Hi, I developed psoriatic arthropathy when about 25 - I am now in my 60's. Apart from the initial 6 months I have controlled the disease with a small amount of NSAIDs per year. This last year has been very different - a complete explosion with any amount of NSAIDs having little effect.
Eventually I just started methotrexate and depending on that I will have my knees replaced. But every day & night I am stiff and wracked with inflammation and pain in so many joints. I have simplified my diet considerably - GF, dairyfree, no alcohol, no nightshades, a fair number of green juices. Yet the pain and stiffness spreads and never lets go.
Who was I a year ago? I played badminton, swam, worked a very physical nightshift. Who am I now?
I am in danger of getting very depressed. This mostly because of the volatility. I sometimes get a good day, and think, yes, I am getting some sort of control. Then next day/night wham and I am back down.
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andyswarbs
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We are all feeling like your feeling today me as well. YOu would think with spring here we would all feel brighter,but oh no we all feel crap at the moment. Just know your not alone darling. Big cyber hugs from me.xxxx
I have just joined HealthUnlocked and now I am not alone. I do have a life-partner, my wife who is extremely good & helpful in every way, except one.
She cannot deal with my depression, she cannot hear me talking about it or trying to express it in any way. But I have to find a way of talking about depression, otherwise I worry that it may get the better of me.
It gets very hard sometimes, my my wife's my rock but she doesn't fully understand the fully what this disease does to us but she tries her best, and I said to myself when I got this disease that I wouldn't get depressed but it's very hard sometimes and then I come on here and I know I'm not alone there are people worse off than me so I give my self a shake and go again but I know how you feel best wishes
Possibly she avoids the subject of your depression because she feels impotent as she does not know how to handle it. It can be frightening seeing someone you care about depressed. You know what it is like if someone breaks a leg they get tea and sympathy mention mental illness, depression and it is a completley diffirent story.
Hard for you though as I believe RA brings with it depression we loose so much of our independence and the pain if uncontrolled is difficult to live with.
The NRAS have some excellent booklets on the subject, and there is the helpline.Or you could speak to your GP about a referral to a counsellor.
It's tough, and especially if you have gone so long with it under control. But please don't feel bad about feeling down - it gets to all of us and trying to pretend it doesn't or feel guilty about letting it get to you can make things worse.
Have you thought about keeping a diary? Sometimes that can help show very small improvements that you otherwise might not notice, and can also be useful for showing docs how this is affecting youand whether they can tweak your drug regime to help.
The NRAS helpline are also brilliant, and you may have a local group nearby that you could join. Or just come on here and vent...we're all in a similar boat even if some of us are in calmer water than you are right now.
I wasn't thinking so much of a heart & soul diary, but more something that makes you feel more in control of your symptoms, and hopefully allows you to see if there are any miniscule improvements. I used diagrams, see link here....
I've lived with depression longer than I have with RA and have found a few things that have helped me over the years so here is a short list and maybe one thing will click with you and help for a while (then switch to another thing that may help)
. Getting outside in the sun - at my lowest I wrapped myself up in a 4 season sleeping bag and curled up on our garden bench for a few hours in the February sun!
. Keeping a gratitude diary - for a while I did this each day at the end of the day to remind myself that I still had good things in my life and some times all I could write was things like 'thank you for running water in my house', thank you for electricity that comes to my home', I always had 'thank you for the love and kindness I receive and give in my day
Continued as my computer kicked me out of my response before I had done ("how rude!)
. Talking to someone ... I went through my GP who fixed me up with a counsellor - I had to wait for nearly 8 weeks but it was worth it.
. When I am down I carb load and then feel 'stodgy' and it makes my mood lower so I keep tabs on this trying to eat fresh and drink plenty of water (but don't always manage it every time)
. Mindfulness meditation has really helped me and every now and again I dip into a class but otherwise just use an App or do it for myself.
Well Andy I am hope something in there was of use to you
I have ankylosing spondylitis (probably from about the age of 15) and like you kept it at bay just with regular low impact exercise, NSAIDs occasionally and a bit of physio. It was fine until I was about 50, then all H*ll broke lose and I became very very disabled and constantly in a painful flare. DMARDs generally dont actually have a disease modifying effect on the spondyloarthritis types of inflammatory arthritis, though MTX, and SSZ are usually worth trying because they can give some relief for the peripheral arthritis (though seldom have an impact on the spinal bits). If you aren't getting significant response from MTX, then its probably time to go back to the rheumatologist and ask about biologics, as that would be the next step. To knock a flare and give you a break from the pain, you could ask about a short course of prednisolone, but be warned that you will probably flare right back up again once you stop the pred, and pred isn't a drug you want to take lightly or for long because of all the nasty side effects.
If you are interested in looking at diet, then quite a number of folk with spondyloarthritis get significant benefit from either a very low or no starch diet (there is a theory about that helping starve out klebsiella in the gut, which is purported to be a trigger for the autoimmune spondy response). There are diet forums on both the KickAS and Spondyloarthritis Society of America forums, both of which also have a lot of folk with PsA who could answer a lot of your questions.
Hi Andy. You are absolutely right to talk about your depression. Keeping things to yourself can only cause further problems. It is understandable that your wife doesn't want to talk about it because she loves you and is concerned. Even though our loved ones sympathise and care about us they don't always understand it. Most people can deal with physical illnesses or broken bones etc but when it comes to pain, depression or any kind of mental illness you need to speak to the professionals. You could speak to someone like the Samaritans who have trained people to deal with depression and have the time to listen and advise or you could always call the NRAS helpline and speak to someone. I had a bout of depression and my GP was less than useless so I rang NRAS and the lady I spoke to was very helpful and reassuring. I was on the phone for ages and never felt like I was being rushed. She said I could call anytime but I felt so much better speaking to someone who understands. Please keep in touch on the site and don't ever feel alone. We are always here. Best wishes.
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