Not Life, Just Existing

Jill01

Hi, I was diagnosed with RA January 2020 and started on sulfasalazine. Unfortunately at same time was being treated for cancer, which delayed any further treatment until June 2022 when all chemo was completed and I was given all clear. Since June I have been on sulfasalazine, hydroxychloroquine,, prednisolone, naproxen and methotrexate and see little change. The Ra mostly affects my knees and hip with any walking being very painful. I go out to hospital appointments but have cut myself off from making unnecessary trips out due to the pain.I have new granddaughter I can’t play with and just wonder is this it, is this all I’ve got left. What else can I be doing to improve my situation and get back to my previous life. My family have been my rock through everything.

jonr

Hi Jill01,

You'll find a lot of empathy and support with this group and community to add to the support you're getting from your family. Arthritis affects people in so many different ways and it's not just the pain but how it affects one's own mental health as you've outlined in your post.

In terms of pain management, I've found CBD to be quite effective (it's derived from Hemp) as well as a TENS machine. Both products can be bought from pharmacies or online. Then it's a matter of trying to go through the pain barrier to strengthen the joints through physio and exercise. You might start with a gentle stroll or just walking up or down the stairs at home. I use a variety of support socks on my knees and ankles to aid stability and confidence, again all available from pharmacists. I found these vital in the early stages. If your GP surgery has a physio, ask to for a consultation to be assessed with a view to having a personalised plan put together. I do mine daily, takes around 15/20 minutes. It hurt for the first couple of months but as the strength increases around the joints, I found it got easier and actually "doing something" gave me a mental boost.

There's a lot of advice on this website of course and information to take in. What I will say is I think you'll have good days and bad days and there's no correlation between cause and effect, Arthritis at least in my case appears to be an unpredictable condition but it can be managed.

Hang in there and good luck.

Jon

Lane

Hi @Jill01 welcome to our online community where you will meet members to share tips and advice.

I understand that you have RA to your knees and hips which get painful with walking. You started taking medication, after the, all clear from cancer. You wonder if the fun has gone from your life as you cannot enjoy your new granddaughter and your previous life. You appreciate the support you receive from your family.

I have attached a couple of links from our website for you to have a look at; one about hip pain and the other about tips for walking, whilst you wait to connect with our members:

https://www.versusarthritis.org/news/2021/november/ways-to-help-manage-hip-pain/

https://www.versusarthritis.org/news/2022/february/top-tips-for-walking-with-arthritis/

I am so glad that you found us, we are here for you too.

Best wishes.

Baloo

I found it helpful to consider what physical and mental moods I have. For example do I feel productive, or happy, or just fresh, can I redefine being productive so that ordinary activity makes me feel productive instead of special tasks being required, to which of course the answer is sometimes. This did my self confidence a power of good. To know that I can at least redefine feeling happy as a clean washing up bowl, or whatever, and regain a sense of purpose from it.

jamieA

Hi @Jill01

Apart from the hydroxchloroquine, in 2020/21 I'd been through that list and had the same outcome. I was then put onto a biologic - adalimumab - after a fairly frank (on my part) discussion with my consultant. That has made a significant difference. I'm not cured - I still have painful joints at times and there are things I can't do - but at least I can now do most of the things I want to. At the time I was put onto the biologic I was walking with 2 elbow crutches and couldn't close my hands - I'm now walking without aids 50-60kms a week with my dog.

I know everyone is different and even biologics don't work for everyone but you are not at the end of possible treatments that may alleviate your condition. Maybe ask to see your consultant, take someone with you and put it all in writing. When I did that - as well as being put on the biologic - I found myself referred to pain management, rheumatology physio, rheumatology podiatry and occupational therapy - which all helped.

I hope you get a solution soon.

Jill01

JamieA thank you, yr comment makes me think there is some hope. I was losing faith with my consultant but now when I see her in May I will have a frank conversation with her.

Jill01

I’ve spoken with my consultant now and had frank conversation, she says biologics wouldn’t benefit and after yet another round of scans she has referred me to orthopaedics for knee and hip replacement, there is now considerable damage. So I join another list. I’d like to say there light at end of tunnel but still so far away. Due to having recently had colon cancer many painkillers I am unable to use due to constipation side effects and she suggested a capsicum cream to ease some pain will let you know how I get on with that. Thank you for the advice and ideas, everything helps. x

veryaraf

Hi, lots of comments mention constipation. I take co codamol and find the best natural thing is magnesium. When we were children we were given milk of magnesia, syrup of figs, prunes and the like. Hope this helps someone. The tablets are available if you Google get a good quality without too many fillers. All the best. xx

Woofy

https://community.versusarthritis.org/discussion/comment/707900#Comment_707900

Hi jill01

you have been through such a lot. Please don’t give up. I saw my consultant last week. Who has been reluctant to put me on stronger meds, because I had a weak inflammatory marker for RA. I have also tried Hydroxychloraquine, and recently sulphasalazine, which did nothing for me.I had further X-rays on my hands and feet this week, which have shown significant changes, so I have now to start Mex. I have been given a low dose of steroids, to support me until the mex kicks in. I have been so miserable with all this pain, and I haven’t been through a patch of what you’ve had to deal with. My consultant, has told me if the Mex doesn’t suit, there are lots of other alternatives that she can try with me. I hang on to the hope that one day, I might just see a glimmer of my old self again. Everyone on here, has been on a journey, and boy it can be a horrible journey. I do what I can, when I can, and don’t worry if I can’t. That’s the attitude I take now. Keep going, you’ve got this far, don’t give up now. X

frogmorton

Hi @Woofy best of luck with your MTX🤞

@Jill01 I was wondering whether your pain was more to do with the damage already done. I very much hope you don't have to wait too long for surgical help.

Do let us know how you get on.

Toni xx

Nocturne

Looking at Baloo's comment, I was reminded of going on a PPSS (Persistent Physical Symptoms - formerly called Pain Clinic) course for another health condition. One exercise was to look at a favourite activity which is now difficult and figure out exactly what you gained from it (can take a bit of drilling down to find it), then finding an easier way of achieving that effect. Every Health Authority has to offer a similar service and many resources are offered online. GP referral was needed for attending my face to face course. Now my arthritis has worsened I've gone "back to school" to look at those resources again plus new info and tips I'm finding on this site to cheer myself up a bit.

Arthuritis

@Jill01 Given that you have had colon cancer treatment can you request a referral to a gastroenterologist with expertise in treating the RA symptoms of IBD to rule out your RA symptoms being linked to your bowel disease?

https://crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/symptoms/joints

Bacterial overgrowth in those with bowel disease can cause RA symptoms ie damage to joints, and the treatment is biologics and sometimes MTX and antibiotics to reduce bacterial overgrowth which trigger inflammation. There are tests for IBD, plus the colonoscopy which you probably have had. Please be assertive and ask to see an IBD Gastroenterologist. The RA consultant can only see what they know, few will make wider connections, so it’s down to you to check and ensure other sources of inflammation have been objectively ruled out. My RA consultant was adamant that I had RA, and told me I had to live with what I had, and I’d never be able to avoid MTX at max dose , but hey here I am, 10weeks after a course of treatment with antibiotics for another condition and suddenly my RA vanished, no more MTX, and faced with that overwhelming evidence he begrudgingly referred me to a gastroenterologist as I asked, after asking me what I thought it was, and I said given the close relationship between the gut and the immune system, I wanted to rule out IBD/Crohn’s which if untreated, or poorly managed does result in RA symptoms. He’d never heard of it, even though the Crohn’s charity website refers to this and there are rheumatology researchers looking into this. The point is there is a limit to how much an individual consultant can know, so getting a second or third opinion from a different dept that shares symptoms can be very valuable ib determining your future. For them it’s just another patient and another day in the office, for you it’s your entire future. You have to advocate for yourself. Be strong.