Wednesday, December 02, 2009 johnstonx5 asks

Q: How long do I have before it becomes unbearable pain?

I am a 31 year old very active wife and mother of three. I run and lift weights 3-4 days a week (except for the last month and a half). I have just been diagnosed with rheumatoid arthritis. I have aches and pains throughout my body. My left eye has been permanently blurred and has shooting pains behind it. Most of my pain is not severe just aches and an annoyance. The shooting pains only last a few seconds and my hands feel like they are being shocked with electricity. I don't need pain meds other than asprin and acetaminophen.

My question is: How much longer do I have before severe pain strikes and I am going to need a more powerful drug for pain. How long did it take you from onset.

As I said, I was just diagnosed recently (2days ago) and I am waiting for an appt. with a specialist. So, I have not started any meds and I am still a little in the dark about this disease.

Any help or advice would be greatly appreciated.

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Answers (5)

Brad, Health Guide

12/ 5/09 3:12am

Hi,

You have found a great place for info. I understand how overwhelming it can be just recieiving your dx. I am glad your pain is not too terrible. Hopefully you have caught it soon enough and can really get a good jump on the meds. You say you are waiting to see a specailist? Have you not seen a Rheumatologist yet? None of us are medical professionals, so we can only offer views from our personal experiences. I was dxd a year ago and have severe RA. I take many different meds, Arava, Salagen, Vicodin, Humira etc. I have not found the right mix yet and start Rituxin soon to replace the Humira. No two cases are the same, what works for me may not work for you. Hopefully you will find the right meds soon and feel better. There is a great article on this site for people newly diagnosed with RA. I hope it helps you. Stay in touch with us and let us know how you are doing.

Brad

oftentired

12/ 2/09 11:39pm

There is so much for you to learn. Evidently RA can be mild,moderate, or severe. I was at the severe level right from day 1 so I cannot speak for the others. Because of your youth they will want to treat you more aggressively. They rely on what you tell them and what your lab results are. There are different meds and finding out what works for you will be trial and error. Rheumatology is a different world for sure. I went from unable to walk, drive, or open the refrig to running and jumping.....once I had been on Enbrel for 3 months. I lost insurance earlier this year and have gone back to

the very painful state. I think that getting diagnosed is the worst part..... but don't panic..............there is something that will help. I hope they get you feeling better quickly!!

carqueenbee

12/ 3/09 2:10am

Enbrel does have a program that will help you pay for your RX. There are also several grants available for RA patients to help with RX. Call enbrel directly to see if you qualify, well worth it!

carqueenbee

12/ 3/09 2:07am

Everyone is different. I was diagnoised over 25 yrs ago so there weren't as many options then. Some people go on fine like that for a while, having good days and bad days. It is so good you are exercising and weight lifting, that will help as well. Don't stop that. It seems once you take some time off it is very difficult to get back to it.

For me, my body was so resistant to so many drugs that it was difficult in the beginning. When my RA decided to "appear" it moved very quickly. It started in one shoulder then the other a week later and within a month I was unable to move and was bed ridden needing help to do everything. Thankfully that is not common anymore. Treatments are usually much more aggressive so that won't happen.

Make sure you like your Rheumy, it makes such a difference in your treatment options, and makes it much better if you have a good relationship with them.

I am now able to exercise and do weight lifting, just not as much as I once did in my upper body. So lucky!

beefos09

12/ 4/09 3:27pm

I'm 34-years old, and I'm also a highly active woman who hike(d) 8+ miles every weekend and worked out several days a week. My first symptoms were like yours early this year (2009), and then within just a few months I developed "mittens" during flare-ups ... it felt like my hands were dipped in hot vats of liquid pain up to my elbows. Otherwise, I just had general stiffness and the inability to grasp plus tenderness in my other joints. As other people have said - the experience will be different for everyone.

I can tell you that because of my age (so potentially your RD will do the same) I have only been put on Methotrexate since my official diagnosis in June 09. I started with 3 pills (2.5mg) a week and that didn't do much, but now I take 5 pills a week and that covers 80% of the general stiffness and overal pain. However, I haven't been able to hike or go to the gym with any regularity - but it has been better recently - since April/May even with the Methotrexate. My doctor is increasing my dosage to 8 pills a week which should get me back to 100% of my pre-RA acitivity level with no flare-ups.

Because you are just being diagnosed this year, I can tell you we are very lucky compared to those diagnosed years ago (as you have read). The probability that we will never have to take anything except Methotrexate is high, and supposedly we should go the rest of our lives with very minimal damage, if any. That being said, Methotrexate is hard on the gi system, so I am actually switching to liquid form (shots using small needles like diabetics use) so that I don't have to take pills any more.

Your doctor would know better, but your eye issue could be a seperate autoimmune disease - I guess it's very common to end up with side diseases especially having to do with the eyes or the thyroid.

Best of luck, johnstonx5 - know that once you get through all the diagnosis and initial doctor's visits you'll be back in the gym and running after your kids like a trooper! :) If you have a flare-up, hang in there and remember it does pass and you are on the road to pain management!

Ellen Galo

12/ 7/09 12:58pm

I will just make a couple of comments since you've already gotten some good answers to start. Aspirin and tylenol may work for you - but they will not prevent joint damage. Aspirin (depending on how much you take) can be hard on the stomach. Tylenol can be hard on the liver if you take too much. I was only taking half of the recommended max and my liver acted up. So now I'm off Tylenol. But most people are OK if they stay within recommended max (not more than 4 g/day. I was only taking 1.5 to 2).

But - about your eye. Are you sure that is related to the RA? What does your doctor say? I would definitely go to an ophthamologist to get it checked out either way, you don't want to take any chances there! However, that said, I remember something I recently read about "sub-occipital syndrome" or occipital neuralgia which I have a problem with. It's basically muscle spasms (could be from fibromyalgia) in the neck and shoulders. This can cause the blurring and the shooting pains. You may get some relief with a muscle relaxer such as Flexeril (cyclobenzaprine) which I have had to take quite often. I usually take 10 mg at night a couple hours before bedtime (but be prepared to rest or sleep whenever you first take it - it may hit you harder if you're sleep-deprived. Another possibility is amitriptyline (Elavil): 5 - 10 mg for sleep. If you're not getting Stage 4 sleep, your muscles aren't getting the rest and healing that they need and tense muscles and spasms can result. These 2 drugs will help in a way that other sleep meds may not. Hope this helps!

Q: How long do I have before it becomes unbearable pain?

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