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Rank: Advanced Member  Groups: Registered
Joined: 4/16/2011 Posts: 36 Location: Northumberland
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Hi all, I have been a member for a few weeks, but this is the first time I have posted. I have found lots of threads extremely useful already, thanks to all the support from members. I was diagnosed on April 1st (my 48th birthday!) after a blood test showed high CCP and rheu factor, it didnt mean a lot to me at the time, of course it does now. I got an appt really fast with consultant (2 weeks) and given scans etc along with a depo and joint injection as the pain was pretty debilitating in my right wrist (I use a mouse all day at work which doesnt help). He said I was a candidate for Mx so I felt really positive about getting treated early, as guidelines suggest. He also wanted me to have a nurse specialist appt in 2 weeks. However, despite the injection in the joint working fantastically well, the other side of my wrist is 100x worse than the previous pain. It goes all the way up my arm and feels like I am being stabbed constantly in my whole arm, pain is unbelievable. I cant even turn a tap on with my right hand at the moment.  I have shoulder and back pain that wasnt there before. I sometimes think it is psychosymptomatic! I have pain relief in the form of OTC brufen, paracetamol and luckily I have been on codeine for a previous shoulder injury, but I am finding I need more and more of these tablets just to get a small amount of relief. It is so frustrating. The pain, as you all know, is crushing me completely. My family are pretty supportive (23, 22 and 21 - all live away with partners and have a 2 year old grandson, baby boy due in june and baby girl due in july) but they do not understand the pain at all. My husband tries his best and sympathises and does the right things in terms of increasing his house work load (that would be from zero to some lol) but I still dont think he realises just how debilitating it is. I am trying to get my head around it all to be honest. I have read a lot, so understand RA a lot better, but the future scares me. I work in office type job so my hands are used a lot for keyboard/mouse in a full time position. I am scared I will end up having to stop a job I love because of the pain. The fact that I have no further follow up and seem unable to contact anyone on any of the numbers I have. The consultant sed. doesnt even have an answer machine. I just dont know where to turn at the moment, desperate to start some proper treatment to avoid any more damage, but I dont want to become a pushy pain in the butt patient, if you know what I mean. I have enjoyed reading the letters here and find it so comforting that there is such a place to come and talk/share and moan with others in the same position as myself. I look forward to meeting you all eventually. Petti xx
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Rank: Advanced Member
Groups: Registered
Joined: 2/7/2011
Posts: 66
Location: London
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Hi Petti
Be pushy! If you don't ask you won't get - so keep phoning. It sounds to me that you also need to give yourself a break and rest more until you get the disease more under control, and to help you with the pain. As well as drugs try icepacks and warm wheat bags. But chances are that that you will get it under control soon and you will be able to get back to a normal'ish life - so do try not to let it grind you down completely. RA is £$@%, but not the end of everything. When I look back to when I was first diagnosed and compare to how I am now the difference is great. I could hardly get out of bed, and now can do most things even if some are a bit slow. It took a few months for things to start to take effect and I'm still not stable, but the trend is definitely in the right direction. If you don't get a response from numbers you have then try PALS (Patient liaison). Polly
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hi Petti - you can ask for a workplace assessment by Access to Work. They will come to see you in your work and interview you about your regular tasks then make reccommendations which your empoyer is obliged to put in place. For example, a wrist support and adapted mouse, customised chair, adjusting placement of your equipment so it is exactly right for you, foot rest etc. These will help in small ways but the overall effect might be that you get through the day with less pain and fatigue.
Whilst you are getting your meds established it really is worth talking to your GP about pain relief. I have a selection! Some days I will know that ordinary co-cos or paracetamol will work. Other days I need prescription co-cos, tramacet or tramadol to get pain under control and manage some of the tasks I usualy do. Rest is important too. Pacing yourself is something we all have to do too.
It is still early days and you have done really well to adjust to the news (what a birthday present though!) Glad your family are being understanding as it is a lot for them to understand too. Hope you are feeling better soon. You're going to be a very busy Nanna this summer!!!
Take care, Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Petti,
Welcome to the forum! You will get lots of support and advice on here.
If you are not getting through on the numbers you have been given I would suggest the same as Polly......ring PALS .They will either give you a number to call or get someone from the rheumy dept to ring you. It is not being pushy or difficult, the consultant wanted you to see the rheumy nurse in two weeks which is now overdue.
I am 61, married with a 22year old daughter and have had RA for 10 years.
Looking forward to getting to know you and hope you can get started on treatment soon.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Petti,
welcome.
it is such a lot to get your head around when first diagnosed as well as coping with the pain.
when i was diagnosed a year ago i had dreadful pains in my shoulders which spread down my arms to my wrists. i was given a Cortisone injection in each shoulder and the pain relief was instant !!
i would definately do as the others have suggested ... you shouldn't be left to cope with so much pain.
NRAS helpine are fantastic as well and will point you in the right direction.
do come back and let us know how you get on,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hello Petti
Welcome to the forum but sorry that you have been diagnosed with RA. The first few months are the most difficult to get through. Not only are you having to cope with pain, but you also need to get your head around the fact that you have been diagnosed. Your life will change but with good medication, and adjustment to your life style, you can still carry on working and have a social life.
I was diagnosed two years ago at the age of 48. I work in an office and type for most of the day. Yes it can be difficult some times but I have had to change things. I now gather the strength over the weekends and evenings by lots of rest so that I am able to get through the working day. My family have had to rally around and now do all the physical things that I cannot cope with. Yes it is frustrating but if I try and do too much, then I learn a very hard lesson in the following days. I would definitely suggest a workplace assessment. Your employer is obliged to help you in the way that your assessor suggests. The most useful thing I did was give out copies of the NRAS booklet for employers to my relevant management because until they see it in black and white, they will not understand what you are going through. My employers have been brilliant. I work full time for five days a week and they now let me work at home for two day's a week and have supplied a computer, computer lines and everything else to allow me to continue my job as if I was in the office.
I would also suggest that your leave some copies of the NRAS booklets lying around at home for your family to read.
The most important thing I can say to you is that you must take charge of this disease. You must keep pestering doctors, hospitals and anyone else involved in your care. After all it is you that is going to have to put up with joint damage not them if you do not get this under control. You have started what may be a long road on medication. Your first step is the Methotrexate. This could take up to twelve weeks before you see improvement or you may be one of the lucky ones where it helps you straight away. After two years I have been on Methotrexate, tried two anti-tnf types of injections which unfortunately did not work for me but have now been put forward for biologic infusions. Although my joints are not getting much better, after two years I am mentally prepared to cope with this disease. I went through a period of mourning for my old life but then realised that life can carry on and it is what you make it.
I have learnt so much from this forum and gained support from some wonderful members. Keep posting and ask whatever you want. What may seem silly to you will ring true with someone else who can offer advice and guidance.
Take care
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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 Hi Petti Welcome to the forum. You have made a great decision to join us. Everyone on here is very sympathetic and can offer great advice because we all have the same illness. It is very hard when first diagnosed and it is difficult to get your head round everything that is happening but although you will have bad days, when your meds are sorted you will be much better. There are ups and downs in this illness but when you are down come on the forum and have a good moan, cry, whatever you want. No-one judges, we have all been there and talking to people who understand makes you feel better Good luck with your medication and do post again. Love Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Petti,
Welcome to the forum where you can get all the friendly advice and support you're going to need. I'm Sara 45 married, no kids, our choice so all good there, live in Cornwall and was diagnosed in November. Been on 15mg of MTX since and they say its working, all my bloods say that everything's under control but it doesn't feel like it some days!
You're not imagining anything, I also feel such a fraud sometimes but when you get what I call the scream out loud pain what else can you do but scream out loud?! Also pester, pester. The NHS do their very best on the whole but its a massive unwieldy organisation which is inherently dysfunctional because of that, its nobody's fault but you have the most important vested interested in all this, nobody else is quite as bothered.
Good luck
Sara
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Petti,
Welcome too from me.. Im Ceri 43 and diagnosed 2 years ago still not 'under control' I dont think anyone realises the extent that RA affects your life, my husband is great and tries his best but still doesnt understand that I dont feel well enough to go out like we used to and I would rather stay at home, anyway its great that youve started posting and push to get the treatment you deserve. Look forward to getting to know you.
Love Ceri x
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Rank: Advanced Member Groups: Registered
Joined: 4/16/2011 Posts: 36 Location: Northumberland
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Thank you all so much for introductions and such sound advice. I had my grandson yesterday and am suffering today because of it. I do need to stop picking him up but it is so hard when he holds his arms up to his gamma...you will all understand that I am sure. I do need to pace myself much better than I am doing. Even if I achieve just 1 task a day it is progress. I try to do too much and know I just suffer the next day. Thank you for the fantastic advice about work assessments. We are supposed to have these but I have yet to be offered one!! It is time to be pushy for this, I dont want to lose my job or start hating it because I associate it with pain. I will get this moving on monday. They are good with appointments though, changing my shifts etc, especially as I have appointments through with little notice at the moment, they do know I have RA but I dont think they understand the extent of the pain I am in at times. I certainly couldnt get through the full 8 hours without painkillers. It is so lovely to get replies from people who understand the pain. I accept the diagnosis, realise I need to make changes, but the pain and severity is something that has shocked me most of all. I never understood this before it arrived. You think pain is always copable, but scream out loud pain is new to me, and the sheer constant exhaustion of trying to carry on as normal. I have enjoyed reading all of your lovely responses, I feel warmly welcomed by you all. Thank you for taking the time and trouble to talk with me. I have a GP appt on tuesday morning, which is a medication review of tablets I am on for diabetes (see, that doesnt worry me nearly as much as it is well controlled!) I need to discuss my pain therapy urgently. I am currently taking 90mg codeine 3 times a day to keep me fairly mobile but I have a feeling he will criticise this. I was prescribed it 2 years ago for a painful shoulder, looking back I have a feeling that it was the start of RA, it has never improved much and came out of the blue. Its amazing how nervous I am at asking for higher levels of pain relief, I feel like a drug addict. Reading letters and forums I am quite relieved that the amounts of analgesia are taken, it makes me feel a little more justified and pain relief at the moment is my main priority to get on with reasonable normality. I will keep you all posted. Have a lovely week one and all. xxx 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Petti, A big welcome to the forum - it`s a really good place to come. I know exactly how you feel about picking up your grandson, as I was diagnosed on the day of my first grandson`s 1st birthday. For the next 18 months I couldn`t pick him up, which was soul-destroying. By the time my second grandson came along, things had improved greatly, so lifting him wasn`t a problem. Once your RA is better-controlled things will improve. I`m Kathleen, aged 60, and I live in Durham, so not so very far from you. I was wondering which hospital you attend, since you really could do with the support of a rheumy team, so that you have access to help in times of flares etc. I have 3 different painkillers, in varying strengths, depending on the level of pain. I was tried - and failed - on various DMARDs and combinations of DMARDs, and for the last 3 years have been on humira, which is a biologic. This has greatly improved my quality of life. Do keep posting, Kathleen C x
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Petti, I am Lorna, I was 48 when I was diagnosed, I was really severe in the beginning but I am now well controlled having been on the triple therapy. It is very hard to get your head around things but you will. You will also have good days as well as bad, find ways to make things easy for yourself. Being positive will help, although it's hard try to remain so. Glad you have found us on the forum, we all know exactly what you are going through. The hardest bit about RA is the pain, it's excruciating but you look really well, eventually it does wear you down. Keep posting and try to keep your chin up Lorna x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Petti,
Welcome to the Forum but sorry you have RA. I am Rose from Somerset aged 57 diagnosed late 2008
but still not under control unfortunate for me. Failed DMARDS x 3 and due to start humira shortly.
I am married to Mike and 2 grown up children and 1 grand daughter. They try and understand how I
feel, but still not relaly grasping the fatigue type of tiredness, I find this is dreadful and I never learn
(because we want to be normal ) .
I had Access to Work involved on a return to work after a long sickness period. They were great.
I was granted a chair, key board and mouse, writing instruments chair plus bits. great. They come to
visit you within the work place they they write a report to your Employers, and they part pay them
towards the costs of the relevant 'bits'. Brilliant
Keep posting nice to meet me
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
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Hi Petti, Welcome to the forum. I can't give much more advice really apart from what others have given. You have come to the right place though for support and friendship and people who understand.
I am 53 and have had ra for 15 years, have been married to Mike for twenty five years and have two grown up children aged 19 and 22. I have been on methotrexate for eight years and it has largely worked for me.
Bevxx
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Rank: Advanced Member Groups: Registered
Joined: 4/16/2011 Posts: 36 Location: Northumberland
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Thanks all, I am looking into a work assessment because I think it would really help. Unfortunately my GP has put me on sick leave for the rest of this week as I am in so much pain. He was great this morning and doing his absolute best for me in terms of pain and chasing up the appointment for the rheumy nurse. He has started me on tramadol today to help and told me to rest, hence the sicknote. I have had 3 doses of the tramadol so far today, pain still bad but I do feel a bit high lol!! Does this painkiller take a while to get into your system??
Pet x
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
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Hi Petti, big welcome andhope by now your pain is at least subsiding. Im Heather 48 (today!!) and dx nearly 2 years ago. Like yourself I was totally confused and didnt know where to go or who to speak to. this forum is great as there is always someone here who will know how you are feeling because with the best will in the world, our partners, family etc unless they have experienced the pain that RA can give, its hard to totally understand.
Not too sure about tramadol,, I cant take it as it renders me totally useless (no change there then I can hear my family shout) I tend to take co-codamol for pain especially at night. Do you have a rheummy help line attached to your rheummy department at your local hospital? Also, if you ring the NRAS office they will be able to get someone from NRAS who has RA themselves to give you a ring to answer queries etc etc. I did this and found it really helpful as at first my head was spinning from all the information etc.
With regards to your workplace, I have been given a special chair and also a rollerball mouse which has been an absolute godsend, might be worth a mention.
Hope things get easier for you soon!!
lots of love
Heather xxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hi Petti Just picking up on your point about the Tramadol. Yes it does take a while for your brain receptors to get used to it. I was started on Tramadol last year but did not take it regularly and the times I did take it I found I could put my head down on my desk and go to sleep. Not good. In January I had a knee replacement done and they pumped me so full of morphine that I can now take the Tramadol no problem. When I spoke to my GP about this he said I should have persevered with the Tramadol more last year and taken it regularly and then my system would have got used to it. My system is now so used to it that it is not working as well  so I think it is time for another chat with my GP. To carry on working you need painkillers. I know some people say you should not rely on them because the joint damage is still happening and you may not be aware of it but needs must when you have to work. Take care Jackie xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 312
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Hello Petti, Sorry to hear you have the dreaded R.A as we all do! I hope that your pain level is getting better. I am Fiona and have had R.A for about 16 years now, since I was 38. I take Hydroxychloriquine. I am now 54 years old and have three grown up kids, 34, 33 and 31 and a 10 year old Grand daughter. I don't work, thank goodness, so at least I can take things easy during the bad times. I was told by my R.A nurse years ago not to panic during flare-ups, which I tended to do and she explained they can last days, weeks or longer but will go again. I have found this to be true up to now. (My problem was that I tended to start to think that my drug was no longer working, during flares, but that would have been wrong I have found.) I find stress makes me worse and the calmer I feel the less the R.A rears it's head! Best wishes to you, Fiona
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Petti, welcome to the forum. I am Barbara, married with four kids, youngest one is 18 today. I was diagnosed almost two years ago. Its very hard in the early days, especially re working. You think you can carry on as usual, but of course thats not happening!! You have had some brilliant advice, and when on the right treatment things will get easier, take care BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 4/16/2011 Posts: 36 Location: Northumberland
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Hi all. After taking the tramadol for 2 days now I am feeling relief. Not pain free but comfortable enough to feel less grumpy! I just wanted to cry constantly last week it was so painful. I think I just have to realise that I need hefty doses of painkillers to be able to live relatively normal now. I just wish the consultant would start my treatment. He said I am going on mxt but my appointment isnt until 6 june. Its going to be late summer before it kicks in if I follow the normal reaction. Its so frustrating. I went into the hospital site and there wasnt any feedback on my hospital, but I added my 10 pence worth and it hasnt come out very well compared to other local hospitals. I havent been given access to OT, specialist nurse, etc etc. Can you change hospitals though? Hope you all have a lovely day 
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