it really makes a difference.
One thing I do when I'm really hurting is to get into a warm pool or bath. A hot bath right before bed really helps me to relax and sleep. I joined a gym with a warm water therapy pool. I do gentle range of motion exercises that I couldn't begin to do on land because they would put too much stress on the joints. If I really hurt, I just hang from a noodle. I've met a lot of people in the same situation in the pool so that's theraputic too.
I'm glad you found this site. It's a good way to get support and information. Linda
If you have to wait to see the RD, you may want to ask your GP to test for the Anti-CCP. This test is more specific to ra and will most likely be requested by your RD anyway. So why wait to see the RD, then wait for another week for the additional blood test? Best wishes. Every one here has given you some good advice, I really think that you need an anti-inflammatory like Ibuprofen, Naproxen or Asprine. As long as you have no allergies or any other medical condition that prevents you from taking one of those meds, you should include one of them in your daily regimine. They are safe to take with Darvocet and may help a bit.Hi panz,
I was also recently diagnosed. I am 25. I had foot, ankle, knee, hip, shoulder, wrists, hand and jaw pain for 10 months before they finally diagnosed it. I went to lots of docs and finally I got on the internet and looked my symptoms up and asked my GP for an RA test. He was surprised when it came back pos. I was confused too, because I had to take more tests to to find out if i really had it at my RA docs office. Anyway...
The first thing I recomend is see if you can get on the cancelation list for your RA doc. I did and i got in two weeks later. The other thing is there are other docs out there so you can call the Arthritis foundation in your area and they will give you a list of docs. I found a very good doctor that way. You should be able to get in before that.
The excersize thing. I only swim and somedays I can only lightly kick...like today (I mostly floated). Everything else hurts too much right now. I haven't really excersized since the pain got bad (in Oct), but my goal is to get back to an hour a day. As of right now I swim for however long I can handle that day. I don't have to drive somewhere for a pool so it makes it easier.
I like the ice hot patches, because I can wear them under my cloths and the stay hot/cold for a good amount of time.
I was on celebrex and vicodin before I was able to see the RA doc. The celebrex works for me (to a point, but I can walk and some days pretty easily too) my RA doc still has me on it. I didn't like prednisone either.
It will get better. I saw my RA doc 4 weeks ago and things are moving, slowly, but moving.I have a a good friend and my husband and his parents and my mom really help alot. So do the women who work for me at my store. It helps to have people who know what you are going through or at least try.
I just try to think I was lucky to catch it early and there is medicine to make you feel better and I can wear cute shoes again someday. Ok thats not the only thing I worried about, but it makes me laugh. Anyway I am planning on being my self again by Christmas. I'll give the medicine some time to do its thing and I will believe in it and on the days I am having a hard time doing that I go to a friend/family or here. I know its not automatic so I expect to be in some pain for a little longer, but not forever. I'm just happy I got this instead of something else. sorry i talk too much. Hope this helped.
Thanks everyone for all your advice. I contacted the rheumy's office las week to see if I could be placed on the cancellation list, only no such list exist. Apparently, this doc does a lot of research and only sees pt's 3 days a week. I tried to find another rheumy, but there is only 2 in my area, and I have the dreaded HMO.
I take Motrin 800mg in addition to the darvy's, well actaully I mostly take motrin during the day since I'm at work. I am going to request that CCP test. I work for a doctor's office, so I am going to refer w/ my boss over what steps I should take next.
Thanks for all the positive comments. I thought maybe it was in my head because according to the bloodwork, which the nurse said was the best she's seen in twenty years, I'm healthy as a horse. Never thought I'd cry when you're told you're a healthy person!
Anyway, thnx again!
Ah, but you know you are not a healthy person no matter what the bloodwork says.
I've been collecting my medical records for SS. I was pretty shocked to read what my GP wrote on my diagnosis in the early stages of the disease. They did not want to deal with it. Even after being in the hospital twice, they had the nerve to suggest that it was all in my head and maybe I should see a pain specialist. That kind of treatment is a cop out.
It was especially irresponsible of them because I was diagnosed with vasculitis, which can be life threatening, before being diagnosed with RA.
You go with your instincts and fight for your answers. Once you get the right treatments, you can have the possibility of having many good days and having a lot of your function return. It will not always be this bad.
Hi Panz,
I'm so sorry the cancelation list didn't work. I live in a pretty large city so I guess I am used to lots of choices on Docs. I have noticed alot of RA docs do alot of research and only see patients on certain days. Two docs here that I've seen are like that and they are supposed to be the two top ones in my area. One doesn't even see new patients anymore, but I was lucky I had a friend who's parents knew him. I only met with him and send him my records, because I felt bad that he does mostly research now and he saw me as a favor to a friend, but he was interested in my condition and he told me he would be happy to see me as a patient, but still and I like my Doc now.
I agree with Deanna, she has given me some good advice too. Go with how you feel, its your body and you know it better than anyone. My GP only gave me the test because I told him to and he was very skeptical, he tested me for 7 other things and RA was the only one that came out pos. He felt bad after that, but he learned something.
Nurses can sometimes say things and not realize how it will make you feel, she has probably never had pain that barley showed on the surface and noone knew why, but was real just the same. I think alot of people think its in there head...I did! I thought I was crazy and that made me depressed. I'm better now that I know that I am not crazy. Things will get better.
Again I'm sorry you can't get in sooner, but once you do things will start moving.