Hello!

[Gillyflower70]

Hello! Good to share with people who really know what arthritis feels like! At times it can feel invisible and associated fatigue makes us feel pathetic. I’m a glass half full person and after over 30 years of RA and family support I’ve learnt many tricks to keep on going. However advancing age and osteoarthritis have combined to knock me back a bit in recent times.

Post covid the world seems to be getting back to ‘normal’ but I feel I’ve slowed right down. My pain levels are not as bad as many people’s but they and fatigue restrict what in my head I’d like to be doing! ( inside I’m still 18 despite a 1951 dob!) I have good health provision but feel that really the options to make things better are running low. I attend an excellent NHS centre of excellence and am grateful that despite the NHS being overwhelmed they still treat me well. I try to help myself as much as possible. Exercise, diet, battling the weight etc etc I would be really interested to know what others have found helps to reduce pain, manage fatigue and keep them functioning as Mums, Grandparents, Wives and human beings!

[Downtime]

I totally get this. I’m the same. I haven’t had RA for as long as you have but it’s definitely ramped up . I think I’ve probably now got ( undiagnosed) fibromyalgia too and lots of osteoarthritis . I’ve always travelled and been very physically active but now I’ve just lost all that and my confidence has dipped. I can’t really offer any answers. I just take the drugs and keep going. I make a huge effort to seem normal but my goodness it’s hard at times. I know people look at me they think there’s nothing wrong .because I do look quite healthy and robust! They can’t understand why I’ve given up playing golf and hiking and think I’m making a fuss about not much. Well, walk a mile in our shoes….. if only.

[Gillyflower70 in reply to Downtime]

Yup!- in a nutshell! I hope you do have support. I am very fortunate to have those who do understand and it makes a big difference . I am sure having your positive attitude does help but I do understand and sympathise, as will many on this site.

[tyncwmmarchhywel]

you have it in a nut shell,fatigue I think is the hardest thing to deal with.

[Mmrr]

I just try to keep going and note a small achievement each day, no matter how small. Yesterday I walked to my car with my partner, whilst he checked my tyre pressure. I also allow myself lots of 'soulfish' time, and try to keep in touch with people ....often online...but meet at least one friend each week F2F for a coffee / lunch.

[Hidden]

Morning. I have Fibromyalgia as well as RA, and for me it made the fatigue quite ridiculous. I started taking Amitriptyline 20mg at 7pm a few years ago, and now sleep much better (sound asleep), and this has made a huge impact. I have also taken ill-health retirement, and sorted out my finances (DWP & pensions). Finally, after 10 years in, I started to feel ‘ok’. Weirdly, not ‘having’ to do anything for 2 years may have helped (Covid), though my confidence took a huge knock. This year I am going away every month. This has helped me feel more like my ‘old’ self. I think confidence does take a nose dive. Small steps x Also, get some counselling if you haven’t already; this is life-changing stuff.

[Gillyflower70 in reply to Hidden]

I also found the compulsory slowing down Covid brought had positive effects on my life. A surprising benefit out of a horrible situation! I am finding it hard to ‘let go’ again now.

Like you I found Amitriptyline a game changer. Stops me lying awake for hours!

[oldtimer2]

I have found that my fatigue is much improved since I've been on adalumimab and the inflammation in my joints has come under control. That has happened despite not sleeping well due to problems with my back following a fall in December. It's a different type of fatgue i think when you have inflammation - a sort of general feeling that your body is too tired to do things, unlike wanting to go sleep and not being able to!

[Gillyflower70 in reply to oldtimer2]

Very glad biologics worked for you. Sadly they didn’t for me. Fully appreciate the problems post a fall. Amitriptyline, as with another post, has helped my sleep significantly. I was very reluctant to try it as in the past it appeared to do very little.However I now find it does help me sleep more effectively rather than lying awake for hours. Unfortunately I still wake up feeling tired- I accept it is the nature of the beast!

For those kindly suggesting I ask for tests for other conditions my very efficient doctors have already done this. .

[katieoxo60]

Hello Gillyflower70, I think many of us with arthritis and other illness have had to accept a change of life due to virus ect, however chronic illness does slow people down. Like yourself I was quite active till dec 2018 when my knee flared . Lack of exercise and confinement for virus risk does not help our arthritis mobility or pain and often causes weight increase. So now its time to rebuild our activity including stamina. I like you feel my fatigue is much worse but not sure if its the new tablets for BP. My Gp says they are running out of options to keep me any fitter so guess we have to accept some reduction in activities. I have had arthritis and and other illness since following a hysterectomy in 1990. But it is sad we loose our abilities and suddenly move from being independent to becoming dependent. Enjoy the rest of your day.

[Gillyflower70 in reply to katieoxo60]

Thank you for your kind thoughts.

[Amnesiac3637]

You and I have already had a conversation about denervation and it’s interesting to note we are almost the same age - I’m hitting 70 this September, and with more or less the same outlook. I’ve had RA for 33 years, been on every drug ever invented and have battled through all the ups and downs this horrible condition throws at us but I do feel now that I’m not doing quite as well as I’ve always tried to do.

Maybe it’s age creeping up, though as you say, in our heads we’re still 18 (😄), it’s certainly something to do with having had covid early this year as I’m not as sharp since and the fatigue has clobbered me and it’s also the feeling that the support is ebbing due to lack of GP resources and staffing at the rheumatology department. I too have had excellent help from my team - can’t fault the support over the years - but now I feel I can’t keep shouting help as soon as I need it and trying to discuss anything with my GP takes weeks.

Nevertheless, I’ve found the only way to cope is with a positive attitude and my mantra has always been ‘brace up, get a grip, get on with it’. In terms of coping I always say it’s what you can do, not what you can’t. I can’t play badminton (and haven’t been able to for years) but I can walk, I can’t do gardening for hours on end but I can still do it in stages, I’ve got lots of friends and see them regularly and I try never to moan about how I’m feeling as I think people have no idea how you’re feeling anyway! I’ve learned (slowly) to ask for help when I really can’t manage but if I can do it I do.

As part of my home improvement plan I divorced my husband and although I’m on my own I’ve got very used to being my own woman. Also, being retired is very much less stressful than trying to work and run a house so managing pain and fatigue is a lot less burdensome. Not everyone is in the same situation, obviously, but positivity, shouting when you need help and enjoying the good things that happen are the way I keep going. It’ll be interesting to hear what others think!

[Gillyflower70 in reply to Amnesiac3637]

I think we are on the same page and share a sense of humour! Amazing how ever tough it is that humour can ( most of the time!) get you over the hill. I am extremely fortunate in the family/husband I have- not the same for everyone, I know. Your ‘housekeeping’ made me smile and I am so sorry you had to but also admire your ability to see the wood for the trees - and crack on. Helping ourselves and not moaning about our lot is such an important state of mind. Like you I find it extremely hard to ask for help but I am learning when it is really necessary. A bit like the infamous ‘pace yourself’ advice. Sensible but really hard to do!

[Amnesiac3637 in reply to Gillyflower70]

😃👍

[medway-lady]

I don't want to sound unsympathetic but I just think get on with life and live every day doing the best that we can. If you think RA is bad try kidney failure, the exhaustion that brings knocks RA into a cocked hat. But we have to get on with doing as much as we can because we won't die of RA just with it. I'd also suggest that not all the fatigue may be down to RA and perhaps it would be a good idea to get a blood test to check for Thyroid issues. It is so easy to forget that we also get other conditions. Before the CKD and I've had RA for many years it was very well controlled and life was normal, I walked up Snowden, danced, rambled and life was great. Now with CKD I've made some adjustments but it is still good, I'll never walk up Snowden again nor see the Great Wall of China but I can still appreciate my granddaughter; and walk regularly not the miles I did before but still to the local shops or a few laps of Bluewater if its raining. So my message is concentrate on what you can do and do things gradually but above all make sure its not something else and don't assume all ills are down to RA. So never give in and never give up ; discuss the fatigue with your medical professionals it may well be down to RA but better to be sure.

[Hidden in reply to medway-lady]

Everyone is affected differently. I think your comments are inappropriate.

[medway-lady in reply to Hidden]

I think you have failed to read my post fully and put your own spin on my comments. Please reread.

[Gillyflower70 in reply to medway-lady]

I understand where you are coming from and of course many of us have multiple conditions. I’m so sorry to hear about yours and wish you well.

[medway-lady in reply to Gillyflower70]

I think its really difficult sometimes to see beyond the today aspect of any disease, but its vital to make sure all is down to RA. I have RA and thyroid failure and thats been for many years I put the fatigue down to RA for a good while then through a routine blood test my thyroid function despite taking thyroxine for years had taken a nose dive. Upped the thyroxine and fatigue gone. Its such a simple thing but worth getting checked as if you haven't had yours checked it does go hand in hand with RA. My CKD was down to a medical injury and with a function go 8 I could not stand up in the shower nor walk around the dining room table but gradually things improved and whilst its taken time (3 years) it'll never be back to normal but its ok. I try to do what I can and that was my message do what you can and enjoy what you have. I'm also going to have a platinum anniversary soon and refuse to grow old anything less than disgracefully with good humour and wearing jeans. Stay strong RA is a blip in life's plan and does not define anyone. We are all different but one truth is that good medications for the huge majority of people (not all) do enable us to live a long and fulfilled life with minor inconvenience. Best wishes.

[Gillyflower70 in reply to medway-lady]

Wearing jeans as I type!!.-and agree with the positive spin! Enjoy your platinum with pride!!

[medway-lady in reply to Gillyflower70]

I'm going too ! I like Landsend ones (other makes are available) as they always seem to fit around the top better, and they can be washed and not ironed as much as M&S. I'm in denial about age and am glad my husband unlike my friends did not buy me a personalised number plate when turning 60. She'd been telling everyone for years she was 55 but was 2 years above me at school. She suddenly got fed up of the car and sold it with its number plate. I've never struggled so much to stop laughing and I said to my husband "stick to garden stuff! ". I hasten to add she did see the funny side of it too. I think you'll be fine just stay in the jeans and t-shirts and enjoy life. I'm just thinking a glass half full is a lot better than one half empty. But of course there might be more gin in the bottle ? xx

[Gillyflower70 in reply to medway-lady]

Absolutely!! Must look at Landsend again!😉