A long road
Posted , 10 users are following.
Hello group,
I am new to Patient and it has been nice to find somwhere where i can now tell my story and chat with others and exchange thoughts and views on my RA.
Back in 2015 i was a fit and healthy 53 year old , cycling around 200 kilometers a week, and going to the gym at least 3 times a week , and holding down a full time job to boot, living in the Algarve , Portugal life could not be any better for me.
After returning home from a full filled holiday in Asia, i was ready to start back at the gym and take a long rest before my seasonal work starting again in March. All that changed in February when i noticed i was having diffeculty in standing and my ands started to swell and becoming very painful. My local doctor thought i had Maleiria as the symptoms are simular, i never got to see him again as my symptoms got worse and my whole body was racked with pain, mother came over to see me and realised it was something a more serious.
Having returned back to the UK in a wheel chair in absolute agony eating paracetamol by the hand full i ended up in the QE hospital where i was diagnosed with agressive RA, so bad that my specialist Dr Andrew Filer said he had never seen before.
I am now 55 (will be in February) and after having pulmanary embolism's in both lungs, pnuemonia this year and a string of medication (the usual RA medication) i am now on 2mgs of Prednesolone , and Roactimera(an injection once a week) i am now some what on the right road, i still have pain attack's and some of my joints get hot and painfull but only for short periods at a time.
I am still finding it hard to accept my condition and i really struggle with the fatigue, i find it so frustrating that simple things that we take for granted are so much effort, showering, tieing shoe laces, walking,standing for to long , just doing the normal things.
It is a long road, as i was told by Dr Filer, but with his help and the help of the team at the RA clinic at the QE hospital in Birmingham i am a lot better than i was and i have a little bit more to go.
Please feel free to comment or ask me anything we are all here to help each other and exchange ways in wich we can improve our way of life.
I look foward to hearing from any of you.............Andrew..x
0 likes, 40 replies
ben52877 Guest
Posted
Hi Andrew, sorry to hear your story. It sucks with you being so active before. I know the feeling I'm 26 was to I had RA about 5 months ago although I had signs I now realise I had it probe since I was 20 I guess I was into my fitness big into my lifting was planning on doing a comp next year that's out the window now!!! My main issue is my knee my elbows and fingers a bit but my knee is doing my head so much fluid they can't settle it. I've been on sulfasalazine for 15 weeks I very just done a month of predisalone tapering off and both have done nothing apart from upset my stomach . I've just done my first methotrexate last week which made so sick. See what happens this week
I think what many people have touched on with the mental side is nearly as important as the medication I'm so upset as I can't train like I did I have so much muscle wastage already around knee I use to eat so much food to maintain my muscle mass and it was so clean I have a lady who makes my food to fit my macros now I really don't want to eat which make things worse. I'm trying to apply the it could be worse so much worse but sometimes you can't do that when it changes your life so much especially someone like me who is 26 and lived such a healthy lifestyle and takes care of everything that goes in my body but I suppose that is life and I am trying to change my mind set that I have had 26 years of doing what I want when some people on this forum like Judith (ihavenonickname) has had such a a bad deal from a even younger age, and we have a lot more help with the drugs these days and places like this where people can give there personal experience with RA so we can learn. Stay strong bro Ben.
Ilovemypitt ben52877
Posted
Ben
I also had a little selfish tantrum also on here and like you I felt bad complaining But you can't help saying why me. I started having RA last April. Was shocked at diagnosis I'm 55 just got. Arrows for second Tom 4 years ago. Looking forward to future. Making plans and wondering what things will. W like then. I also was active my job entailed a lot of lifting and heavy work on feet all day. We used to have a boat. I was the one to climb in the boat get everything ready to launch it or take out. I think I could never do any of that now. And I don't want to be fatiguedBut I guess that's what I've been dealt. It's great we have this kind of forum to express our feelings and not be judged and everyone understands
Debbie
Guest ben52877
Posted
You are so youngto get this, but i know of a girl at the clinic that has RA too, so it does not discriminate .
That was one of the biggest and diffecult thibgs for me to get over, was the fast rate of muscle wastage it was scary along with the weight loss.
As for the stomach upsets do you take folic acid..? this should take away the stomach upsets as i used to have them on Methetraxate and Hydrocloriquin (now stopped) and yes i too have lost my apittite i only eat 3 times a day now , and never eat inbetween now i eat as needed.
But as you say like my self and every body else it is the emotional side that people do not understand, the fatigue, the feeling of being useless, difficulty in doing the most simple of tasks, you have along way to go and there is light at the end of the tunnel , and you will get better, not cure , but life will be managed after the right treatment has been established for you.
Stay strong , dont get to down , you are not on your own
Ask me anything anytime .
ben52877 Guest
Posted
Yes I take folic acid my stomach has been a issue they think it's to do with the RA which they are doing more tests for. my diet has no dairy no gluten and I only eats fish and eggs as animal products I use to Base my diet on 3750 calories which is what I used to maintain my weight of 110kg my weight has dropped I don't know how much as I don't want to look I can see me legs wasting away around my right knee mainly I have had so many knee draining and steroid injections which did nothing for the pain or anything but they still tried again even though I told them they could give me enough for a rhino it doesn't work in my body.
The most frustrating part for me is I can't find a pattern of flare ups which I will post a question later. I could be resting and I get swelling then I move a bit and gets slightly better or the other way around I keep a diary of what's going on but there is no pattern so I can even help manage it. It will be my second methotrexate does age of 10mg on Saturday I'm going up to 20mg over coming weeks so hopefully It will kick in. Do you still do much exercise as it was such a big part of your life it's hard to cope without it I imagine?
Guest ben52877
Posted
Hi Ben,
I am afraid to tell you there is no set patten for the flare ups, they comeand go at their own will, the best thing is rest. I have 6/7 cushions on the sofa and about the same on my bed, so as dsoon as i get a flare up i try to possition them so it is comfortable enough untill the pain killers kick in, Paracetamol are the only ones i take, anything else makes me bad.
As for my fitness well i have days where i am feeling so good that i thnk "ok this is the day to jointhe gym", then the very nex day i am in a heap of some kind , with painful knees, or hands , hips...or where ever it chooses to be. Although i am only 5',9 iwas 90k working on 100, with a calorie intake of 5000. it had taken me 2 years to get to where i was with a 44' chest , 22' biscep ' 32' waist and 25' thighs........all gone now , and now i wiegh 100k but it aint muscle....so now you can imagine how i feel.
But i remain possitive i i will get back tothe gym, but i am sure i will have totake it real easy , and not to lift like i used to (bench 55k) not bad for an 53 year old.
Stick with the meds, if one or the other are making you really poorly then tell your specialist he will take you off them and try something else.
It is the fatigue that i have a problem with it does my head in , that is the only real problem i have , obviously the pain too,but i have brute determination and i will get there.
Any time Andrew.
ben52877 Guest
Posted
Yeah the feeling that you can't do what you could sucks. You sound like a strong positive person with determination that's the mind set I'm trying to get into as soon as my medication starts to work I have plans I'm going to get into strength and conditioning coaching in spare time from work so I am still in the same atmosphere of that kind of gym as it's one of the places that makes me happy and gives me a focus so I think being involved in it even though I'm not doing the lifting is a good idea. I haven't had to much fatigue yet I'm glad to say I just don't sleep as much since being on medication which is annoying but that will sort it's self out.
Do you have any experience with muscle stimulators as I been doing some research and have used them with physio to activated the muscle that are not switching on around my inflamed joints? I do a lot of stretching and foam rolling and it's as if all my muscle in thigh don't switch on and contract since I've had such bad flare ups?
Thanks for your time and responses
Guest ben52877
Posted
Ben just take it step at a time other wise you will do more damage, and take longer to heal.
ben52877 Guest
Posted
Yeah your right Andrew time is key I know I need to be more patient for things to settle down everyone tells me that and I am slowing down and thinking more. nice speaking to you tonight I'm sure we'll will speak again soon. Thanks for your time.
Guest ben52877
Posted
Good night .
ben52877 Guest
Posted
I wish I didn't have to get up but I still have to get up at 5 for work but luckily I'm in charge of the yards so I don't have to do any lifting and my boss is understanding like today I'm in a lot of pain so I went I told them what to do and I'm now back in bed!!!
Guest ben52877
Posted
tony09890 Guest
Posted
I’ve been an extremely active person my entire life, my wife recently told me she thought I was hyperactive. My pursuits of bodybuilding, weightlifting, canoeing, sailing, cycling, bushwalking kept me extremely fit so after my retirement from the services in 2000 at age 49 I continued as before albeit with much less gusto and devoted more time to my lifetime obsession with designing and constructing things in my workshop.
When in the service, I had the nickname of Steroid because everyone thought the power and strength I had was only possible with steroids (no, I never used them), I had a range of party tricks that I performed on demand such as crucifix and lallane pushups, I could still do these tricks well into my 60s until RA hit. Now my arms have withered to such an extent I have no strength, I need my wife to open jars for me, to tie my shoelaces, help me shower and believe it or not she actually helps in my workshop now.
I must admit suicide is constantly in my thoughts, only the thought of leaving my wife stops me. On occasion, I find myself in tears, I no longer have the gusto for life I once had, I can do pretty well nothing now except watch TV or tap on the keyboard and even that with some difficulty now. This is not how I wanted to live out my life. Hopefully the Rheumatologist will stumble across something to relieve my pain although he has said due to the damage I will probably need surgical intervention.
Life is wonderful, isn’t it? But this is my life now, and I simply have to accept that what once was can never be again!
Guest tony09890
Posted
So sorry to read your story, but what concerns me is the thoughts you have of suicide ....this is not the answer and a man who has done so much in the past truly has pasion and true grit, yes it takes time but i now have bio meds which now have my RA under control with no pain, only the odd flare up now and again,and i still have problems, and fatigue.
It is degrading sometimes and losing ones dignity is lowering, but once you have conquerd the pain you can start to do things again alittle at a time at your own pace, there is no rush, you do not have to rush to get up for work, so not sleeping is not a big concern, just relaxe and listen to your body....i know its hard at times and it is a long road , but you will get there.
We are all here to help each other through these tough times.
Andrew.
tony09890 Guest
Posted
A bit of advice: Do not entertain prednisone! If you think you have pain now, try tapering prednisone, chalk and cheese. And it really does wonders for your skin! Don't touch.
ihavenonickname Guest
Posted
You specifically wrote,
quote
it has been nice to find somewhere where i can now tell my story...and exchange thoughts and views on my RA. unquote
Two years, two itsy bitsy teeny tiny years and you are now an authority, and oh yes, an inspiration. Really...You have no clue of what it is truly like to live despite having rheumatoid.
"the usual RA medication"! You know nothing about the development of medical treatment real rheumatoid suffers endured for so many decades. You know nothing about the adverse side effects so many died from in the name of RA treatment. If it had not been for their suffering, for their lives, you could not have been treated so very well today.
Where were you when we had our bone marrow suppressed? And about the six emergency blood transfusions given just to survive the night, how many years did you lose sleep after hearing on the news several years later of a new, tragic, deadly disease that had tainted the very blood supply that had saved our lives.
We have many amazing, inspiring, gracious, giving, kind admirable, thankful people on this site.
You are not one of them.
tony09890 ihavenonickname
Posted
Ihavenonickname, I'm a very rude person usually, not at all easy to get along with, particularly since coming down with RA and it is very rare I take exception to someone else being rude; but, I think your post is a little uncalled for. I've only had RA since August last year, does that make me any less a sufferer of RA? Everyone has a story to tell, ours, at least on this forum, is to listen and offer support where we can.
Guest ihavenonickname
Posted
You have sufferd a lot, and i am sorry you feelthe way you do,maybe iknow nothing,i am not an expert i am just telling you they way it is....you do not have to read my post's.
Guest frances85589
Posted
ben52877 Guest
Posted
Hello Andrew ihavenonickname wouldn't of ment to be rude I think we all need to remember we are all in the same boat but also different ones at the same times I can't imagine having this in a time she did which would of impacted her life from the age off 11 to now when she is 65 and still having the issues and having so many things removed and replaced. She also has so much knowledge that she always is happy to share on here . I also get your side as her post could come across as harsh but as we were talking the mental side will affect everyone in a different way I have no knowledge which Is why I'm happy to speak to you and her and everyone but no matter how hard we try we will all take things personally depending on our own experience with RA. Speak soon mate
Guest ben52877
Posted
Gloria814 ihavenonickname
Posted
I don't understand why you took such a tone on your note. Perhaps you were having an extremely bad day. None of us can imagine the agony and difficulties you have had with your many years dealing with this disease. My Aunt had RA in the 50s and 60s and my most vivid memories are of her on the bed crying in pain. She took massive doses of aspirin and high dose gold injections --side effects horrific
you have a wealth of knowledge and have always been so informative in the past so I was taken aback by the harshness of your note.