I'm just one pain in the butt!: I'm becoming a pain in... - NRAS

NRAS
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I'm just one pain in the butt!

Jaxine
Jaxine

I'm becoming a pain in the backside! Is it just me or does anyone else out there become paranoid about their health? I'm doing my own head in! If I feel the onset of a cold/ soar throat cough i think I'm developing phnemonia, a rash appeared on my face recently over the bridge of my nose I thought Lupus, I'm afraid the list goes on. How to stop being such a hypochondriac! I've felt so good up until recently ( on and off) but currently feeling ridiculously sorry for myself. I have an in grown toe nail, cystitis, a flare up in my legs and I'm thinking ive had enough IT'S XMAS!!! Give me a break! I try to be positive but after a year of being on a tick list of meds I'm just getting angry. Yea no point I know. I've steered away from googling RA for a while ( ignorance is bliss and all that malarky) but recently been researching more WHY DID I DO THAT! Just scares me more.

Sorry as I said I'm just one pain in the butt! Looking for inspiration and a telling off well only a little one!😂😂

73 Replies
oldestnewest

We could start our own club I’m just the same a bad year etc I don’t have an answer just hope something works soon then I can stop worrying 🙄😁😜

Jaxine
Jaxine
in reply to J1707

A cure would be great😂

You are not paranoid, concerned maybe?

I too have had a bad year, my chest is poor, I don't think I'll be on baricitinib much longer( appointment 8th January).

I think it would be most unhealthy not to be concerned about what happens next ?

Sitting back and not being concerned might suggest depression, emotional detachment or other mental health issues ? You are voicing concerns, you are still focussed enough to do that. That's good.

But, your concerns do need to be dealt with in a positive way. What's your main issue and how can you go about improving the issue might be a starting point ?

I get fed up with it all too, wallow for a wee while, then get going again. It is hard at times.

Jaxine
Jaxine
in reply to Mmrr

Yes well said! I'm generally positive, but as you and everyone here well knows it can be stressful and demanding when you raise concerns to the initial contact the R N and often communication can break down between nurse and consultant. Appointments are not frequent especially with the Consultant so time lapses. Only iss ue I have generally is meds not working and need changing but it takes such a long time. Up hey ho onwards and upwards.

I bet every one here had themselves in a self diagnosed tizzy when they were first diagnosed.....😢

Don’t worry....it wears off when you realise that 99% of what you think you’ve got...you haven’t.

It’s Christmas...stop looking for imaginary ailments & enjoy yourself!

🎄🎄🎄

Jaxine
Jaxine
in reply to AgedCrone

I shall enjoy Xmas, just having a winge day!

AgedCrone
AgedCrone
in reply to Jaxine

Whinge away..we all need to scream at the moon some days,

Jaxine
Jaxine
in reply to AgedCrone

I seem to be screaming more days than not at the moment, need to nip it in the bud!

AgedCrone
AgedCrone
in reply to Jaxine

Yep..have a naughty mince pie & calm down.,

Jaxine
Jaxine
in reply to AgedCrone

Calm down Ouch!

Hum! A telling off? You've probably done that to yourself quite a bit. I am newly diagnosed and recognise much of what you are saying. I worry especially about co-mobidities, especially of the heart as heart disease runs in our family. So, having read around it, gone through the 'fear' barrier, I finally told myself that under no circumstances will I not walk the dog, give up ballet (except at present as I'm disease active) etc as I know that it will protect me in the long run. Although, reading around the disease can feed ones 'hypochondiac' tendencies (we all have them I suspect) it can also help you to protect yourself, or indeed arm yourself to engage in professional discussions with your RA team. Breath, immerse yourself in something your love, be it a cake or a book and try to switch off that part of your brain that is indulging itself. Easier said than done I know.

It's all too easy to ask someone to pull their socks up, but as my father used to say ' are their arms long enough'. Chat to a trusted member of family or a friend, they may help you to put your fears to rest. My family mark them out of 10 on a reality score. But on a more serious note, I have heard some people have found cognitive therapy supportive. Just some thoughts and hope they help.

Recorder500L
Recorder500L
in reply to RosieA

Love your father's reply 'are their arms long enough', made me smile. My daughter was trying to hurry her daughter aged 4 the other morning to dress for school. She asked the question ' Have you got your socks on yet, Isabelle'. Quickly she replied, 'I've got two to go'. It is the little things that make our RD worth being determined and strong for, enabling us to cope. Take Care.

Jaxine
Jaxine
in reply to Recorder500L

What a sweetie great answer!

Jaxine
Jaxine
in reply to RosieA

CBT is great I should know I studied psychotherapy and counselling thus helped many people with their individual trauma, but useless when it comes to mine!

AgedCrone
AgedCrone
in reply to Jaxine

Over thinking anything...including RA ......is counterproductive.

Look after yourself, be happy & thank your Lucky stars (if in UK) you have the medical attention you need.

Believe me.....it works.

Jaxine
Jaxine
in reply to AgedCrone

I do look after myself, I am extremely happy in ,my life, incredible, amazing husband, 4 beautiful children, 3 beautiful grandchildren I'm generally extremely positive and and have a healthy outlook on life however, at times with RA it tests your indurance with all the debilitating effects of the disease and the side effects of the meds. Just having a winged and a rant!

Well this is embarrassing ' practice what you preach' I'm a qualified social worker and have ( until 2 years ago) studied for 3 years psychotherapy and counselling in existentialismn. So you would think with all my experience I am extremely qualified in mastering and understanding the psyche of the brain! But alas when it comes to my own thought processes I've been useless. At least I now have an even deeper understanding but it does take time. I had at the beginning an extremely positive outlook ' I shall not be defeated" but this RA can just drag you down.

Stars27
Stars27
in reply to Jaxine

You know , I think that’s healthy . It’s a serious condition and most of us can’t be positive all the time . Feeling the reality is part of the process . You are doing great , and soon you will be feeling more positive . But it’s ok to feel the feels sometimes

Jaxine
Jaxine
in reply to Stars27

Thank you Stars, made me feel better already

Agoodlife
Agoodlife
in reply to Jaxine

I do understundom you so well. For me despite my own experience and education and psycho analysis my five years of RA has forced me to find my different layers of self and find the connections to RA both psychologically and on a biochemical cellular level.

Jaxine
Jaxine
in reply to Agoodlife

Yes we are experiencing the illness on a biochemical level but it takes huge mental strength to remain positive in coping with the illness. Yes I have certainly realized my strengths but with that also my weaknesses All a learning curve. Realized the thesus of the darker side of weakness

I think anxiety is a problem for most people with a long term health issue. We are well aware of how fragile human life can be.

Don’t let it get the better of you... perhaps it’s time to ask your GP for help? Given the wait for talking therapy, you may have to wait anyway and sometimes when you say out loud ‘ I think I might need help’ it starts a change. Best of luck xx

Jaxine
Jaxine
in reply to Lyndy

Just going to stamp my feet a tad harder

My experience is that the first year is the worst! The whole thing is just awful, especially if you have been normally healthy beforehand so having to get to grips with spending so much time in medical world is endlessly frustrating. And things that you would have shrugged off become all consuming.

But in just a few days you’ll be out of your first year and all will be well! 🤞🏼🙂 hope so anyway.

It really does get absorbed into normal life eventually.

Jaxine
Jaxine
in reply to helixhelix

Love that helixhelix, one year done, worst year it's just got yo get better!

AgedCrone
AgedCrone
in reply to Jaxine

Just got to dig deep Jaxine I’m 20+ years down the line and I will not let this xxxxxxx disease beat me.

Jaxine
Jaxine
in reply to AgedCrone

I think y present state of mind is a consequence of not yet being properly controlled on drugs. This time last year I had the worst Xmas with a newly diagnosis of RA and was experiencing excruciating pain. I however remained positive and determined and looked forward to to a positive treatment plan and meds that would work. One year on and failed attempts on Dmards and two biologics I'm still clinging to the surface and treading water. But the one thing I have become to understand and appreciate from listening to others on this site, my waiting game for success seems to be normal. Just wish my RA flare could have waited til after Xmas!

AgedCrone
AgedCrone
in reply to Jaxine

If you have had ?Dmards & 2 Biologics in the space of one year I wonder if you gave each one long enough?

If your rheumy would like you continue on something you don’t think is working ....maybe you should give it a chance?

I was persuaded by my ultra mono pharma rheumy to take drugs I was convinced weren’t helping me .....then overnight they suddenly clicked in.

But it really is a long game for some to find the right combination.. ....I hope 2020 will be your year.

Jaxine
Jaxine
in reply to AgedCrone

Methotrexate effected my lungs ended up in hospital! So Co sultant verycworried about Dmards, however I tried another one and had serious side effects do was put straight on biologics. First biologic my consultant took me off due to bad side effects. Ive actually decided myself to persevere with my second biologic! Will see

AgedCrone
AgedCrone
in reply to Jaxine

I muddled around on Dmards for 16 years...been on a Biologic since 2016.....so far so good...but still not complacent.

Hope your Bio works.

Well today's blood test results required no action, so that's one thing less to worry about! :-)

Lolabridge
Lolabridge
in reply to wishbone

Yippee!!

The pneumonia vaccine will take one of those worries off your hands!!

The ruminating is the worse thing after visiting Dr Google - New Years resolution? To give them both up!

Seriously though... it’s tough so be gentle with yourself cos you’ve switched from being the supporter to being the supported for now and it ain’t pretty.

Things do get better as things settle down and you find a slightly adjusted normal once again. Over the festive season there will be natural rest spots so make the most of those (post Xmas dinner snooze can go on for quite a while these days 😴🥳😴).

All the best

Ali

Jaxine
Jaxine
in reply to Ali_H

Is the pneumonia vaccine bad?

wishbone
wishbone
in reply to Jaxine

Hi Jaxine, if you're asking if it hurts then I had a booster a fortnight ago and it did sting a little more than my flu jab, but is nothing compared to the pain we have with RD, and who needs pneumonia!...I certainly don't with my lungs! I didn't have any side effects after the injection.

I'm a born worrier by the way and surprised I haven't gone to pieces with all that's going on with me. I soldier on!........................................ :-O

Jaxine
Jaxine
in reply to wishbone

Having it beginning of January and I'm very happy to be offered it!

Ali_H
Ali_H
in reply to Jaxine

No and it last for 5years I believe!

Jaxine
Jaxine
in reply to Ali_H

Bring it on!

Help-
Help-
in reply to Ali_H

Can't give up Dr Google.... He's the only one on call 24/7

Jaxine
Jaxine
in reply to Help-

Agreed Google is great for most things but can cause too much anxiety when googling Ra facts. There is only so much I want to know, it's not being ignorant I just gont want to read about life expectancy, heart disease etc etc.

Ali_H
Ali_H
in reply to Help-

So’s a dripping tap - something else worth avoiding!! 😎

Yep, my year has been up and down and one med after another. How many side effects do you tolerate before you phone the Rheumy....

RA - the disease that keeps on giving ha ha ha

You are not alone.

Jaxine
Jaxine
in reply to Brushwork

To be honest quite a few before a reach for the phone - head aches, nausea, sinusitis, a few cystitis attacks mixed up with a few mild flares then it's 'right enough' cystitis has become a UTI and the mild flare a burning rage! Bless RA it really does care for sure!

It’s addictively annoying isn’t it? Yet, somehow positively affirming - or so we think. ‘I knew I’d got that’. No, you didn’t and ‘no’ you’ve not.

Googling RA, symptoms or otherwise, teaches newly diagnosed about the disease, which is good. Trouble is so many sites, including the NHS, veer towards gloom and doom. A newbie can come away thinking ‘we’ll, I’ve got 10 years to live, my hair’s gonna fall out, every joint in my body will lose the will and from now on I’ll be the recipient of all strains of foreign flu’!

As we progress through (a lot of us fight through and by fight I mean the ‘great institution plus it’s fine dept. staff’. Sorry, do I sound cynical? Do forgive...not all, obviously...phew). But, you know how you are feeling or reacting and so you must relay info. to your rheumatologist. Be in charge of your own body and it’s needs.

It’s all fine Jaxine, it really is. As you begin to understand your own body’s version of this disease, and it’s responses to your meds, you’ll settle down and become an old-timer. It could be a lot worse and it’s not usually anywhere near as bad as medical sites make out. Become selfish as hell so you put you first. You must. Become deaf to folks’ pleas re: socialising, and think about wearing a mask like Michael Jackson during winter.

Because- getting a cold or virus is a very BAD THING. Avoid it at all costs. Do get the flu jab and, if old like me, pneumonia jab.

Learn about the thing by all means but don’t obsess about it. If your rheumatologist is good (lucky you) but if unhappy with- change, and change again if still not happy. A lot of us have as it’s such a personal, individual kind of disease. Not all consultants seem to get that.

Good luck, it’s all fine. You’re in charge, not RA.

Jaxine
Jaxine
in reply to lilley22

Some good advice thank you. I dont feel in charge of my RA, when I'm feeling good I take the opportunity to indulge and enjoy with a finger up to RA! But then it rears it s ugly face and throws a finger back! Sick to death of fighting for change and some relief, totally understand I'm not the only person deserving attention for their own path of struggle but it gets tiresome. Hoping 2020 is a good year. Merry Xmas

Bacharia
Bacharia
in reply to lilley22

Regarding fighting the "great institution", why do the "office staff" deliberately (apparently) put so many obstacles in our way? I've lost count of the number of times I've had to express myself very forthrightly over appointments that have been made for me at totally different intervals from the ones the consultant ordered. My latest red-tape argument was with the GP surgery over refusing my request for a repeat prescription for methotrexate because it was "a day early". I'll spare you the argument about how it wasn't at all. Suffice it to say that when I asked for a "common-sense" answer to the question, "What great harm would be done if I received a prescription for a month's supply one day early?", someone finally admitted it should not have been turned down and actually apologised! It's nice to win a skirmish, but oh, so wearing!

Jaxine
Jaxine
in reply to Bacharia

Exackly! I'm presently having a horrible flare in my knee I can literally hear and feel the grinding totally void of healthy fluid. Rang the R.N she agrees I need an immediate steroid injection however they can't administer it before Xmas, so suggested my GP. I've waited all day and doctor rings to say they are not equipped/experienced to administer it. The R. N helpline hours have changed only being available twice a week for a one hour slot and is permanently engaged. So another day of fighting tomorrow! Why can't they just fit me in for a quick injection I'm not insisting on an hours appointment to listen to my woes, I'll be in and out before they reach for the sharp bin! Merry Xmas😂

Bacharia
Bacharia
in reply to Jaxine

To be honest, if the GPs are not equipped or experienced properly to do it, you are better off not having them try. A botched injection could do more harm than good.

Could you ring your consultant's secretary and, very politely, ask her to tell the consultant how bad things are? Mine is a miracle-worker, worth her weight in gold. At any rate, I don't think it would do any harm to try.

Jaxine
Jaxine
in reply to Bacharia

Damm good idea I do actually have the secretary s number. Last time I spoke to her I felt rather intimidated and it takes a lot for this strong feisty cookie to feel intimidation but I felt 14 again talking to Head Mistress! But needs must.

Bacharia
Bacharia
in reply to Jaxine

Well, she is a kind of gate-keeper to the consultant and maybe needs to be a bit strict so that the consultant is not overwhelmed by patients wanting to contact him/her. Apologise for bothering her, be a bit deferential, but make sure she understands just how bad your knee is and why you can't get anything done by the GP. Don't hold back from crying if you're feeling really bad. We don't have to be brave all the time. With luck, she may be able to get you to a different RN or even a registrar.

Crossing my fingers for you.

Jaxine
Jaxine
in reply to Bacharia

I will thank you, crying will be no problem!

I think it is fine to do research on our illnesses and sometimes we find out things that the doctors and rheumys have not suggested. After all, they only have a few minutes with us about twice a year, but we have a lot of time to find out answers.

I have had a bad year as well. I have had two operations, one of them a major one and the other, although minor was very painful. I also know that I have two operations coming up next year. I am on so many tablets (31 every day and sometimes more) and yet I am still not well. I get down at times and think that we all must do so, after all we are only human. Like lilley says it is important to avoid colds and other infections as much as we can and all my friends and relations know not to visit me if they are not well. Also of course we must make sure we have our flu jabs every year and also our pneumonia jab which is lifelong.

I hope you soon feel on the up Jaxine and have a good Christmas.

Jaxine
Jaxine
in reply to holly-willow

My goodness I really feel for you, having to endure not only the debilitating pain of RA but the added stress and pain of operations. Have you had RA for a long time? Yes I'm having both jabs early Jan. Merry Xmas to you too

I agree a pain in the butt, but for thats one bit don't hurt at this time. I think your actually normal so stop worrying about worrying and open a box of chocolates and scoff a few with a glass of wine. lol x

Jaxine
Jaxine
in reply to medway-lady

Sounds wonderful, but cant drink wine UTI!!

I get Fosformyacin from Renal Hospital a one off dose works a treat. So only a couple of days with no wine. lol x

Hi m-l, hope you are feeling as well as can be. I was prescribed a sachet of fosfomycin to cover me against infection during bladder surgery and it did its job just fine. Unlike nitrofurentoin which was used for previous bladder surgery and I ended up with urosepsis. Apparently fosfomycin can be effective against difficult UTIs, including resistant e.coli strains like I have. The impression I get is that doctors don't like using it too often to try and avoid future resistance problems.

Jaxine
Jaxine
in reply to wishbone

Thanks for that. I'm in such catch 27, I am currently experiencing a flare up (on a biologic) but I'm also suffering from cystitis which been prescribed a 3 day course of antibiotics, I've not been tested for an infection yet just an over the over prescription. However I need a steroid injection for my flare, I've been on the phone over the course of 2 days to get an appointment at the hospital but alas they wont give me a steroid Injection if I have an infection! Steroids suppressing the immune system too so it would be a double whammy of suppression i'm doomed!

wishbone
wishbone
in reply to Jaxine

I'm all too familiar with catch 22 situations of my own...you have my sympathy.

I know that female UTIs are a different kettle of fish to male UTIs, but if you are having recurring UTIs then I would think your urine needs to be not just dip tested, but lab tested as well to see what type bug you have so it can be treated with the appropriate antibiotics. My urine was regularly sent to the lab when I had a spate of UTIs a few years ago.

I haven't had a UTI since I started taking a good quality raw manuka honey nearly3 years ago. Whether it's helped any I can't say as I had to stop taking all strong immune suppressants around the same time as I started the manuka, which I would think is the main reason why my UTIs ceased. That said, I'm not going to risk stopping manuka just in case it is doing something besides tasting nice. Might be worth you giving it a go.

Jaxine
Jaxine
in reply to wishbone

I suffered from UTI s from the age of 9 until 32 in between that time they became so bad I had several hospital visits with 4 day stays. Eventually going privately with many scans undertaken i was diagnosed and had an operation A Ureather Dilatation, my Ureather was unusually small so subsequently i was more predisposed to infection.. For 22 years since i never suffered from UTI s! So I may need another Op as over time the Ureather can go back to it s original size. Seeing Condultant in Jan. Sorry like you're interested in the theses of the darker side of my Ureather 😂

wishbone
wishbone
in reply to Jaxine

Not quite what I was expecting to hear, but thanks anyway for educating me about your problematic ureather. :-) At least having another op will hopefully alleviate things. Nowt wrong with my ureather I'm glad to say, but alas there's nothing can be done for my bladdered bladder! :-O Enuff said as I'm sure you don't want to hear about the dark side of that! :-)

Good luck with getting it sorted

Jaxine
Jaxine
in reply to wishbone

Thanks Wishbone

I think its expensive more like. The Renal consultants like it as its less hard on the kidneys. I've got ecoli too from being in hospital last year. As a nurse pointed out don't touch door handles in the loo's . The previous person might, in fact did not wash their hands. Too late that bit of advice. lol I'm allergic to Penicillin too so makes life a bit more difficult. Not too worried as if it hasn't got me yet as superwoman it ain't going too very soon. lol, lol xxx

You're talking to a superman here m-l...I'm still standing after 4 years of having antibiotic resistant e. coli bugs swimming areound in my bladder...hope I don't come to regret saying that! :-O Now you mention it the nurse who gave me the fosfomycin did say to be careful as it was expensive. I was also told by a nurse ages ago not touch loo door handles with bare hands, but I do occasionally forget. :-(

You would not believe the trouble I had getting urology to prescribe a different antibiotic to nitrofurentoin despite repeatedly saying that it did not stop me getting urosepsis from a previous op. :-O It was only due to my persistence that a nurse eventually took me seriously and I was prescribed fosfomycin as a cover. That was on top of having another serious infection in the form of septic arthritis, which you know about, that also originated from a UTI, so my urologist must have been aware of both infections. I lost confidence in urology after that! Thankfully my old urologist has been replaced with a new one

Yet another rant over! Think I need to ask my GP about going on another anger management course. :-)

Jaxine
Jaxine
in reply to medway-lady

Must remember that!

Jaxine
Jaxine
in reply to medway-lady

Think I'll invest in some plastic gloves from now on!

Is that a preventative medication for UTI infections? I want this too! you mention renal hospital is this medication available by prescription at doctors?

medway-lady
medway-lady
in reply to Jaxine

No not a preventative but a medication. Its a satchet of nasty cheap tasty orange granules. 3grams straight down at night on empty tum. Next day can feel a bit tired but soon goes along with the bug. I don't think GP's can prescribe it though. I had a script for 6 doses from Renal Consultant to use when the bug flare up. Lots of night time visits to loo stings a bit and you know the rest.

Jaxine
Jaxine
in reply to medway-lady

Shame GP s cant prescribe it sounds like the perfect cure,

I know where you're coming from. A list of meds is a reminder that you needs meds etc. Stop thinking into it, take your meds and change your direction of thought to gratefulness. Read books about things other than illness etc. Hope this helps! Also enjoy the days with sunshine in it. <3

Jaxine
Jaxine
in reply to ralinn

That s all I want to take my meds, feel better and get on with life and take the bad with the good, however the meds are not working which leaves me in pain and despair which subsequently leaves me morose with too much time to think doom and gloom! But enough already Jax onwards and upwards I will not be defeated! I'm moving to Bath they apparently have the best rhmertology hospital The Royal National Hospital for Rheumatic Diseases. Yippee!

I find myself in the same boat, I have psoriatic arthritis and it is a constant battle for some sort of normalcy and as soon as I kind of get a handle on it (or I think I do) I get a new issue that throws me for a loop. I take a multitude of medications, I see my doctor regularly, I tell them the issues and they say, "I'm not really sure what is causing that, I'll see you in six months and we will see if the symptoms are still there." Really!!!! Aaaggg!!!! It is frustrating to say the least!! Your not alone. I think we probably all struggle with this because there are so many components to having any type of autoimmune disorder. No two people are going through the same thing. Don't be to hard on yourself, I found that a journal helps. I write down how I feel in the morning and I write down in the evening the highlights of what I did that day and for me I wrote down what I ate, then you can look back and see what activities and what foods could possibly be triggers. I figured out alcohol, sugar and some other foods were huge no-no's for me. I also have problems when it's to hot or to cold and so I need to limit my outdoor activities at that time. Journaling has helped me figure out a lot of things that a Dr. couldn't. Good luck!!!!

Jaxine
Jaxine
in reply to Dszabo

Good advice thank you. Merry Xmas

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