Newbie

Hi , I am new to this site, to be perfectly honest I have been reading several threads on here for several months now but have not posted anything because some of the posts and experiences on here although honest have frightened the life out of me. I am a 45yr old female that was diagnosed with RA last November and I feel gutted!!!!. Is there life after having RA. All alone without any emotional support from friends or family. Basically dealing with everything alone, no support groups in my area and I get sick and tired of having to tell people what's up with me just because they cannot visibly see it. I feel so alone and isolated and feel what have I done to deserve all of this and I am still grieving for my old way of life. My mind wants to do things but my body just gives out on me . I feel so depressed and I feel nobody understands. II even feel let down by my consultant whom seems to think that Methotrexate is some bloody miracle cure that I refuse to take because I live alone and fear I could not cope with any adverse effects it may have on me and the toxins put in my body.

I desperately want to work but on some days I feel so wiped out I think to myself how on earth can I stick a full time job when I feel so fatigued and I haven't even done anything. The whole thing is just getting me down. My life feels like that film groundhog day, Sorry for being pessimistic guys but is there any light at the end of the tunnel. Just being left to my own devices, don't see my consultant for another 6mths now and I am on hydroxychlorquine whuich they feel is working and I keep having to top up with diclofenic just so that I can function. Excuse the french guy's but I feel sooooooooooooo pissed off with it all.I have not been offered anything, no podiastrist or rheumy nurse and i have only had 4 hospital appointments. i feel it's a joke and I am seeing my GP tomorrow to make a complaint. As I feel that I should be monioed more closely as I feel they still haven't fully got my disease under control as of yet.

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  • Your way of life sadly does change,but there are ways round it. My motto is i won't let the bugger beat me. I have different colours in my hair and i paint my nails five different cxolours as well. Its my way of cocking a snoop at ra. Yes it is very hard as people can't see whats wrong with us. Don't despair about mtx because it does work,the only side effects you would probally get is the sickness,but don't quote me on that,as i have never had any side effects with mtx. I am now waiting to go on cimzia as i am getting a lot of pain.

    Now pick yourself up and dust yourself down and say sod it to ra. There are a lot of things you can do when you have got your ra stablised. Now i am going to send you a sylvi hug .xxx

  • Cheers hun, I really apprecate that, does it really work, I hate sickness as I have a real phobia of being sick. I just want my life back again and to feel in control once more and be the fun loving person I once use to be.xxx

  • Hi Cougar, sorry to read that you're feeling down and can completely understand how you feel, been there myself!!! It's sometimes not so easy to pull yourself together and get on with is it especially if you feel that noone understands you including your medical team. Good for you though going to your GP tomorrow about making a complaint, it might just be enough for you to get it all of your chest and they might actually take some notice! Good luck and I hope you feel brighter soon. Ang xx

  • Hi there, please don't feel too frightened as RA is very variable and it's early days for you so things should get miles better. I think this site isn't completely representative and has more people with difficult RA so gives the impression that that's what it's like for most people. I'm one of the luckier ones, with an RA that is reasonably well controlled so I now have most of my normal life back, and I do think that happens to the majority of people but they don't post much on here. But it took nearly a year after diagnosis to get stable and I'm now on 3 different drugs. I take Hydroxy, but also Methotrexate and Sulphasalazine - and I really don't have bad side effects any more. Hydroxy alone just really wouldn't do it for me. I know MTX sounds scary, but so is having your life totally messed up by uncontrolled RA. And most people don't get bad side effects so really do think about trying something other than Hydroxy or as well as. And if they do make you feel bad you can always stop taking them! It is a tough road coming to terms with this disease, but don't despair as it can be ok. Do also talk to your GP about how you're feeling, as maybe you could get a bit of emotional support too. good luck. Polly

  • Thank you so much for that encouragement. I so desperately want to go back to work again as that was my lively hood and without it I feel so isolated as it was a big part of my life and I soo want to feel normal again. I attended my appt at the hospital but didn't get to see my usual consultant but a registrar instead who seemed to think what I as on was working but I know different and I felt like she wasn't listening , excuse the french but I am petrified of taking meth and I am absolutely petrified of needles and missed having my bloods taken for hosp appointment, thats how scared I am. Having to endure all of this alone without any moral support. They just said if I have any problems just to ring the rheumy dept and I don't get to see my consultant again until October. I just get so pissed off with the fatigued and I have difficulty with my mobility as have joint destruction in my metarsial joint as I already have some joint destruction and now it is going into my left ankle.Sorry, I really hate sounding so pessimistic as it so not me xx

  • hi welcome to the group ,, if i say things will get better ,, youll probably not believe me ,, but it will ,, im sure of it .. coming to terms with it can take time ,, even more so , when your having to deal with it on your own .. i totally understand that feeling ... dealing with it ,, is difficult enough ,, but when on your own it lifts it that bit higher .. well youve now found friends who do understand .. sylvi is right ,, dont give up .. fight the blooming RA dont let it beat you ..

  • I sodding well will, as deep down I am not a quitter and I use to work in a Citizens Advice Bureau and was alway's fighting for others.but this is the hardest thing I have have ever had to endure and especially doing it alone has been so hard!!! and especially without any support. being through the grieving stuff as to why me and what have I done to deserve this.Had the pain but refused hospital treatment cos I hate hospitals as I was with an ex who had cancer and bless him he use to come home and tell me all about the nasty things they had done to him. just sitting waiting to go in and see my consultant leaves me feeling anxoius and I am like a horse who just want's to bolt and get the hell out of there as I have a real phobia.

  • This might help you to think again about MTX? rawarrior.com/methotrexate-...

    She points out that we need all the ammunition we can get to help fight RA - and MTX is a first class piece of ammunition.

    I am not needle phobic but have plenty of other issues that this disease has forced me to address or overcome. Be brave - side effects that would make you vulnerable if on your own re the MTX are rare - it's not an opiate or anything so it doesn't send you off your head. I've had some side effects that have turned out to be more about the RA than about the MTX - it's generally a well tolerated drug and you do need to weigh up whether the pain and exhaustion you are presently putting up with are less scary than the monitoring blood tests.

    If you are on MTX you will be well looked after by your team because they have to when you immune system is being suppressed. I was diagnosed a whole year before you and only see a rheumy every 6 to 8 months so only twice since diagnosis and I have no rheumy nurse either. But you can manage this disease to a large yourself if you are prepared to face your demons and use disease modifying drugs that are being suggested. Are you taking anything at all for your RA just now? This site is fantastic and NRAS has a really good helpline too. Tilda x

  • Thank you, I might give the meth a shot now but I don't wan't to experience any hair loss as I already suffer with hair loss which is genetic , female pattern baldness, coudn't hack that as my hair is my pride and joy and being a female of course,lol.x

  • I have had complete alopecia twice in my life and was really worried about MTX too - but my hair is still my pride and joy and still plenty of it - even more so since it went a bit snowy white with Hydroxichloraquine or age or both!

  • Hi, really sorry to hear you're so down, I think the advice to give methotrexate a go is a good idea, it really helps some people, me included - although in combination with other things. There are so many more treatments now then when I was first diagnosed, it just takes a while to find what works , I remember having to jump through so many hoops to get humira which did really get me down. I sometimes think that consultants etc lose touch with the fact that we have to live with this every day, not just the 5 minute consult every 6 or so months. My hospital has a rheum. Nurse specialist which makes a huge difference now. I hope things improve for you soon .RA is such a s.h.i.t :-/

  • Yes , I agree is is a total shit, my consultant says I can't have anything else yet until I have tried the meth, truth is my Mum has COPD and has nearly died and although I appreciate that the meds they give her are keeping her alive but in one respect are toxic and slowly killing her if that makes sense. And I wish I could find a more natural way rather than havig to pump toxins into my body and face a slippery down hill slope like my Mother has all the while these drug company's make billions, hope that makes sense and I am in no way trying to be difficult or awkward just so anti drugs.

  • Know how you feel on this also and sorry about your mum. I think it's harder for us also because the drugs that make us feel well again come with added pressures as in the side effects. I think they way you're feeling is perfectly natural you're a human being after all and didn't ask to be given RA. I hated the thought of taking the drugs..still do! Really hope you get on ok with your GP tomorrow, not going to patronise you or be bossy but tell them exactly how you're feeling and your anxiety about taking the MTX. Think also about giving them a try I'm sure everyone on here will support you through it and if you don't get on with them at least you can say you tried :). Best wishes xx

  • Thank you so much, I am so glad I finally plucked up the courage to post on here, not one single person has judged me or made me feel indifferent and I am grateful for that. Yes your right we are human and it is a worrying thought having to take highly toxic drugs as an alternative without ever knowing the long term effecs other than to relieve the horrible symptoms of RA, it sucks really.xx

  • Hi there, I have a rheumy nurse but they haven't still referred me to her let alone anything else, seeeing my Gp tomorrow to have a gripe because I don't go back to the hosp now until October and I think it is appalling especially since I was ony officially diagnosed last November.

  • welcome a lot of people do very well on mtx x

  • Hi! I am a Newbie on here too (nearly a week old!) and can definitely relate to being alone with the onset of RA. It isn't easy and there's so much information to take in. I read loads and only remembered the scare stories/side effects etc. Assessments and questions and yes, needles...all alien and anxiety inducing. Ive had RA for a year and Im now functioning much better. What I would say about RA is they introduce it gradually and build it up. I got some headaches...like a hangover for a few hours...I have to say (touch wood) it is working for me. I think of rainbows when the needle goes in! You do get used to the needles quite quickly or at least I did. The rainbows work! Good luck with your hurdles, one at a time and hey, CAB needs people like you! Great work! Last thing, I write lots of my experences down at night - It helps me chew through it all. Good, bad and indifferent. Ive even started to blog...Take care, stay +ve and jump them one at a time. I hope your GP helps. :D Cal

  • It should read that Ive been on Methotrexate for 9 months and it was introduced gradually and built up over 2 months...I hate fatigue, it makes me sloppy lol!!

  • You've had this evening lots of support and encouragement, I'm sure this will continue...you're not alone now :).If you would like a cyber "buddy" to chat to and support you...I'm sure you would help me to!!!...please message me anytime. Ange xx

  • I know you have had some great advice on here already, i just would like to say hello and welcome, I was also diagnosed only last year and it is very frighting, but since finding this site it has helped me so much, i am on MTX and Hydroxy at the moment, but the MTX isn't working that well for me, but that doesn't happen to everyone, So take Care and there is always someone here to chat to XXX

  • Hi there lovely. Sorry you feeling so rough. Wonderful folk on here who are always ready to listen, your not alone. Sending gentle hugs. Love Janet xxx

  • Hi there please don't feel so alone this site is great lots of nice people on heretofore help you

    Gentle hugs Karen x

  • Hi Cougar, sorry to hear you're feeling so bad at the moment. I think most of us can identify with that time of feeling lost in the face of something bewildering and seemingly unbeatable, with so much new information and advice to take in. Partly this is the emotional effect of being given a huge unasked for challenge, but it is also a physical effect of the disease itself too. Because it's a systemic disease it is flooding your body with its chemical reactions, and this makes you feel low. It's akin to having flu all the time.

    Many of us on methotrexate will have felt very apprehensive about taking it. The list of side effects is terrifying, and the fact that you need to have all these tests beforehand only makes it seem worse. But the reason it's the first line drug for treating RA is because it works so well for so many people. Because of it I am able to keep on riding horses, digging my garden, walking my dog - this year's plan is to start cycling again, and possibly to start riding competitively again. (Or maybe I'll do that in 2014!) I have no side effects apart possibly from fatigue but that may be attributable to the disease anyway.

    I hope your GP can give you some more support. One of the things my GP arranged for me was counselling which really helped me to talk through my anxieties about dealing with the disease and about work, and about dealing with chronic disease alone. That made a significant difference to me. Rheumatology appointments do seem to be very widely spaced once you're out of the first three months, and it can make you feel very unsupported. Meanwhile, keep blogging and sharing your worries and asking questions because that too will help you get your head round it. It took me a good year to understand it fully and get my head round what it meant for me.

    Good luck,

    Dotty xxx

  • Hiya, caught up with your blog late, but gosh , I don't think there's any thing more I can add to all this great info above.

    Well it's me so yes I can say more!!!! If you haven't already go onto the NRAS main website, nras.org and you wil find loads of information including a whole section on being diagnosed. I think with RA patience is a virtue as it all seems to go slowly, from seeing your doc to seeing a Rheumy can take ages and when you are in pain , it's just so hard, but tell your GP how you are feeling.

    Also the best thing I got when I first got sick was the NRAS helpline, it's on the main page above. They are friendly, supportive and will listen and it's like you have a really good friend at the other end of the line. You can just chat, or tell them everything, they are great and obviously confidential, and it stopped me feeling so alone. So give it a try!

    Great to have you on here

    Axx

  • Hi I'm in the early stages too as had my illness 5 years but not taken any medications yet as like you I have a mum that has had loads of problems due to side effects. Still , the medications have kept her alive and she is now 85. I'm seeing my Gp this Saturday for a final diagnosis and I'm scared but since joining here I feel more confident that I can fight this illness . I have bad days and good days and I'm learning to live with them accordingly. You are not alone now here you will find people that understand what you are feeling as they have felt like you. There are wonderful caring people here and now you have found them you are not alone any more. We are on this journey together lets help each other! Best of luck with yr Gp . I'm scared too of taking the meds but if Gp gives them to me this Sat ill try them as they have helped many here. Lets share notes how we get on ok? I'll cyberly hold your hand . I wrote a blog about celebrities with RA and it comes out that there are many and they manage to cope and still do great things . Be inspired by them!

  • Hello there,

    just adding my welcome to the many you've had already. RA is isolating & frightening but it doesn't win all the time, there are ways round things. I just want it to go away but the next best thing is learning to cope & adapt. Two years on and I'm still spending a lot of time thinking about it all & trying to get my head round it. Sometimes posts here from people who have had RA for many years are very interesting ...... often there's a real calmness that gives me hope.

    I agree with you that you could do with more support from the NHS. It really is a case of 'if you don't ask you don't get' with this disease. Quite a few times I've steeled myself to get antsy or make a complaint only to find that simply requesting something obvious brings results! I've got the hang of this now: 'I'd like my hands & feet x-rayed, please', 'Can I see a physiotherapist?' 'How about x drug?' the answer is usually 'Yes'!

    So glad you have found this site.

    Luce x

  • Awww hun, i felt the same way as you do, you somehow have to come to terms with RA and just do ur best. There are days when i feel so down but i cant/wont let it beat me. I too found out last year i had RA i am 42 and i went from a full time job and very active person to no job now and struggle to take kids to the park. This is a great site to air ur problems out on and to 'vent' out if you feel like screaming. x

  • Someone I recently spoke to on the NRAS helpline told me that 50% of the calls they receive are about the drugs and worries re side effects etc. I don't think anyone should judge us about our decision to take them or not to - including medical professionals. When I first came on this site a few years ago there was a feeling amongst some of the long standing RAers that people who turned their backs on drugs were like traitors. I hated this attitude and left for a while because of it. Now things are very happily non-judgemental here and it's a great blessing because I share your ambivalence about the drugs we are encouraged to take 100%. I think it's harder for those who get RA as a slow and stealthy disease to sign up to take these drugs whereas those who wake up one day unable to move for pain are usually pretty eager to try anything that doctors offer in order to feel better - and that's understandable too.

    So you really aren't alone in your worries - my parents both died relatively young of heart failure - but having had very full and productive lives. I think longevity is overrated if it means you are going to be in lots of pain or feel terrible from drug side effects. I would rather live a shorter life that is full of joy and good health than a long one full of suffering and illness - whether from RA or from drugs. I think this is the hardest thing we face with our disease actually and consultants who make us feel irresponsible for our reluctance should imagine how they would feel if in our shoes. But that said - the RA Warrior in me says fight RA not the people who are trying to help us - and so the RArollercoaster ride carries on!! Tilda xx

  • Hi just wanted to say welcome.

    Everyone has already gave you lots of good advice.

    Most of the times when we blog or ask questions is when there is something wrong with us so don't let reading some of the things on this site put you off as I am sure we all have good times as well, I know I do.

    RA is a horrible disease but with the correct meds you can do well on it.

    I am on MTX, Sulpha and Hydroxy and I am still working full time. I have had RA for 5 years.

    You have to fight the disease, I know sometimes in the past I could have just sat down and cried and said why me, but you need to keep strong and you will always have someone to speak to here on this site.

    Look after yourself

    Mary x

  • Hello. Poor you - so much to cope with at once.

    I'd like to say that I too hesitated to take MTX, having just managed to recover from harsh chemo drugs, but took advice from my consultant and added MTX to sulfasalazine. My blood test results have always been fine & I have had very few side effects (occasional headaches). My blood tests are down to 4 x year and the disease is well controlled.

    I think you should take your time, ask questions, gather info. but also listen.

    I'm sure you would be in a better place if you could tackle that feeling of isolation. We all need people around to offer support & understanding.

    I hope you find the strength to fight this disease and to enjoy life again.

    Good luck x

  • Hi guy's many thanks for the welcomes and kind comments and offers of support. Quite frankly this is the first time where I have felt I can be myself without being judged or being told as I was by my GP earlier that I am being negative. I need to rant and I had to stop myself from getting up and wanting to thump her one. She is on a different planet and I said to her welcome to my world and the real one at that which quite frankly is not cushioned by a luxury lifestyle with the wages she is on. I have gone from being fit and healthy bringing home a modest income each month and being financially independent to now surviving on a hundred pound a week and low rate care and mobility for DLA. I won't go on ESA because I will be worse of finacially as I would lose my disability premium and she seems to think a sick note will do the trick without the devastatng affects that Atos has had on many sick and disabled people. I said when she has the time go on You Tube and look up the Michael Mears and the MP's enquiry that was held in the house of commons a while ago about the astrocity and appalling system of Atos and thier assessments for ESA. And because of it I find I am in a no win situation.

    Least not forgetting we are currently in the admist of a very bad recession and I have to face the prospect of finding a willing employer who would be willing to take on someone with this condition when there are so many fit and healthy candiates also looking for work. Then I told her about the severe isolation I was facing and how much it was getting me down only for her to respond with that there are lots of people who go home to no-one. And I said do they all have RA as well. Then I was told to get out more, yeah right, you need money to do that and by the time I have paid out all my household bills and bought food I hardly have anything left for things like that. What planet is she on and how dare she insult me in that way.

    Personally I feel that I have done well considering I have already had two job interviews this year and have one tomorrow. I had to battle with Social Services for nearly a year without any support from anyone just to get support in the home and I have accepted that I have RA and adapted but what she fails to recognise is that I have to face a future of uncertainty and have been thrust into poverty and now have to rely on the state through no fault of my own and if anyone on here has been down that route would know just how unreliable that you constantly live in fear of your benefit being stopped or taken away as this Government is hard on intent as wanting to get many people of the sick as possible and couldn't care about the likes of people like us she hasn't got a poxy clue, sorry for the terminology. Sorry for the long thread, rant over,lol. xx

  • Hope all goes well at the interview ;-)

    Wishing you lots of luck and a calming relaxing rest of evening and a good night's sleep!

    Julie x

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