Yeah...my own stupid fault, then

Hi all,

Having a bit of a difficult time right now but I actually have no-one to blame but myself.

Diagnosed about 18 months ago with only the most minor of symptoms - swollen little finger - and put on a hefty MTX dose. I got completely freaked out by everything and ended up focusing on the meds and getting totally obsessed with that.

I realise now, that as I only had such mild symptoms, it was very hard for me to come to terms with the diagnosis, especially as I had only recovered from 20 years of severe depression and anxiety for a few years and was feeling like I had my life back.

So....

I decide to stop taking my meds because I was crying all the time and freaking out.

4 or 5 months later, started getting pains all over the place.

Now, I've got pain in my hands, wrists, knees, shoulder feet. Can't have a bath because I can't get out. Can't carry a mug of tea. Can't open anything. Can't take my top off because my shoulder won't co-operate. Can't sleep. can't lift anything. Can't walk much.

So, I'm back on 20mg mtx. 4 weeks now. Hoping that it'll sort all this out.

I think I'm getting my head round the fact that I've got a serious condition and I can't just sulk and cry and ignore it. Let's hope so.

Hard to accept those things when you've only got a swollen finger....

Lesson learned. :-(

38 Replies

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  • I have been doing research and following my Drs recommendations. However, after reading so much about how RA can so severely affect people, I have doubts about my own diagnosis and whether I should really be on any medication since my "swollen finger " seems so trivial. You should know that just reading your post has straightened me right out. Thanks for sharing your story

  • Honestly, it's been a roller-coaster. I really objected to the heavy-duty meds because I was FINE.

    And I got really stuck on the fact that you're not supposed to drink and I felt like, "Oh, ok, so my social life is buggered then, too"

    And I felt like no-one was listening, because my symptoms were minimal.

    I kept saying that I was freaked out by the meds and felt like everyone was just brushing off my concerns. The rheumatology team at my hospital are all really nice, but there's an insidious hard-as-nails nice, which makes it difficult to question...

    Anyway, it's taken me ages to start getting my head around it, and now I do wish I'd just done what they told me to, but at the same time, I feel like I wasn't given enough support when I could've done with it.

    Wishing you all the best with your journey, and hope you get to come to terms with it more sensibly than me.

  • The NHS in this country is so overwhelmed with patients suffering with ra and diseases connected to it and the support is getting worse said to say.xxxxx

  • Yep support is dire.My consultant got called away on the day of my appointment. I have had to wait another 3 months to see him despite severe side effects of MTX

  • My consultant appointments have been cancelled 5 times. Have seen the nurse & had steroid injections but feel very let down. .

  • Hi Sylvi

    I think this stems from very poor funding for rheumatology within the NHS rather than it being overloaded. The hospital I attend has made an issue on its webside of how poorly funded rheumatology is compared with funding for other specialties. Cancer and heart disease take the biggest amount. The NHS concentrates on imminently life threating and acute illness.

    They get a lot of false alarms as well. Almost anything can cause a swollen finger, like an insect bite or allergy or injury, but the first port of call seems to be the rheumatology dept, which exacerbates the effects of severely limited funding on the service.

    Rheumatology expenditure consists mainly of investigations like blood testing and imaging, and treatment with drugs many of which are off patent. There is even a dire shortage of rheumatologists because the NHS won't spend as much money on training them as it does on other specialists.Therefore, the treatment is relatively cheap and I don't think it is demand that is causing the problem.

  • I wonder if rheumatology would get a bigger slice of the pie if it didn't disproportionately affect women and the less privileged?

  • thanks for sharing - a great comfort to another headbanger. hang in there. btw you do know what FINE means? : F***ked Insecure Neurotic and Exhausted lol. Hope the moderator doesn't block this for content as i'm really a harmless old [very] granny these days. xx

  • Lol! Good acronym! I'm going to use that!

  • Also, Leroa, I have a friend who was diagnosed at about the same time as me, and her symptoms were immediate and severe.

    I thought, "I haven't got it anywhere near as bad as you"

    But my friend has a spreadsheet - yes, she is a person who would always have a spreadsheet :-D - and she pointed out that my blood test results indicated more active disease than hers.

    So, if we agree to rely on Caroline's spreadsheet, don't get into a dick-measuring contest. Symptoms don't necessarily indicate how severly you might have the illness.

  • Sounds like Caroline is one smart lady!!

    My story is opposite of yours. I wanted the drugs to stop my RA. My rheumy always claimed my RA as mild. He refused to give me mtx and I felt lucky my RA was mild...

    I have spent almost a year on hydroxychloroquine as my RA progressed and my rheumy said not to worry as I have mild RA. Rheumy finally added on sulfasalazine and I spent another year on sulfa and hydroxy as my RA progressed more.

    Well it's almost been 2 years since my first rheumy appointment and my RA is full blown. All the new swellings I've developed are now painful and I haven't worked since January. Finally I get to try MTX.

    The point I'm trying to make is that I wasted 2 years on the milder drugs as my RA progressed. I am really upset at my rheumy for this. I should of been put on stronger meds in the begining.

    So you and I are in the same boat 2 years after diagnosis. I took the meds and you didn't. Don't be too hard on yourself. Let's hope we both reach remission soon!!

    Take care

    Sue

    PS sorry for the rant

  • Oh darling i really feel for you. I think i have been lucky in my 13yrs of ra,but and here is the but everyones ra 8is severe to them and the pain is the same more or less. We all suffer the same whether it is mild or severe. RA is a insidious disease.xxxxx

  • I agree with you Sylvi, RA is insidious!!!

  • How do ladies have a ' dick measuring contest'? 😂😉

  • We all learn hard lessons darling and i am sure we are all guilty of being stupid over the years. My stupidity is over doing my sons garden and pulling a muscle in my back which is still causing me trouble. So don't beat yourself up about it and concentrate on getting yourself back to something better than where your at now, It will take up to three months for the mtx to really to get into your system. Take your pain meds on a regular basis as they work better that way instead of taking them only when your in pain. Hugs darling.xxxx

  • Thanks!

  • Sulking, crying and ignoring sounds like a fairly good definition of me these last 8 months. Either being in denial or thinking I had one foot in the grave! I don't think you should reproach yourself at all for your response to your diagnosis - it is difficult to get your head round - either because it feels so awful, or indeed because it's hard to believe it really is that bad!

    Good luck with the new medication - once it kicks in you can get back on track.

  • I did the same as you, I stopped my meds when I felt well, wow back my RA came with a vengeance, pain everywhere, so yes been there like you so keep strong, you need your meds x

  • Don't blame yourself! You were acting perfectly sensibly according to what you knew & felt at the time. It just didn't work out.

    Just be sure to look after yourself now. The meds seem to work best if you do as much as you can to keep healthy, so resting, eating well and exercise are important. And I'm sure the idea of being able to do any exercise seems impossible right now, but look up 'range of movement exercises' which are just about moving to stop things seizing up.

    Can you turn the energy used for sulking, crying and ignoring it into a determination to get it controlled instead? And maybe develop your own spreadsheet of how much you are improving? We all need something to keep us on track.

  • Thanks! I'm just gearing up to starting to exercise again. I'm not one of nature's athletes :-D and I hate that stuff, but it's clear to me that I need to start doing it again.

    I've realised that moving more does ease the stiffness.

  • Hi - I really think the head mess is something that rheumatology teams need to take into account. I think you've done really well to get yourself to the stage where you are starting to accept the inevitable. It must be nigh on impossible taking a DMARD for a disease that is only causing you to have a swollen finger. You were diagnosed but needed to be ready to take the drug. That's important too so don't go beating yourself up.

    I started out five and a half years ago with what I now realise were fairly rapid onset symptoms that affected my whole body - particularly my wrists and hands. I took it all apparently in my stride with only some deep seated anxiety about my future that I didn't acknowledge, had to wait for about nine months for diagnosis of seronegative RA - so was rearing to start methotrexate by this time.

    But once the MTX worked some of its magic I decided I didn't need it anymore, didn't have RA after all although the doctors had to keep insisting that I did.

    I reluctantly struggled on and had Hydroxy added in, which alarmed me less and for a while things were okay. But eventually both drugs gave me allergic reactions and I had to stop - after about three years. By this time my rheumy had classed my RA as seronegative/ non erosive. I took this to mean mild - but a second opinion from a CT professor told me it wasn't mild it was just very broad and inclusive of other autoimmunity.

    Now I have just learned that I have Sjogren's - probably as my primary disease, and certainly as my more destructive disease. I've been off meds for over two years apart from six months of steroids and a brief skirmish with Azathioprine. It sounds odd but I'm much happier and reconciled with my new diagnosis - even though the RA symptoms are returning and despite knowing that Sjogren's is an equally complex and potentially destructive disease. I think it's taken this five year rollercoaster for me to acquire enough knowledge and maturity (I'm 53 for heavens sake!) to stop rebelling against the inevitable. But in that time I've learnt to trust my instincts above all else. Doctors have got things badly wrong in the past with me so I've learned the hard way.

    Also I feel that this hierarchy of suffering and the mild versus severe has really held me back because I'm apt to think everyone else is so much worse off with symptoms and severity than I am. So it only takes meeting a person who is more incapacitated than I am (and many are because we all have such different histories and responses to pain and illness) and I end up berating myself for thinking anything much is wrong. And doctors haven't helped me much until now because I've been misdiagnosed and shelved and told I probably have cancer and had to fight hard to get to the point where I may only now be allowed to start further immunesuppresants again!

    The psychological effects of all these diseases are huge and there's no room for anyone to be sensorious with anyone else or themselves about how we come to terms with chronic illness and taking powerful medications. I can see why rheumy departments might be "hard as nails" - but it is important that we learn for ourselves - even if the physical price is high.

  • Wow. Just, wow.

  • Thanks so much for replying.

    All of that makes a lot of sense to me.

    I really hope that this diagnosis leads to something positive for you.

  • Thanks Attatel. Equally I hope that the MTX kicks in soon for you. If not there's plenty more options so don't panic!

  • You hit the nail on the head Twitchy. We all have to come to terms with our chronic illnesses on our own terms.

  • I did exactly the same!!!! Still, 2 years on I'm 100% better and hope in time so will you. Sorry for the quick reply, got to get to work!!

    Good luck.

  • Hi. I am sure that we all completely understand why you had a panic when first diagnosed. It is very difficult to get your head round especially as you had little problems at first. This disease is cruel and relentless and rheumatologists don't dish out the drugs unnecessarily. I know you realise this now, to your cost but in time you will accept that the drugs are giving us our lives back. I hope you are more relaxed about things now as being stressed will just make your condition worse as I know only too well. All the best

  • Cheer up love we've all been there and still here and I know it's not easy so don't give up small steps first good luck lol Dawn

  • Depression for 20 years is a tough illness, too. And, you conquered that (and will continue to conquer it). In fact, maybe because you have dealt with the psychological side of illness for so long, you might have some really good strategies to get your head around this disease.

    Several years ago when I was told I have Fatty Liver disease I stopped drinking alcohol and pretty much lived the life of a nun. Food was carefully assessed for health benefits. I quit eating bread, rice, potatoes, pasta, and all white foods like flour and sugar. Boy was I fun to have at a party. : ) I have learned since then to moderate my eating a little. Throw in the odd glass of wine at a function. And, to find the fun in the event and not in the food and booze (which I loved so dearly).

    You will get your head around this. Keep fighting!

  • Hi there as the last post said we've all been there and for myself I've had it since 2014 and the first year was a roller coaster I had to go through all the medication I was started on Sulfazalasine then mtx was added and I was still struggling and all this time my bloods were all right but I wasn't so they added hydroxocloroquine which I was on until Feb this year , now I've started Benepali with the mtx, but the other 2 have been dropped and I'm starting to get strong again and have been going to Aqua aerobics and fitness classes so things are looking up and you will get there but it takes time so keep chin up and keep going

  • Thanks everyone! I really appreciate all the comments and support!

    Wishing you all a good and positive day!

  • Hello . I have severe arthritis and stopped meds for a few years ! Had an emotional break down pretty much in that time . Going to go back on meds but lord knows what damage I have done . Chin up , back on meds & think positively :)

  • Mine started 8 months ago and MTX seemed to help. Then my hair started falling out brain fog and feeling sick all of the time. At the minute I am on Prednisolone 10ml daily and paracetamol as advised by my rhumy nurse. I see consult in two weeks and hope that I will be given some meds that work. My hands are the worst be very stiff and painful but inflammation is in my hips elbows knees ankles. Had to give up my life so far. Used to dance 3 times a week. Now some days I can barely walk. Have to keep battling on. Changed diet gluton dairy free. No grains takes up to 6 months to yake effect its tough but if iteans less drugs I will be happy

    .

  • Sorry to hear this, Paulajolo. I really hope things improve for you soon. best wishes.

  • Years ago I got depressed over meds not fulfilling my expectations. Someone told me they were on 25mg week and it changed the whole situation. I checked with the doctors and they said I could try 25mg no problem. I know now that those extra couple of tablets can mean the world to me. I also did very well on higher doses of Prednisone and later found out they were causing too many side effects. That is a route I have closed now as long term problematic. I still have some probs with right wrist and a finger and the inevitable other pain that comes and goes just about anywhere but I thing the MTX supplemented by the odd Ibuprofen is right

  • Hi - Having depression is a terrible thing, I would describe it as being in a black hole that you can't get out, guess what ? You've done it, now you need to continue with your medication , you will feel better in time. I have had depression now on MTX pain has eased so much, had to come off them for 2 wks because white cells lo. try and keep positive, good luck .

    Sandie

  • Yes what we learn from this is that the diagnosis of RA should never be ignored or taken lightly. It tells you that you have had a chronic inflammation on a subclinical level for a long time and your immunesystem has been compromised which has led to dysfuction and deficiencys on a hormonal and cellular level. So you really need to do something that could stop the progression of the disease. At this point you have two options eather find ways of supporting the dysfunctional immunesystem, adress the deficiencies or take the aggressive med approach shooting down symptoms and unfortunately compromising the already dysfunctional immunesystem even more. New research gives us the possibility to understand the situation in our bodies when struggling with chronic inflammation. We can support our healthy immune system by getting our gut in good health through diet modifications, giving the body supplements that are depleated by the condition, giving the immune system more endorphin ( usually low in RA patients) through increased excersise, acupuncture and LDN. These measures may decrease inflammation and calm the situation, especially when you are still having mild symptoms of RA. A very aggressive RA at the start may need the help of pharma but often just to calm the situation but the support of the healthy immune system should not be forgotten in the treatment of AI diseases even when meds are needed.

  • Honestly, I'm just such a pathetic cry-baby at the moment. I'm 57 ffs. Crying all the time. Tsk.

    I'm in quite a lot of pain. I feel like there isn't anyone.

    I'm just being self-indulgent though because I moaned about pain today and a neighbour who's had RA since her teens immediately came to my door with compression gloves and painkillers.

    Actually made me think that I'm so lucky to have people around me that can help.

    I'm feeling so rubbish right now though.

    Just crying all the time.

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