A long road

Bones, joints and muscles
1

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

2

wow.. hello and welcome Andrew....this was all so quick for you...how do you cope emtionally? I myself had been suffering for 3 years..doctor kept saying carpal tunnel, which i have had surgry on both hands at the same time due to many years of hairdressing/ braiding,,, I was finaly diagnosed in July this year..I am holding down my job as an Ambulance crew..its proving difficult as the shift patterns and strength needed....Im not coping with the emotional side and fatigue really has got me..I feel for you as this was all so quick and from somebody who was so sporty and fit im shocked.. was this stress that bought it on so aggressively?

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....

3

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

4

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.

5

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.

6

Dear fraces85589,

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.

7

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

8

Hi

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

9

Hi Elspeth.. thanks for the info.. I work for a private ambulance service so probally wont be able to apply for ill health.. My company have been brilliant as you may know at times we have to have time off but as im on a 4 on 4 off rota i dont actually have time off, i can work all my blood tests and apps around my rota. I think I may be depressed and may well ask my doctor about this. I do use the pre-payment cert but still think as this is an incurable disease we should be exempt....

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

10

Thanks for your reply Andew,

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

11

  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

12

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.

13

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 fatigued But 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

14

Hello Ben,

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 .

15

Hello Gloria, Thank you for your kind words, we are all here to help eachother i am sure of that, and yes it has been very emotional for me being such an active person and all.

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.

16

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?

17

Hello Debbie,

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.

18

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.

19

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.

20

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