Inflammatory arthritis and fibromyalgia

amax67

Hi everyone,
I'm Ann, I am a( soon to be 52yr old) sufferer of inflammatory arthritis and fibromyalgia. My pain is chronic and because of a recent illness, multiple blood clots in both lungs, my doctor's have taken me of all anti inflammatory medication. Since I will be on blood thinners for the rest of my life it appears I will not be prescribed anti inflammatories again. Although I do have pain medication it doesn't seem to help my symptoms, I was wondering has anyone else find themselves in a similar position and if so how to you manage day to day with chronic pain. I feel really down at the minute and can't stand the thought of my husband and children becoming carers. I feel since coming home from hospital I am reliant on them more and I am slowly loosing my independence. I love them all dearly and dread becoming a burden.
Thanks for allowing me an outlet for my worries.
Ann

stickywicket

Hi Ann and welcome. I'm sorry you seem to be going through the mill right now. Sometimes things just seem to pile up, don't they and then our fears run rampant?

You say you have inflammatory arthritis. So, are you able to still take DMARDS? Quite a few of us can't take NSAIDS. I can't because they damaged my stomach years ago. I have RA and OA.

I guess there's no getting away from pain. But it helps if we eat healthily, stick to a healthy weight and exercise our joints. Exercise is essential for me. It keeps our muscles strong and strong muscles support our joints better so they hurt less.

I also use distraction as a first resource against pain. Anything that takes the mind off it works. That will be different things for different people. I'm currently having a ball with the cricket world cup. It is a fact that the more we concentrate on our pain the more we feel it and vice versa.

I think none of us wishes our loved ones to be our carers. I'm now in a position where, if I want to go for a walk, my husband or sons have to push me in a wheelchair. My husband sometimes has to do up or undo fiddly buttons for me. It's no big deal. I care for him too. I still cook his meals, wash his clothes, buy his food etc. There's always stuff we can do for others to counteract what they do for us. Keeping ourselves as fit as possible by the exercises and healthy eating is, I think, the way to success.

I often find the time immediately after being in hospital (I'm a frequent flyer!) I can feel a bit low. It's a big shift and we're still far from our best either physically or mentally but, with time and effort, we get there. I'm sure you will too.

amax67

Thank you so much for your encouragement, I'm currently undergoing test for injections, Dmards is still being considered but because of other issues,fatty liver disease, some treatments are not considered. I finally got an appointment for rheumetoligy after a three year wait. So I'm hopeful things will start to move quickly. Have a good Monday t4591

stickywicket

I'm trying to have a good Monday, Ann, but Arg&s are doing their best to thwart that

Great news that you'll be seeing a rheumatologist. Less great about the fatty liver problems but, hey, I believe the recommended diet is virtually the same as for arthritis – lots of lovely fruit and veg (I've just ordered more mangos and cherries and will be prepping a tuna salad for our evening meal) and, if my memory serves me right, exercise is good for that too so you can kill two birds with one stone. Perfect! Slowly but surely is the way to go. Good luck

dreamdaisy

Hello again, I'm having another bash at answering you hopefully without deleting the lot.

It sounds as though you are in the early stages of the arthritis, is that right? I am in my 23rd year of it (I am now 60), I began in 1997 but was not accurately diagnosed until 2006. OA was diagnosed in 2011 and fibro shortly after that. I am in trouble at the moment probably thanks to a change in medication for my psoriatic arthritis so have been under the fibro cosh for some time now, I think at least a couple of months.

I deliberately did not have children because I knew what I would be passing on so that leaves me and my husband to sort things out and between us we muddle through. I am conscious that I might become a burden as the indignities of old age begin to bite along with the arthritis etc. but I have prepared as best I can by making alterations to household equipment, using mobility aids to preserve as much movement as I can, exercising suitably for the same reason and other things such as all my usual daily clothing is now pull-on-pull-off so I can cope with it. I was born with auto-immune dross so this is merely more of the same. He now does all the cooking and shopping but I still do laundry, ironing and cleaning his surroundings, so I care for him.

Everyone is different in every way: in physiology, psychology, emotionally, circumstances, all this and more is as individual as us. What works for me may well not be as effective for you but I have been doing the ill-health ABC since childhood so it's a way of life. (ABC = adapt, believe, compromise). We get it because we've all got it. DD

amax67

Thanks everyone for your replies,
I have been dealing with the symptoms for 15 years or more and have been told it was depression, anxiety and grief related after the sudden death of my youngest brother. I was diagnosed with fibromyalgia eventually in 2009. But recently my health has detoriated and I was finally referred to rheumetoligy. Now that I have a diagnosis I am looking at what lies ahead and to be honest I've been terrified. Thank you all so much for helping realise that I can still look forward to a bright(ish) future with my family and not worry about becoming a burden. I particularly like your ABC approach and will definitely be giving it a try.

dreamdaisy

How very frustrating for you, I remember when I began my then GP dismissed my concern about my ever-increasing left knee as nothing to worry about. In 2000 I made an appointment to see the physios at my local footy club (my reasoning being that it anyone knew about knees they would) and it was them who referred me to orthopaedics. I saw them in the January of 2001, who referred me to rheumatology. I saw them in the summer of that year and their choice of action was to refer me back to orthopaedics. Twerps.

An auto-immune arthritis can be very hard to diagnose and although GPs are improving in their very basic knowledge of a complex condition there are many who still do not know enough. GPs know a little about a lot but we need people who know a lot about a little. DD