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New and not sure what to do

Sep 26, 2015 11:42 PM

I am new to having RA. The meds they have given me so far are not working so I feel my body declining rapidly. Not sure if anyone else has experienced this in the beginning and does it get better?? I am hopeful something will start to work soon. I already have to use a walker full time. I want to be able to use my legs as much as possible. Some days I don't even want to get out if bed. I'm use to going all the time but the fatigue is kicking my butt. I'm so not use to any of this.

Sep 29, 2015 8:29 PM

I'm new on here too. I have fibro. I've had it several years. I Deal with, migraines, depression, insomnia, fatigue, tingling and pain. The hardest thing for me is not being able to do what I used to. I'm 51 and there are days I stay off my feet all day. I hate it when I don't feel up to playing with my 5 year old grandson. Just take one day at a time; that's all we can do.

Sep 30, 2015 12:28 PM

I have both RA and fibro! I am new here today also. Trying to get on top of my symptoms and find others to discuss these lovely diseases.

Sep 30, 2015 2:05 PM

My other half is new to RA too. His story sounds very simular to yours. I know a few younger people with RA that are generally doing alright, in that they work still and the whatnot. Often times they are on meds like immuno-suppressant meds to slow things down. The few family members I have with autoimmune diagnosis say immuno-suppressants can be life savers. Those meds can take a little time to get going though.
Don't be afraid of anti-depressants and meds for neuropathic pain as well. They too can help. You're on the right track by choosing to keep moving. Take self-care/self-love time and be compassionate towards yourself. I like to keep my goals small and just do a little bit each day, pacing myself. I don't personally have RA, but I do have other chronic conditions. Good luck and keep truckin'.

Sep 30, 2015 8:12 PM

I have the related illness ankylosing spondilitis, and boy do I know that feeling. Couldn't get a doctor to take me seriously until I walked into the office with a cane at 22!

But it does get better. There are good medications out there for rheumatoid forms of arthritis. It took me a while (a few months) to find one that worked but when it did oh my was it wonderful. I felt like I got my life back. Not to say that I am completely without pain now, but it was night and day to how I was before I started. Hang in there, and keep at it until you find one that works. Some of the medications do take a while to reach full effectiveness but I found they still helped before that. Some don't notice an effect until later. But if your medication is not working, please call you doctor. They can at least tell you how long you should try it for before switching.

Just remember to give yourself credit for what you are doing to manage this. You have a diagnosis! That's a big first step. You're trying medications! One of them will work. Hope you find relief soon!

Sep 30, 2015 8:58 PM

Warrior01, I was diagnosed with Sjogrens earlier this year and I also have fibro and hypothyroidism. I was so exhausted from the fatigue. Then my doc put me on Plaquenil and not only did it reduce my sjogrens symptoms, it also reduced my fibro pain. I'm still having spells of easy exhaustion, partly from low B12 & iron anemia, so I pace everything I do. And I don't beat myself up if I happen to need a walker or cart at the stores. I'm 53 and have been using a cane since January. I wish you well as you get advice and support from the community on coping strategies. (((Hugs))) and a prayer for you! 🙏🌼

Sep 30, 2015 9:07 PM

Shimmer,
I had the same problem with ignorant doctors not taking me seriously until I needed a cane. We're pretty close in age, I was 14, but am walking again at 15. I guess my only advice is always ask questions, and do not trust doctors the first time you meet them.

Sep 30, 2015 9:08 PM

Welcome to our little family, there is a lot of good compassionate and caring people. This is a non judgment zone where you can say and talk about anything. Someone is always here if you need to talk. I have Osteoarthritis, Syringomyelia, Syrinx , Fibromyalgia, Degenerative disk disease, as well as several more. I take Gabapentin 800 mg, Savella 50 mg for nerve pain, Fentanyl Patches 50 mg, Hyrocodone / Acetaminophen 325 / 7.5 for pain. Don't give up it takes time to get the right combination of medications. Call your Dr and ask how long you should wait to see if the meds you are on are working, and if you need to try something else. Good luck, will keep all of y'all in my prayers, sending hugs.

Sep 30, 2015 9:11 PM

Thanks. I called my Dr Tuesday and she wants me to stay at the same dose until I go to the RA Dr on the 8th. I took an extra Neurotin in between doses and it didn't help any thing.

Sep 30, 2015 9:43 PM

Ask your Dr about putting you on Savalla to go with the Gabapentin. It has been a life saver for me.

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