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
michelle65680 Guest
Posted
I find as people know you as you were they dont understand the pain and as you say the little things in life that we cant do. I was on the MTX tabs but i suffered sickness and nosebleeds so they stopped them and gave me a secound steriod injection until the injection form was able to work into my system.. im on my 4 week of injection and the sickness has subsided but i really am struggling emotionally. I hide alot from my partner as i feel like im always feeling unwell. I appear to manage 4 days 12/14 hour shifts but my 4 rest days im litrally recovering. Im 50 yrs old and wonder if the job i am doing is not for a female of my age or is it my situation with this disease?
I now know exactley when it will be cold or rain is due.....I just dont want to go anywhere or do anything or make plans. Im to be marrying my partner in the caribbean next may and yes im excited but im also worried about my pain and my state of mind...I have not been asked to take prednessolone yet but this was mentioned at my last RA app..Im on MTX injection which has some really awful side effects, my hair is coming out and looking really thin and i have gained some weight, my skin is not glowing and this all make me feel so down about my looks. I do exsersise but also have a very manual job. Im unsure of Roactimera and its side effects? I was so pleased to join this site as its really handy for info...Also helps that other get how you feel....
I do hope your situation improves for you.. Im also shocked that this is an incurable disease and yet we have to pay for perscriptions?
from a Trying to posative Michelle in Essex....
elspeth97587 michelle65680
Posted
Hi Michelle. Just a quick comment - have to seen Occ Health to see if you are able to apply for ill health retirement - not sure if you have worked in NHS long enough? I worked in the NHS for 33 yrs as a nurse and Health Visitor. I was heading for dismissal if I had't applied for early retirement as I also suffered from long periods of depression. The other thing was I got a pre-payment certificate for my prescriptions as I am taking 6 items every month.
I am having Methotrexate and Roactemra injs every week. Roactemra only started about 7 weeks ago as Etanercept stopped working.
?I really admire you working 14 hr shifts as I was exhausted after 9 hrs.
?I feel you should do what's right for you and remember your partner loves you so try not to be too down - has any medical professional suggested you may be depressed and may need medication for it? I hope you feel brighter in the future.
Best wishes, Elspeth
Guest michelle65680
Posted
Hi michelle65680,
Nice to see a fast response to my discussion , well where can i start..? , yes it is hard, and emotionally i get upset about the change in my body, the steroids have done me no favours i have gained so much weight and cloths don't fit any more, so a new wardrobe has taken place. It seems i am not the only one that has sufferd mentally , but as the time goes by the medication dose work and once your body has /is responding to the right treatment then reductions in the steroids will take place, however in my case because of the pnemonia i was taken off the RA meds and had the steroids increased from 0.5 mgs up to 30mgs over night so i was very ill with this massive increase . The Methetraxate made my skin feel very greasy and spotty , and my pee bright yellow, in the begining i was also on Hydroclorequine made me so ill they took me of it after a week. Anyway i am trying to make you feel a little better...lol...sorry, but you will get there, i have had to give up work on advice from my specialist and my GP, i was a chef for 35 years, and it would be immposible to do that sort of work now , with all the long hours involed, and if i do recover well enough i really don't know what i would do, as cooking is the only thing i know.
If you find work to much your GP and specialist will help you in providing eveidence for the DWP or Job center showing you can not work, it is up to you if you think you can work then carry on, providing you take things easy.
After a while you will get benefits and help, one payment i cannot recieve yet is PIP, as i have not been in the country for more then 2 years....can you believe that.....? anyway that is all very political and i don't want to go there.
I have had all the help i am entitled to and i have moved back with my mother , so i am in a good position at the moment, and want for nothing, so life is a good as my self and my medication will allow.
Try not to get so down, you are alive and you have people to talk to, you are also lucky you have a good job and can get outand about , but like i said take things easy.
Hear any time Andrew.
michelle65680 elspeth97587
Posted
Im on my 4th week injection and feel crap to be honest.. lack of sleep and sweats in the night but im of that age for a woman and wonder if this plays a part too.. My blood pressure is always high and now i appear to have very dark tarry stools. I have had pains discomfort in my stomoche too. I do find the shifts hard as if on a day shift have to be up by 3/4 to take pain killers to be able to move better.. Just feel like this is all making me worse in my well being. My partner is fantastic and helps me with anything, I am very lucky he is so understanding but i dont tell him all as feel like im always unwell...i have a metalic taste in my mouth and this week had 2 mouth ulcers. If i do cut my self it bleeds loads.
I think i will book to see my doctor as just dont want to do anything or plan anything on my 4 days off but then im am truly shatterered and need to rest. thanks for your reply...sometimes on this site its good to let off some steam....
Michelle
michelle65680 Guest
Posted
I have just been awarded PIP which will help if i need time off and also for item i need to buy for my help at home. I love my job and work in a 2man crew. My crew mate is a younge male and he is brilliant with taking charge of heavy lifts and also if i cant drive. I cant beleive you are not intitled to PIP....keep at that....
Im going to seek advice from either the RA team or my doctor to see if they can help.. just feel so low at times..but this site helps me so much.Thank you all...
Michelle
Guest michelle65680
Posted
Your welcome,
i am happy for you that you love your job, that is a good crutch, with the right medication you will manage it so life will be bareable , andyour job will be a lot easier. As for the PIP, in March i willhave been back in the UK 2 years so i will recieve it noworries.
We all at times feel low, but don't let that get you down too much ..ok.
Here to help.
Andrew.
frances85589 Guest
Posted
Sorry to hear of your struggles.I was fit and working as a cook and walked about 16 mile a week then diagnosed with Fibromyalgia plus RA so had to give up work.Am on 10 mg prednisolone and sulfazsaline and Pregabalin and Hydroxychlorine. I have tried 3 biologics and they didn't work and after third I started tripping up and then struggling to walk as my tripping went to jerky walking n involuntary movements. I diagnosed with Antiphosphilipid syndrome so on warfarin for life . It's not just the pain is it it's the fatigue and feeling less of a person
I hate having to rely on others but I am in wheelchair now.I just want to be independent and feeling young again.These diseases just age you and take away the life you had.
Guest frances85589
Posted
Wow so sorry to hear you story,i too was a chef of 35 years and now under the advice of my specialist and GP i no longer work.
Yes i can now say that i am not the only one that feels te same as you , the fatigue is the one thing that gets me down , as well as not being able to do the things we used to take for granted. You are on a lot of meds and you have not stated when you was diagnosed ...? i also was on all the above , but they made me so ill i was taken off them , so now i only take prednisolne , and warfrine , as now i am on this new bio injection it seems to be doing me good.....fingers crossed.
I also take other things that are in place to compate any side effect from the others.
As for your other ailments i know nothing about , but i will do a bit of research later to get my self up to speed with you.
Please keep your chin up and do not get to down, time is a great healer, and i am sure the people that you have around you give you all the support you need , and they would not be there for you if they did not want to be.
I and many others understand your pains and emotions , but i and other are here to chat with.
Andrew.
frances85589 Guest
Posted
I was diagnosed with Fibromyalgia 2011 just after my dear Mum died.then got took in hospital 2012 and told I had RA too. methotrexate was damaging my liver.
My walking n jerky movements came Feb 2015 and diagnosed the Antiphosphilipid syndrome in brain July last year and then all those problems went but Aug this year I collapsed in waiting room in colonoscopy dept and spent month in hospital cos on 4th day my body reverted back to bad jerky walking n involuntary movements. I see top neurologist at Sheffield on Tuesday and hope he can help. He is my last resort.Hate being in wheelchair.
God aren't we a right bunch..lol
ihavenonickname frances85589
Posted
I hear your frustration...is the antiphospholipid syndrome thrombotic or hemorrhagic?
It is quite typical for a person with antiphospholipid syndrome to also have an associated rheumatic disease...it seems like you were hit with so much as once without a chance to catch your breath.
I hope the neurologist will quickly sort out the jerking movements. I also have myasthenia gravis which I am delighted to advise you has nothing to do with involuntary movement.
I see my power wheelchair a bit differently....it has wheels, so I go. It is when we have no means of mobility that we become invalids. Yes, many say that it is nicer to run here and run there. Me, I am grateful that I never have to stand in line hopping from foot to foot, and I comfortably wear the shoes that all of the other ladies complain about. Did I mention that my new chair is an elevating one...no more feeling short for me! Choose black with purple hubcaps.
I will be thinking of you on Tuesday. Don't allow your body to get you down.
hugs
frances85589 ihavenonickname
Posted
Thankyou for your reply.No I have never had strokes or blood clots so it's unusual to be diagnosed but heard others have. My anti coagulant bloods were very high and he said it was in small brain.I went a year being fine after being on warfarin but then being in hospital after collapsing in colonoscopy waiting room, days later I reverted back to problems again.
I see my scooter as a pain as I am so frustrated with accessibility with it and having RA it just kills my hands even thou it's just lever you hold down or up.It only gets me out when with husband as I have to rely on him to go with me. Isolation is terrible and so lonely so these forums are great for chatting to people.You sound so positive which is good
ihavenonickname frances85589
Posted
Ugh! a scooter is awful with rheumatoid...our shoulders and our elbows can not be depended upon to extend and squeezing a handle is something rheumatoid hands should avoid. No wonder you see it as a pain!
My new power wheelchair is the Permobil Corpus 3G rear wheel drive. It has been built for my arms and my hands....maybe I should write my lousy arms and even lousier hands...lol
I do hope you fox trot again but in the meantime perhaps you can find a mobility device that doesn't wear you out. It should make life easier. Perhaps a second hand one. I know you must also be mindful of vehicular travel.
I am fortunate. I never learned what bowling, skiing, hiking, biking etc were about because I was 11 when I developed juvenile rheumatoid arthritis. I have never experienced the sense of loss because you can't lose what you never had.
Perhaps your husband can extend the scooter handles towards your lap...I am thinking wood, perhaps PVC...so that you can operate that scooter from a comfortable position. If you will share enough info about it that I can ask Dr.Google, haha, I will see what I can configure for you.
Rheumatoid is all about adapting, all about saving energy so that you can use that energy to do something else. Example, laundry...as I make laundry, I put colored items into the washer and whites into the laundry basket...so much easier to sort as you go. I fold items and leave them piled up on the machine tops...and each time I pass by the laundry on the way to somewhere else I pick up that pile and take it with me. Give up the idea of a laundry day....
I think you are doing quite well. Only a survivor finds a way out of loneliness.
Ilovemypitt Guest
Posted
I also just posted the same thing. Was active. Did a lot of things. Then this hit me hard. First swelling then the pain. My fingers were always half opened. If I tried to straighten them the pain was horrible. It does help to know others are on here and helpful
Best wishes
Debbie
Guest Ilovemypitt
Posted
Yes you are not alone , i too had 2 middle fingers on my left hand totally curled in to my palm , and was impossible to open and the pain you can not tell others how painful RA is.
You also have not told me how long you have had RA so ican not give advice on any meds you are on , or anything else you would like to disscuss .
We are all here to help each other on living with this terrible dicease.
Andrew.
Gloria814 Guest
Posted
Andrew, I am sorry to hear of your terrible struggles and how it came on so quickly and aggressively. I am glad you feel like the medication is starting to put you on the right road. Your RA team sounds very helpful and supportive
It is not easy coping with this situation that's for sure. I had to give up 3x week aerobics and long walks and being out and about all day. But I started water aerobics and may try yoga and short walks. Not the same but we have to try and do the best we can in dealing with all the issues.
I talked to my doctor and we decided I should try a medication for depression. It has helped a great deal. I was very anxious and not sleeping well at all but that has improved with the new medication. So one day at a time is what I try and deal with. You will find support here and some helpful advice from others who are dealing with RA. Wishing you the very best
Guest Gloria814
Posted
The team at the QE Birmingham are very helpfuland supportive , and Dr Filer is the best in his field also being the head lecturer for RA.
I do get out and about as best i can,however fatigue is the battle , and i end up returning home afte about an hour or so, even a shower in the morning can be a mission some times.
Anyway upward and onward is the way forward althogh you have not told me how long you have had RA i am sure with the right treatment you willhave a better way of life, if i can help you with advice of any kind please feel free to write again.
Andrew.