Just to sat Hello

Veemo

Hi, I've just been directed to this website, so thought I'd say 'Hi' and bore you with my story. I was diagnosed with rheumatoid arthritis February 2020 after a few months of wondering what was happening to me.

After almost 70 years of being fit and healthy (apart from a creaky knee!) , feeling young for my age and going for brisk 3 mile walks with my dog I was in agony. My hands and legs were swollen beyond all measure, I'd just sit and shake for no reason, I'd fall asleep at the drop of a hat, everything throbbed and hurt, I spent many hours sat on the stairs crying as I didn't know how to get up them and nights were pure hell! Also lost one and half stone in a month.

Luckily my GP took blood tests and within less than a month I was seen by rheumatology , told I was anaemic and that my inflammation levels were almost off the scale, given a steroid injection (which didn't work, unfortunately) and started on methotrexate. To add to my misery I also had the beginning of osteoarthritis in my hip!

I will admit I was not in a good place - I realise now that the RA was causing me to be depressed and feeling VERY sorry for myself. Then along came lockdown ! My 30 year old daughter still lived at home - and she had recently been diagnosed with Crohns disease and was suffering from depression and anxiety - we were a happy pair. Husband is not good at the sympathy and support and with daughter needing support, too, I felt very lost - I could have done with a supportive cuddle now and again!

Methotrexate started to work by about May and things started to perk up a bit. Daughter got treated for her depression and when first lock down finished she managed to get a flat with her boyfriend, (which did lift some of the stress in the house - although I still miss her company.). At first everything seemed to be going well, regular blood tests and phone calls with rheumatology kept me on track with the RA.

My MSK appointments were all cancelled, but I had a couple of phone consultations - basically telling me to do exercises. For a few months I started to walk a bit farther, but then about November my hip started to get worse and I can hardly walk without a stick now. I use two sticks to walk the dog - (which I can only manage once a day ) which is awkward as it doesn't leave me a hand to hold a lead and I have an idiot dog! Twisting and turning in a smallish kitchen when cooking is agony and exhausts me for hours after - don't know if this is osteo or ra related! Nights are still hell and my hip sounds like two billiard balls clicking together - as for getting going after sitting, well that's not good.

At long last I have REAL appointment with MSK tomorrow - and found out about this forum/community from the letter. I was sent. Must admit I'm a bit apprehensive about tomorrow. I've tried to do the exercises suggested, but sometimes it's hard without any moral support (I mentioned husband's useless, bless him!) It would be nice to know if other people have weepy days and feel sorry for themselves, too - and then feel bad about it as there are always people worse off! Hopefully things will be positive tomorrow, anyway. Wish me luck .

jeddison1985

Hi @Veemo firstly a warm welcome to the forum.

I am really sorry to hear about the struggles you have been having over the last year with a combination of Rheumatoid Arthritis, Osteoarthritis of the hip and the struggles of lockdown adding to all of this. I want to reassure you that you are not alone in feeling down about your condition and many arthritis patients experience similar things with some proven links between the range of conditions and mental health.

It sounds like you have been through a rollercoaster of things both physically and mentally over the last year and it is therefore no wonder you have been feeling down.

It is a really positive step that you have taken to join the forum and share your story, I am sure that many people will be able to resonate, empathize and share their experiences with you. Finding people going through the same thing and widening your support bubble can help both physically and mentally with a long term health condition.

The site and forum is home to a whole library of information which I would encourage you to explore, but firstly I thought I would point you to some useful general information below:

1) Information relating to Rheumatoid Arthritis which highlights what the condition is, the symptoms, the causes, the treatments and general wellbeing tips.

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

2) Information relating to Osteoarthritis and the condition.

https://www.versusarthritis.org/about-arthritis/conditions/osteoarthritis/

3) Specific information for Osteoarthritis of the hip.

https://www.versusarthritis.org/about-arthritis/conditions/osteoarthritis-oa-of-the-hip/

Finally I just wanted to say it is great news about your first face to face MSK appointment tomorrow I hope it goes well and gives you some answers and options to help with your pains.

If you have anymore questions following your appointment please add them to this forum thread and people can help guide you to the best advice.

I hope some of our lovely community are able to share their experiences with you and that you find a plan that works for you.

Good luck tomorrow!

Joe

Rina

Hi @Veemo , I think you’ve summed up a lot of our journeys through life with arthritis - good days, bad days, happy days, sad days, painful days, pain free days! The only thing I am ever sure of is that how I’m feeling physically and mentally today is not necessarily how I’m going to be feeling tomorrow! I’ve lived with RA for 40 years now and I do keep having to remember that all things pass. This thought helps me a great deal when things aren’t too good.

I hope your daughter is getting on well - worrying about our children never ends does it? And I hope your weepy/painful/bad days pass quickly!

How did you get on at your MSK appointment?

Rina

Veemo

Hi Rina,

I realise I'm lucky to have only developed RA in my 70's when other people have had to endure it for years. It comes quite hard when you've always been the strong healthy one, though - frustration isn't a strong enough word!! Today my hip is hurting like hell following manipulations at MSK appointment. I didn't realise there were so many more ways in which it could hurt!!! I'm resorting to co-codamol for a few days despite the unwanted side effects (bring on the prune juice!) The appointment went well, though - I've been referred for surgery as they didn't think the injections would help much - just delay the inevitable. I've no idea how long the waiting list is, but at least I'm on it! I intend to be extremely good and work hard at all the muscle strengthening exercises. I'm aware that I will no doubt get sidetracked and forego them somedays, but at the moment I'm full of good intentions. It doesn't always help that my idiot dog feels obliged to 'help' me when I'm trying to exercise - it's bad enough trying to lift a leg anyway without a 26 kg dog leaning on it!

Thankyou for enquiring after my daughter - as you say we never stop worrying about our children. I was a slightly older Mum - I had my sons at 34 and 35 and my daughter at 40. I think that maybe the stress of seeing her change as the depression and anxiety hit in was what triggered the RA. Then when she was diagnosed with Crohns it was awful - because of her mood swings it was hard to comfort or support her always. I also felt bad as it comes from my side of the family - I have a cousin who has had it for over 50 years and my Mum had ulcerative colitis. Luckily my daughter had a lovely doctor who has helped her tremendously with her depression and moving in with her boyfriend and getting a new job has all helped. It was difficult when the RA was at it's worse, though ,as she was so involved in her own problems that she wasn't very supportive - in fact it appears she told her brothers at one time that she thought I was just doing it for attention!! But other times she was great and I just hope all keeps going well with her. We now compare good days and bad days via e-mail!! Miss her loads - when in a good mood she kept me young!

Sorry for the waffling - it's just nice to talk to different people at the moment! We live in the country, so don't see a lot of different people - and I was a born chatterbox. Hope you have more good days than bad days and take care.