Hello everyone, just came across this site whilst looking for support groups and the like. Usually when registering for a new forum I lurk for a while first, but I've registered to at least introduce myself.
Anyway, I was diagnosed January gone, am being treated at the minute with methotrexate but apart from the initial improvement following a 6 month wait for diagnosis I don't seem to be getting any better. I know it's early days yet but some days (like today) I just wonder how those of you who have suffered with it for years cope with the day to day pain?
I haven't had it for years, Mr Dexter, but I've been dealing with it since last year. You know, I AM better than I was when I was first diagnosed, because back then, I wasn't very functional. I don't think the pain ever really goes away, though - I'm on MTX, prednisone & celebrex. That combination means I can do most of what I did before. It just hurts. I don't think I ever don't think about it, but I have learned to go on. There are people here who have dealt with it for a decade or more.
Anyway, welcome!
Welcome MrDexter,
I've had RA for over 6 years. Although pain is a constant in one way or another, it shouldn't be ignored. Pain is an indication that something is wrong. It has actually been long enough that you should be some signs of improvement. When was you last doctor's visit and your next one?
You probably need to let the doctor know that you don't feel like you are improving and that you are in so much pain. Being aggressive early is so important to avoid damage.
You will have to let us know how treatment varies in your part of the world. Other countries are trying new therapies that we don't even here about.
Best thing is to educate yourself as much as possible. Coming here is great because everyone is supportive and it always seems that at least one other person has had the same kind of problem. It is very comforting.
First thing with pain is to find out the particular cause. RA affects joints, but it also affects you system wide including heart, lung, kidneys. Any severe pain should be examined by the doctor. This avoids unnecessary suffering and damage. Once damage occurs, you do have to live with the pain. Pain also comes when you have a flare. But again, flares need treatment by the doctor. You should be communicating with your doctor regarding these because they can change medicines, etc. to really help you out. Some people also have Fibromylagia which is inflammation of your muscles and certain trigger points. Once you have one immune disease, others can follow as many of us have discovered. Plus, it takes awhile for doctors to figure all of this out. Patients who see their doctor more frequently and are better educated on the disease usually do better.
Now, the question of actually dealing with the pain. Pain relievers are very helpful and when you are in real need of them, they are not usually addictive. Also using heat or cold can give a lot of relief. Sports cremes do help. Rest is important when your pain and fatigue are active. Distraction into activities that you really love or that make you really focus can help. Hanging out with friends and family if they don't stress you. Avoiding stress. Phone calls if you are a talker. I almost always focus out my pain when I'm talking to someone I care about.
Physical therapy and exercise that your body can handle also helps with the pain. We have several threads that talk about pain and fatigue. You might want to check them out.
Again, welcome aboard and let us know how you progress.
Thank you both for the warm welcome. I have read many posts since I made my first one, and I must say I have learnt a lot.Hello and welcome...we have the best arthritis board on the web here. Lots of good info, lots of support, and friends who care and understand. It is a good place to be.
You will find many answers here and you will also discover that a daily check in here can be very therapuetic.
MrDexter, it seems odd that it is so long until your next appointment with your specialist. I believe that most people here are seeing theirs 2-3 months (there's a thread somewhere on this on how often do you see your rheumy). Many on those you are newly diagnosed see the rheumatologist even more often until they get the mix of medications right. Hopefully you can get the attention of your doctor.
I have never heard of paracetamol and dichlofenac.
Also, after 6 years, I find that daily I am still coming to terms with this disease and what it means for my life has changed over time. I think that generally the effect is minimized publicly and through many of the web sites. So, that makes it even harder.
It seems that they should be doing more for you. You level of pain and the affect of it on your daily life warrants more attention.
I hope you do better.
That's about the going rate over here, I went to my GP for intital tests July 2005, straight away they said they think it's RA but they would test for Gout and a few other things whilst they waited for a referral. My referral came through January, and I had another appointment end of February. Since then I have seen the nurse once, the specialist at the beginning of this month, and now every 4 months.I was glad to see this site again, but I do miss the chat room
Many late nights I couldn't sleep there was always someone there.
I have been having a bad time lately. Lots of pain seems like everywhere. Thank goodness I have a job where I can sit
RA since 6 months old but was never told until I was diagnosed again 5 yrs ago when I had severe fatigue, low grade fever etc. this lasted about 2 months and then came the pain, it was awful. Now flares at least once a month.
Suzzyq
Hey suz...I am here alot late at night since I work nights. I am just getting ready to go to sleep and it is 10 am. I will see you around!It really seems like you need more aggressive treatment. I hope you get that. This disease is really, really hard on a person. Accepting that you have is difficult for everyone. But as we say in the southwest, "take the bull by the horns and go for it." Face it head on with the most knowledge you can.
I sure hope you get a doctor that gives you more than over the counter meds. You need something that is trying to reverse and stop the disease.
Welcome MrDexter! I do hope you will be feeling better soon. I was diagnosed with RA in March. Taking Prednisone since & been on MTX for about 8 weeks now. Prednisone is being cut down & the MTX was increased to 6 pills once weekly. I must say that I'm feeling somewhat better. I'm able to do some of the things that I couldn't before. I still have hurting at times. I can't put ANY strain on my hands & the old neck won't turn. lol But I will say all in all the MTX is starting to help me. My right hand is more disfigured than the right.
I saw my RD every 2 weeks for 6 weeks & now every month. Seems like you need to see him more often.
Deanna, the DICLOFENAC is the substitute for VOLTAREN. My husband has been that for many years for his Psoriac Arthritis.
Have a wonderful weekend.
Trisha
Hi MrDexter and welcome!
Re. pain, I need to take regular codeine combined with paracetamol/tylenol, but even that is not enough at present to deal with the pain. (I'm also on high-dose indomethacin - a strong anti-inflammatory).
l'm going back to my GP to see what to try next - maybe tramadol/ultram? They all have annoying side-effects though, like constipation/feeling drowsy etc :(
I reckon joint pain must be one of the worst kinds of pain - what do others think?!
Wishing everyone well - this forum is so great :)
Thanks all for the replies, I can't stress enough how good it feels that someone understands (but then I guess you all alreayd know this).