Psoriatic Arthritis Newbie and struggling

Hi all. I'm 28 years old and I live in Manchester. I am still having tests to be diagnosed with psoriatic arthritis even though all the docs know that's what I have. (Also has psoriasis for as long as I can remember on my scalp). I don't know what I'm asking for, maybe just someone to make me feel like my life isn't over? I started with symptoms in April this year and have been pretty much down and depressed since. I'm affected in my knees (prominently my right knee) and my ankles (mostly my Achilles' tendons). I have 2 children (son 6 and daughter 4) and I quite literally feel like I will never come to terms with this. I struggle walking and even the school run is a struggle for me and that is only from the car to the school yard and back. I feel like I'm letting my children down. Also my partner and I were lucky enough to get a decent tax rebate and want to surprise the children and take them to Disneyland Paris next year. But I can't book it yet because all I can think is 'am I even going to be able to walk?!' Also keep thinking shall I wait till I'm started on some treatment first so I know where I am a bit better? (Currently only taking naproxen and cocodamol). Myself and my children have been through a horrendous 18 months and taking them on this holiday and seeing their faces when they find out where we are going is honestly the best thing I feel I can give them at the moment. But I just can't look forward to booking it or going as I worry how my disease will affect me. I feel very alone ( although I do have some good family support) in this and my thoughts. My mum had inflammatory arthritis (she died 10 years ago at age 39) but not 100% which type and as you can imagine she's the one person I'd love to speak to right now but I can't. I just need some friendly people. I know things won't ever be the same again but right now, as I said, I feel my life is over. I just want someone to tell me that's not the case and that I will at least be able to enjoy my holiday next year for my children's sakes if nothing else. Thankyou in advance. Helen xxx

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  • Hi Helen. Welcome to our friendly wee group.

    I had my first ever major flare at the start of 2016 (although in hindsight I realise that the problems I'd been having with my back and knees for at least 14 years before that were probably early stages of my AS that were never picked up as a type of inflammatory arthritis). When I was at the height of my flare last year, and it went on relentlessly for months on end, I remember thinking that I was just going to have to get used to living with that level of pain. I thought it would never go away. My kids were 7 and 9 at the time, and the guilt killed me because I couldn't do a lot with them.

    Fast forward to this year, and I'm in a much much better place than I was, both pain wise and emotion wise. You are in the middle of a very difficult time, where the professionals are trying to figure out exactly what is wrong with you, so they can come up with the best treatment plan. This part can take a long time. I know it's difficult but try to keep your chin up.

    Are you being seen by a rheumatologist, or is your GP trying to manage your symptoms? If not, request a referral to a rheumatologist. Maybe you could ask for a systemic steroid injection to ride you over this difficult period? It didn't work for me, but there are people on here who swear it has made a massive difference to them.

    You've made a good choice by joining this group. There is always someone available who can relate to how you're feeling. No need to keep up that cheerful "I'm fine" face on here. Take care. Mhairi

  • Thank you so so much for your reply. It's done me the world of good. Sorry should have said I FINALLY got my first referall appointment over a week ago and in the time they've sent me for more bloods, X-rays, MRI on my worst knee and have an unltrasound booked for my ankles on the 10th October so I am lucky they've been on the ball in such a small amount of time. It's just hard to see any light at the end of the tunnel when your yet to be on any treatment and who would have thought actually being diagnosed would be a bonus!! I'm the worst for googling too. I'm a serial googler!! And no matter how much I know I shouldn't I just can't help but do it in search of something positive. But your response was the best form of research for me. Thankyou so very much you have made my day. I only hope I can get in a better place soon. Yeah I keep reading about flares and think to myself "I've felt the same for months (utterly crap!!)". Also the rheumatologist said once I had all my test results back (sadly got to wait till the 10th of October for the last one to be done) they would see me in clinic and probs give me a steroid injection into my butt and discuss starting methotrexate which is a good thing to aim toward I know but I should have mentioned I have major anxiety also and so in my head I've decided they will change their minds and not give me anything. I'm my own worst enemy at times. Thanks for your support xxx

  • You're welcome. Good that you've been seen quickly. Know what you mean about it being a "bonus" to be given a diagnosis - for me I think it was because I was so desperate for some relief from that relentless debilitating pain. I had the fluid drained from my knee and a steroid injection directly into the joint. I couldn't believe the difference that made to me! I was like a new woman. We only live 2 streets away from the school, but it used to feel like a mile when I could hardly walk. Fingers crossed you get some relief soon. x

  • Thankyou Hun me too. I so can't wait to just feel a little better and more human. Being a mother is so so liberating and for me it's everything to me, so feeling like I can't be one properly is so so horrible. Hopefully get some progress soon. Xx

  • Bless you a word of advice STOP GOOGLING! πŸ˜‰ lol I am an RA sufferer also suffered from depression and anxiety for as long as I can remember. Your life is not over my love once your pain is managable you can do whatever you like just know your limits. I used to tell myself ill never be able to run for even a minute and when i finally got off my butt to try it i astounded myself! My kids have already noticed a change in my mood and commented which made me even more determined! I hope everything comes good for you hun we are all hete if u need a boost or just a rant. Good luck 😊

  • Thankyou so very much for your reply. I am defo a serial googler but recently (since things have started moving a bit toward getting that much needed diagnosis) I've not been doing it as much as I know I'm just scaring the crap outta myself and giving myself too many horror stories to read. Depression and anxiety is awful and teamed with not sleeping, how could we ever cope!! Throw in an autoimmune disease and I feel just about crazy! Ha. Thankyou again for your kind words they mean so very much xxx

  • πŸ‘β€

  • Abundant realistic hope for Psoriatic Arthritis & Psoriasis, Hels1989. 😌

    Have a look-see:

    πŸ‘ πŸ‘ . πŸ‘‰ Psoriatic Arthritis & Skin Psoriasis: Nicole S. O’Shea's Journal (& Journey): healthunlocked.com/cure-art...’sheas-journal-journey

    πŸ‘ πŸ‘ . πŸ‘‰ EarthToLor: Psoriasis, RA, Depression, Weight Gain; Triple Therapy & More; Potatoes & Rice: healthunlocked.com/nras/pos...

    .

    .

    Merely some things to consider.

    πŸ€” Your mum's early passing πŸ˜” needn't be your fate. (Especially in today's landscape of treatments/ approaches. πŸ‘ πŸ€— )

    πŸ€” And, your children will love you to bits πŸ’“ πŸ’— whether you go to Disneyland next year or not.

    .

    .

    Maybe(?) place foremost in mind πŸ™‡β€β™€οΈ , your little ones πŸ‘« want a happy, healthy mum throughout their lives β€” more than they want a holiday 🏰 . . .

    There's plenty time for holidays (down road, when you're 'predictably'(?) feeling up to it). Where you can enjoy the holiday as much as your little ones β€” without concern over ability, mobility, pain, fatigue, etc. πŸ‘ Perhaps relieve yourself of that (self-imposed? πŸ€” ) pressure to 'delight the little ones' with a wonderful surprise. πŸŽ‰

    Having you well πŸ’ƒπŸ» is what they truly wish πŸ™ for.

    You've abundant kind & loving support πŸ’•πŸ’• here to tide you over, as well as loving support at home. πŸ‘©β€β€οΈβ€πŸ‘©πŸ’‘πŸ‘¨β€β€οΈβ€πŸ‘¨ 🏑

    Take good care, Hels1989. 😌

    Wishing you the very best. πŸ™ πŸ€ 🌺 🌞

    .

    Kind regards, ☺️

    Kai

    .

  • Thankyou so very much for your kindness! It means so very much to see some lovely people on here with wonderful advice etc. Thank you for your kind words πŸ’•πŸ’•πŸ’•

  • Hello

    I have psoriatic arthritis. It's been a long old path to treatment. I had two years of agonising pain before someone would listen. However, you are already half way there! Fear not...you will feel a bit better. Stetoid shots in my back side made a huge difference in pain and stiffness. This time last year I couldn't roll over in bed!

    It does take time to find the right meds..I'm not quite there yet. However, at least I am not in agonising pain. Stetoids are used as a stop gap.

    Your depression will lift a bit with treatment. I find my depression sucks when inflammation is high.

    It's an exhausting illness, and tough when you have small kids, not least because one feels so guilty. It won't always feel so bad though.

    Just try take things slowly. Also, don't overdo things after your steroid shot. I felt so relieved to be relatively pain free that I painted the whole flat. It looked like it had been painted by a chimpanzee on speed!

  • I can't tell you how much better I feel reading things like this. Yeah right now I can't roll over at all and it's so so belittling isn't it?! Knowing I'm half way there is so so encouraging. I just keep thinking how can I this time last year decorate a full house in 2 weeks and this year I can barely walk?! How is it possible?!! And it literally started in April and has just progressed what seems so quickly! Thankyou again for your kind words. If you don't mind me asking what treatment are you on at the moment? Xx

  • Don't mind at all! I was on leflunomide until recently, however it didn't work.

    I've just had a steroid shot in my backside...helps considerably! :-) it's a stop gap until I see rheumy in December.

  • I so can't wait to get a jab in my butt they sound like life savers haha. Does it hurt? Not that I care much if it helps!!!

  • No....but I have a big butt! :-)

  • Hurts more when rheumy does it. She says it's best if she gets it right in muscle. I think she just hates me! :-)

  • Oh so do I πŸ˜‚ more cushion has to be a good thing though right? πŸ˜‚ and your rheumy sounds mean haha xxx

  • Just thought I'd let you know that the steroid works well for stiffnes and joint pain. It's not so good gor the tendonitis.

  • Ok thanks for the tip. Have you got tendinitis too? I sometimes find that worse!!xx

  • Yes, in knees, both Achilles, and all over really. Bloomin painful!

  • I struggle with my Achilles, mostly my right! What do they do to manage that?

  • Physio. Stretching exercises. Fine ehen not in a flare

  • Ah ok. I just seem in a constant flare but I'm guessing that's because I'm on no treatment yet?

  • Just slowly limped my way into a cinema screen with my partner (the first time I've been anywhere I haven't had to in months) and sat right at the front and feel like crying. How times change 😒

  • (Very welcome, dear lady. πŸ™ 😌 ) Kindly, keep your πŸ‘ on the prize πŸ† of getting as well you possibly can, Hels1989. πŸ™ The rest will sort itself out over time ⏳ . . . . πŸ™ πŸ€ 🌺 🌞 [For reflection πŸ€” :13 Bite-Size Thoughts for Autoimmuners -- Newly Diagnosed (or Not): healthunlocked.com/ra-warri... ]

  • Thankyou lovelyπŸ’•

  • Hi, your emotions at the moment are completely normal and understandable, the not knowing is in some ways the hardest part, I'm in a similar situation and can't help thinking if you know what's wrong that's half way to coping with it.

    It's tough trying to get those closest to you to understand both the physical and emotional turmoil you are in and no doubt part of that is their own denial that someone they love is not well.

    It seems your doctors are on the case and hopefully before long you will start treatment that will improve things and more importantly your outlook.

    In the small hours it can sometimes feel that the only thing keeping you company is the disease itself, but you should try and use your holiday with the kids as a positive focus, dangle the carrot for yourself that there will be light at the end of the tunnel and that this period of uncertainty will not last forever.

    Take Care.x

  • Thankyou so very much. I am kind of using the holiday as a 'treat' for when I get on treatment that is working for me and therefore I can feel happy about the treatment working and also the fact I've just booked an exciting holiday. I have to focus on that I guess. Oh yes when I wake in the middle of the night (I must wake every hour) I often feel the disease is the only thing that's there for me 100% you are so right. People can only understand to an extent. Even now I'm only just realising just what my own mum went through and wondering how she did it as a single mum. So if I didn't fully understand as her daughter how can anybody else understand me? It's so very hard and I do sometimes feel I take it out on my partner but he is so unbelievably supportive I don't quite know where I would be without him. What symptoms are you experiencing? Any particular arthritis you think you have? Xxx

  • Hi, they aren't sure if it's early RA or Lupus for me or some other inflammatory arthritis.

    Hadn't heard of lupus until the doctor said if I had to push her for a diagnosis, that's what she'd say.

    Mine started last year with what I now know as a'flare' that lasted 3 months, started in hands and then crept up to elbows and into knees....morning and night sweats etc

    The only way I can describe it is that it literally feels like my blood is crawling in my arms?!..and then even lifting the tv remote is too much effort when it's 2am and you're looking for something on the telly to distract you from it all?!

    Since then it died down for a while, finger joints have always stayed 'sticky' since but it's reared its head again in the last couple of months.

    My gut feeling after (like you-googling) is that the Lupus theory could be right, got a lot of the main symptoms which I previously didn't think were anything to do with it such as butterfly rash and raynauds since teens!

    I understand more than you know with the anxiety of what the future will be, I had only just gone self employed and at 39, thought 'what the hell?!!!'

    I've been started on hydrochloroquine and now taking the naproxen that I had previously been prescribed but wasn't taking so that I could try and understand what was going on, but I keep a diary and take photos of stuff because it helps to have that for the docs to see, especially if your appointment falls on a good day and there's not much to see?!

  • Hi I'm 36 with 3 small children I've recently been diagnosed with rhemetroid arthritis I suffer with my hands and feet and ankles it's so hard I'm still suffering daily even tho I'm on methotrexate injections and tramadol etc just gone bk to work and that's hard to I would like a holiday with the kids but also scared to plan x

  • It's so scary to plan ahead isn't it Hun. But then I keep thinking that I'm still in the same pain wherever I go and maybe a holiday is what I need. I don't know, I'm so new to this and I don't know what to suggest I'm afraid but sending you lots of love and some nice pain free days. How long did methotrexate take to start working for you? Xxx

  • Ive been on it about 6 months I feel better then I did but I'm still in absolute agony x

  • Can they not give you something else too Hun? X

  • I'm at specialist tomorrow x

  • Oh good let me know how you get on x

  • Hi Hels. If its any consolation to you your feelings sound pretty normal to me. Waiting for a proper diagnosis, in pain and with little children is a recipe for depression. A solid diagnosis will open up a whole world of treatment options and help. In finding this forum you have a host of lovely, informed and sympathetic people who know how it is. Please bear in mind that those posting here may be worried newbies like yourself and those struggling with their diseases and some who simply like to share their vast knowledge and experience. Everyone else, stabilised and well-controlled, is far too busy getting on with their busy life. Thank goodness your doctors are on the ball and have started you on the path to treatment. Wishing you all the best

    Jan

  • Thankyou very much and thankyou for pointing that out as I guess it's very easy to read all the posts and only see fear and scary stories, like you say that is just a fraction of the people living with autoimmune diseases etc and the rest are stable and don't need the support of this group quite so much I guess?

    It's also good to hear that I'm not just going crazy and that it's normal for me to be feeling this way. I keep saying I just feel in limbo, because since first seeing my gp with my symptoms I feel I've come so far with so many tests and blood tests coming out of my eye balls practically! But when I sit and think, I'm still yet to be diagnosed! So have I even moved anywhere?! That's how I keep feeling anyway but I know if I think rationally that I am further on because I'm now under a rheumy and that first initial appointment took 3 months to come around and I'm now finally past that! Thank goodness!!

    Thankyou for your kind words and support. Wishing you well too 😊 xx

  • Hi Hels, things will get better once you are taking arthritis medication for your condition and it is controlled. You will make progress and improve. Absolutely. I think many of us think at first, the way that you are .. Is this it? Will I be immobile and unable to go anywhere? There are always ways round the majority of things and I hope you soon see your consultant.

    I agree with what was said that you see more posts here when people are new to arthritis or changing meds or having flares etc., but that is when people are looking for advice on general day to day issues on how to cope, and to read people's experiences. What happens to one doesn't happen to all.

    A systemic steroid injection in the bottom could help a lot so ask your consultant if you can have. I'm not sure about the ones to specific joints before you have any scans on them etc., as that would alter the inflammation they want to look at, but certainly you could ask if have your knees injected to tide you over AFTER your scans until an arthritis med is prescribed and kicks in working. Of course they won't leave you without any medication. They've already arranged scans etc.. They are on your side and want to treat it quickly. The steroid shots have been wonderful for me and got me moving when I was at a total standstill.

    Remember that everyone is very different .. What works for one might not for another. What happens to one of us doesn't always happen to another. I agree It's scary indeed when you know your life seems in such a state of flux that you think there isn't hope. Well there is and you will feel less anxious as time goes on. I would bet my house on that!

    I would think to wait a while for an ambitious holiday with lots of walking around, but if you have a steroid shot(s) and your joints are feeling really great which is the hope of course (I've had great success with them .. Always worked superbly) then you may feel you can do it, but try pace yourself.

    You will feel better soon and will find a routine and feel more confident, and what you are feeling is completely natural. When I was first diagnosed I was not in denial but didn't cope too well as I was a very very active sporty person. I got very angry about it and upset and my GP arranged got me to see a psychologist to talk it all through. My rheumatologist was wanting that too .. To chat as such about my feelings in her clinic although she wanted to. It helped a lot. My hubby and family were very supportive but usually it helps to speak to someone impartial. There weren't these sort of forums and FB hasn't started then in 1995. Now there is more support online.

    Good luck Helen with everything and hope soon you are moving pain free and are in control of the arthritis. Then you can have a little hol with your family. xx

  • Thankyou very much for your response. Yes the rheumatologist has already spoke about a steroid shot soon when I am next seen so hopefully that will go ahead.

    Yes I will definitely be waiting to book our holiday until I feel I am ready. I'm way too much of an anxious person to just book it not knowing how I will feel at the time but I definitely have something there to look forward to.

    I've had a great response to my message and feel a little more cheerful at present because of that so I cannot thank you all enough. Xxx

  • You are a lovely girl I can tell and things will work out but it is scary indeed at first and yes we to often have to adjust and pace outselves, but we are so glad we are still enjoying life and getting out there. You will enjoy your holiday even more when you are feeling better soon. That's a promise! 😍xx

  • I will hold you to that Hun and I will do you a deal! When I get to Disneyland and enjoy my holiday I will bring you a gift back to mark the fact that I got there! So we must stay in touch! Xx

  • Aww that's kind but you don't have to bring a gift back. The gift would be to know you got there and you all had a great time and that you felt better. Keep in touch and keep faith that you will feel better soon. Speak again very soon. xx

  • Just a small gift to mark the fact that I got there 😊 a key ring or something of your fave Disney character. I will just be so glad to be there choosing it for you!!

  • 😘😘 so sweet

  • Thanks Hun for the support it is very much appreciated xx

  • You're very welcome. We are very supportive here as we've all been through some crazy times but we assure you things will settle for you soon and you sound as though you have a good rheumatology department and staff so I know they'll look after you ... and they already are. xx

  • Thanks Hun I hope you are right xxx

  • It may take a little time to get totally sorted but you are doing all the right things and so are your care team. Just try to pace yourself and be kind to yourself and take it easy when you can. xx

  • I think that's it, I know it will take time and I'm prepared for that, I just need to see progress I suppose so I don't feel I've been forgotten xxx

  • They will not abandon you but I'm not sure why it's not been possible to get your med on the computer system? Presume no further update yet from them? You could always ask your GP to phone the consultant and ask. xx

  • Yeah I'm hoping they will contact me soon as they rang me just 3 days after my referall to update me and 'keep me in the loop ' but if not il speak to my gp xx

  • Yes sweet girl don't let them keep you waiting too long as I know you want to get started with taking your medication and feeling better. Nighty night Helen. xx

  • Thankyou honey and what I would do for a better sleep!!! I wake roughly every 40 mins to an hour 😩 guessing that's normal? Xxx

  • If you are very uncomfortable and you lay heavily or for a long while on the most painful joints .. ie your knees .. Then you could well be waking up all the time trying to find a comfortable position to sleep. Obviously if you've young children at home or to organise getting to and from school then you can't please yourself to take a nap during the day to catch up. Hard. 😒 Once the arthritis is controlled you will have much better sleep I am sure. It's more likely too that your mind is working overtime and worrying. That's usual when you've major things on your mind to wake up. I'd mention all this to your rheumy. A rheumatology physio or OT could show you ways to support joints whilst you are in bed asleep. It's certainly worth an ask. I slept so much better once my meds were working. Hope you can get your script soon. xx

  • Thanks Hun. I think as you say it's a mixture of things. Hopefully just something else some amazing meds can fix for me 😊 thanks for the advice Hun xx

  • This is a lovely, supportive group. You might also enjoy another group for PsA: livingwithpsoriaticarthritu...

    Hope you join us there as well!

  • For some reason it won't let me click the link ☹️

  • Maybe you have to join/register there? x

  • Not sure Hun il give it a try thankyou xx

  • I signed up today but not sure how it works, it looks a lot more complicated than this xx

  • Hi Helen

    My PsA first started about 11 years ago, affecting my knees and ankles, with psoriasis affecting just the palms of my hands and soles of my feet. My flare ups, albeit they are infrequent, are absolutely excruciating, so I feel your pain as the saying goes! In between times, though, I am pain free and fully mobile, so while I know that others are affected in different ways, the outlook needn't all be doom and gloom.

    For various reasons, it took a long time for me to be diagnosed, and even longer to start treatment, so it is good to hear that things are moving fairly quickly (for the NHS!) and that you are likely to start treatment soon, so I hope you can take heart from that.

    So two things spring to my mind:

    1) If possible, consider buying aids to make your life physically easier and maintain your independence and dignity. I live alone, which can be immensely challenging when a flare up strikes and I can barely stand up because of the pain in my knees or ankles (or both!). I struggled on for many years before the penny dropped that there are things that can help me get through the day and manage some of the basics of life such as eating, washing and going to the loo! So over the years, I have bought a lightweight wheelchair for getting around the house, and a mobility scooter for getting out to the local shops; a bath board so I can at least sit above the bath and hose myself down with the shower(!); a folding toilet frame that can be stored when not needed and other bits and pieces. There's a huge range of things available and you might find it helpful to have a look at sites like completecareshop.co.uk/ and betterlifehealthcare.com/

    2) You may sometimes see posts about nasty side effects of methotrexate and other drugs, but please don't be alarmed - yes, they can cause side effects, but everyone reacts differently, and many of us have no problems whatsoever. I have been on mtx for a few months now and have been absolutely fine, and no sign of any flare ups so far. Also, steroid jags in the bum don't hurt a bit, except they maybe leave a little tender bruised area, but they definitely help - not instantly in my case, but within a day it two the pain eases.

    Finally, keep that holiday in mind as your goal for when you feel ready for it - we all need something to keep us going when things are tough, and holidays are my thing, so keep your chin up and look ahead to better times.

    Wishing you all the best

    Joan x

  • Joan you lovely lady, although I am so sorry you are a fellow sufferer of PSA reading that message gave me some hope!

    Oh yes I have read sooooo many methotrexate horror stories but luckily I'm the kind of person who thinks 'I'm already knackered all the time (have anemia too!!) and nothing can be worse than this pain' so il try anything. I keep saying to myself that I'm struggling so badly because I'm not on any real treatment yet and that perks me up a bit. Also had so much bad experience with the NHS with my mum who was basically left to die as she wasn't tested properly for her cancer so with how quickly they are moving with things at the moment it's giving me a tiny bit of faith back!

    I am definitely keeping my holiday as my goal because I know it will feel so much more special knowing I'm going because I have my disease under control too.

    Thankyou so very much again. I am so very humbled to hear such lovely kind words from a stranger, makes me realise there is good In the world 😊 xxx

  • Thank you! 😍😍😍😍😍 - I look forward to hearing how you get on xxx

  • Hi,

    I'm 35 with diagnosis of psoriatic arthritis-no psoriasis though! Got three children, 7, 5 and 18mths. I was diagnosed in March after initial rheumatology appt in Jan and then being sent for further tests. I started sulfasalazine in April and I feel so much better than I did over Christmas and into March. I still get some joint pains but these are fleeting and never need pain killers. I'm still taking naproxen with the sulfasalazine. I can do all the things I was doing before the joint pain started. I just wanted you to hear a positive story, I know I've been fortunate in that the first medication I've been put on has worked. I know how you're feeling as I was also there, worrying about the future and the children and what life would be like-it's a big adjustment. Hope you soon get some meds that help xx

  • Thankyou so very much for sharing your story with me. So very glad your feeling better 😁 I so hope I start to feel better soon!! It's hard work with the children isn't it! I'm enjoying reading these positive stories as it gives me some hope! Before I just scared myself with googling and felt even worse. Xxx

  • Don't give up once your true diagnosis comes through and they get your Meds sorted it will get better knowing,is your first big step ,please believe me you will make it (I was 29 when mine started I'm 61now my children were the same ages as yours too ) listen to the others on here we'll help as much as possible πŸ’•πŸ’•

  • That's good to know that someone is exactly the same as you. Did you find people looked at you and said "your only in your late 20s how can you have arthritis?!" Not a clue have they. Thankyou so very much. I've had so so many positive messages just in the space of 24 hours and it has cheered me up a little 😊 thankyou very much xxx

  • And don't forget you can always hire a elec truck to go round Disney land in Paris your kids will love it keep looking to the future my love 😁

  • Thankyou very much, I'm hoping to go round on foot but at least there's options if need be! Thankyou for your kind words xxx

  • I get that even now .. You're you young .. As I look much much younger than my 50s (so proof RA/arthritis doesn't make you look haggard/old which I am very happy about!) It is hard to have arthritis at any age but when you are young and get grounded to a halt it's almost a blummin insult. I was 35. Once you're controlling the arthritis instead of it controlling you, you will feel huge relief and feel so much happier. I promise you will be happy again! πŸ˜€ xx

  • Hi I really feel for you. I started wirh RA when I was 16. I married and had 2 children and the RA reared it's ugly head more so after each. I remember feeling exactly as you describe. Believe me, life is exhausting for you right now but in no way is it over. Trust me, there are better times ahead. I too struggled with the holiday dilemma. You may not want to hear what I have to say but I'm sharing it because it made a difference to my whole family. It was suggested that I use a wheelchair during the holiday to whichmy reply was a resounding NO WAY! My mum pointed out to me that it would actually 'benefit' my family because no one would miss out and I would be able to enjoy the holiday without being exhausted. She was right, bless her! Once I'd swallowed my pride we had a wonderful holiday and laughed so much at our novice attempts with a wheelchair! I did end up as a cloakroom on wheels sometimes but it was worth it! Maybe if you plan your holiday with a contigency plan just in case you're not tip top you can still go ahead but know you'll be able to cope. Good luck and don't be too hard on yourself. I'm quite near Manchester. Feel free to 'chat' whenever.

  • Yeah it's definitely not something I want to have to do but if I need to and it's a case of if I don't we don't go then needs must! I will see how things pan out but I wouldn't not go and let the kids miss out just for the sake of my pride. Your right. I will see how I go but I will keep it in mind thanks Hun. Good to know things arnt all bleak as they seem right now. I'm actually in wigan which is close to Manchester if you know there? Xxx

  • I do know Wigan. I was over there couple of weeks ago. I'm in Rochdale. This forum is a real bonus. We all need a listening ear so stay in touch. I wish you well at your upcoming appointments xx

  • Ah yes I know Rochdale. Thanks Hun and I wish you the best of health xxx

  • Hi I know how you feel and without going into it too much (because I've got to go to work) I felt like this before I got my "proper" diagnosis of RA and OA but now I'm on the right medication I feel a lot better and I'm sure you will too. There is light at the end of the tunnel I'm sure you'll have a fantastic holiday. Sending you big hugs x

  • Thanks honey for the positivity. Hope you have a good day at work. Glad you got your diagnosis and some good treatment xxx

  • Just want to say that I had all sorts of weird symptoms for 19 years including psoriasis of the scalp but all my health problems ceases when by chance I started on injections of Vitamin B12 & folic acid which helps B12 to work properly. I needed injections which bypass the digestive system because my body was not producing intrinsic factor to help the B12 gt properly absorbed into the body (essential to every bodily organ) - pills and diet were therefore absolutely no good. Read COULD IT BE B12? by Sally Pachalok.

  • Hi!

    Read ur post and can totally relate to ur situation.

    Been suffering from joint pain for over a year. Eventually manned up and went to GP. Was told it was a mixture of age and wear and tear. I'm only 49 and do enough to warrant wear and tear 😒.

    Commenced on brufen then on to cocodamol and naproxone. Never really made much difference. Ended up walking like a zombie extra from The Walking Dead.

    Went to see rheumatology consultant and diagnosed with psoaratic arthritis. Prescribed methotrexate. Read all the scary stuff and didn't take it cos I'm a bit of a jessie (and a nurse). I suppose I should know better. However, pain and discomfort continued to escalate. Had to rely on teenage daughter to help put socks and shoes on. Felt really miserable.

    Was prescribed steroids (15 mgs) daily reducing over a period of six weeks. Felt great, although not ideal for long period of treatment.

    Decided that I enjoyed feeling better so much that I started on methotrexate injections after much encouragement from others. Been taking it for over 12 weeks. Definitely feeling better than I did last year although not 100%. Might need a bit more tweaking.

    Hope this helps. Life can get better again. Just hang in there and follow the advice of the medical team.

    Good Mental Health

    George

  • Ahhh thanks for that Hun you have also given me hope! I had a breakdown in work today as someone asked how I was (god forbid πŸ˜‚) and I just cried and cried and cried in one of the offices.

    So so glad your finding treatment that is working for you!!

    Oh god my googling In the last few months has been absolutely rediculous!!! It has scared me so much that even I have said enough is enough and just stopped!!

    I hope I find a good medication for me and like you I start to feel better😊

    Thankyou very much for your post Hun xxx

  • Really hope things work out for you!

    There is always hope.

    Look forward to feeling better and getting ur life back and doing things with your family.

    I've found that because I feel a bit better I forget that I need to change some things that I do. Went to an Example concert in August and bounced around for a bit 45 minutes. Felt great at the time but suffered a bit for the next 5 days. Sometimes we need to alter how we do things so as not to put pressure or damage our joints. We can still live though!

    Take care and keep ur chin up!!!

    Good Mental Health

    George

  • Thankyou George 😊

  • So Sorry to hear this, Helen. I think you needed to let it all out as there's been a big build up of anxiety so it is normal. I hope you feel relieved to have let it out how you feel.

    Not long after I was diagnosed I met a woman at hydrotherapy for several weeks who was very bad with lupus and osteo and she was so unwell and had had many negative experiences that it terrified me, and I thought .. That will be me, but it was just her frustrations and she was in such pain and she didn't mean to upset anyone. Just honest. Remember that things you read too online don't all apply to you. I do think that the benefits of a physiotherapist would help. They are so upbeat too. They give you a lot of hope and confidence.

    It was a perfectly natural reaction to break down when you were shown support so don't feel bad about that. You are in a lot of pain, so it's hard. You're doing great working and two kids. You are a strong lady but even the strong ones need a cry at times!

    Any news on when you can get your medication started yet? Hope it is soon.

    Gentle hugs. xxx

  • Your reply came at the right time. Had such a bad day and spent most of it in tears 😒 nope I'm yet to hear back from my rheumy about going to clinic.

    My mental state is going worse and worse with the waiting and with me not sleeping too I just feel dreadful constantly and that's before any arthritis symptoms! I just feel so unbelievably low and like I'm never gonna feel any better. I just feel like giving up!

    Xxx

  • Never give up Helen. You will soon be on the mend I assure you. Can you go back to your doctor and say how the anxiety is affecting your sleep and work? I hope your rheumy team are going to be in touch soon with you. Is there a helpline you can speak to one of the rheumy nurses on? xxx

  • That's just it Hun I have no contact numbers so I just feel in complete limbo. Thankyou so much for your reassurance it does help. I just cannot believe what my life has become xxx

  • Helen, can you ask your GP to get in touch with the rheumatology department and find out when you should hear from them re startling the med, then you know rather than being in this awful limbo. If seems awfully odd you haven't got a script sorted yet but I may have missed something you've posted about that. xxx

  • Hang in there .. Gentle hugs xxx

  • I have literally felt like my knees and ankles have been burning today with how intense the aching pain is 😒 it is so so horrible xx

  • Please investigate a second opinion. xxxx

  • How do you mean Hun? I've decided that tomorrow I'm going to ring the hospital where I was referred to and speak to rheumatology and see if I can at least get a update as at the moment I'm just waiting to be contacted and if that is gonna be after my last scan (10th October) I really cannot wait that long. Do you think that is the right route? Xxx

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