How bad will it get?

I won’t write a long list of all the usual symptoms that we all get with having RA; but I was diagnosed with facet joint RA last year and although I’d been having the pain etc, I didn’t associate it with arthritis and didn’t go to the GP because I didn’t think there was a lot that could be done for just a bit of back pain.

Over the last year, things seem to have got worse very quickly… pains in my legs, tingling in my hands/feet, and the fatigue (which is a huge part of it). I’ve had an MRI and been told that I also have a bulging disc in my lower back, which is now pressing on the nerves (hence the leg/hand pains). I’m on medication for nerve pain (amitriptyline) as well as taking codeine/paracetamol for the other pain control.

Being new to this, I have a few questions…
1) I’m currently 42 years old and up until last year I was taking the bike out and cycling 100 miles+ at a time. Twelve months later and I’m at the point where I struggle to take the dogs out for a walk or take the kids to school. How bad is my mobility going to get? Am I looking at being in a wheelchair sometime in the next ten years??

2) Is there anything I can do to improve my fatigue? I’m constantly tired even though I’m sleeping through the night with the help of drugs.

3) I no longer want to socialise with people. I wasn’t one for talking to all and everyone, but at least I’d talk to my friends. Is there anything that can be done to improve my mood? The constant pain and tiredness is to blame, I think.

4) What do people do about work? I was made redundant a couple of years ago and although I’m looking for work, I’m wondering what I’m capable of doing with the reduced mobility and constant tiredness.

5) Does the pain ever go away? I realise that it comes down to pain management i.e. drugs or surgery. But does the pain ever get to a point where you can ignore it, or is it always going to be 24/7?

Any help you can give me will be great! As I said, I’m new to this and feel as though I’m going downhill quickly.

Many thanks!
Adam

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Comments

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  • Carla Kienast
    3 years ago

    Hi Adam: I will echo what Erin has to say about being unable to give you medical advice, but we can share experiences. I will tell you that even though many people when diagnosed face the pain and uncertainty that you are today, they have gone on to have full, useful lives. The main difference that I can ascertain from the details you’ve provided in your story is that you are currently being treated only for the pain whereas you should be evaluated by a rheumatologist who can prescribe a treatment plan to address the progression of the disease. Research and experience has shown that the earlier the disease is treated (not just the pain), the better the outcome. As Erin points out, this is a great site with a lot of information about different medications and other treatments that should be of a lot of value to you. Please keep us posted on your journey.

  • Erin Rush moderator
    3 years ago

    Hi Adam,
    Thank you for reaching out and sharing your story. While we can’t give medical advice online (for your own safety), I have some ideas that might offer some help. First, you might want to check out our Facebook page, https://www.facebook.com/RheumatoidArthritisDotNet. We post new content frequently. It sounds like you have faced some life changing challenges in the past couple of years. I am so sorry, but as you may know, you are not alone. Many of our community members can relate very well to what you are going through. If you haven’t already, you can check out the articles on our website that relate to many of your questions. I would also suggest that you go to your regular physician to get more medical input on your health. Additionally, Here is an article on pain management and RA — https://rheumatoidarthritis.net/symptoms/joints-pain/ as well as one with ideas from the community https://rheumatoidarthritis.net/living/community-ideas-managing-pain/. It sounds like you are already on a medical protocol for pain, but there are some tips in the article you might find helpful. Also, here is an article about some RA facts you may already know, but might find helpful — https://rheumatoidarthritis.net/living/top-5-facts-know-ra/?r=https://rheumatoidarthritis.net/living/top-5-facts-know-ra/?r=. And here is one on some of the lesser known symptoms of RA (including changes in mood) — https://rheumatoidarthritis.net/living/ra-symptoms-unusual-frustrating/?r= . Lastly, this article on how RA can affect cognitive function, including mood, may be helpful – https://rheumatoidarthritis.net/living/just-head-impact-ra-mental-functioning/ I hope you will find some help in taking the ideas that are useful and disregard those that don’t fit your situation. Being newly diagnosed is a rough time for many people living with RA. There are so many changes and so many “what ifs”, but know that you are not alone. Please feel free to come here anytime to share more of your story. Thank you for posting. We’re glad you’re part of the community. Thanks, Erin (RheumatoidArthritis.net Team Member)

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