Sorry, its a "woe is me" whinge :(

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JPH
JPH Member Posts: 45
edited 4. Sep 2015, 17:19 in Living with Arthritis archive
While I know some have already filled out the pip form and some haven't,
my post is mainly directed to those who "have" filled it out.

I've read some of the "Acceptance" thread (not all of it as its a long one), and I've read threads about looking at a life of RA with 'Not what you aren't able to do anymore, but focusing on what you can do"
I'm not at the point yet where I have either accepted having RA or at a point where I've accepted it enough so I can start focusing more on what I can do..

I'm still stuck on the "I'm not disabled, I just have disabilities", and that I only need a walking stick for managing the stairs in the mornings.
Its like telling myself the fact that end of last week i was sat in the middle step of the stairs crying was a one off, although really it was through a mixture of pain, frustration, feeling stupid I'd got myself stuck and wasn't able to come up with a logical solution to getting myself unstuck but mainly a lot of it was (omitting the expletives) "why is this happening to me!!!?".
Basically I'd gotten down a few steps left foot first, that hurt too much so tried right first, again, too much pain in my ankles and knees. Tried sitting down and going down on my bum, but by the time i got half way down, I was just in so much pain i couldn't go up or down, so I just sat there stuck, upset and frustrated till hubby got home from town to help me.

Its not just that, in fact its not even that really that got me so upset and feeling so incredibly low, wanting to just cry all the time.

Its that stupid pip form that set it off.
Until I filled that out i could quite happily tell myself what I could and couldn't do, I guess ignorance for me (while has to end at some point) was bliss.

How do you cope emotionally when going through the pip form?

I found that with the questions it was asking me, while I do understand their need to ask, it forces me to face reality, it forces me to admit just how little I can do, it forces me to face the fact I'm no longer going to be the workaholic, working 60+ hours each week in jobs I've loved doing so much that I never took time off from. It forces me to face all the things i loved doing are not going to happen again because my body or fatigue won't allow it.

I felt that filling out that form was a real kick in the pants reality check i didn't feel ready to face yet.
Now I'm sat in a new house that courtesy of meds, I don't even recognise or remember half the time. I wake most mornings having no clue where I am, the meds leave me feeling like I've been on a drinking binge and can't remember what I did or said yesterday, when I finally remember something, I don't know if it really happened or if I dreamt it.
Fatigue has me at the stage i have to speak with O.T about the possibility of bedside rails as i keep falling asleep sat up, then I fall backwards bashing my head on the metal headboard, followed by sitting up again and either falling forward head butting the dog asleep at my feet, or I fall sideways almost out of bed. I only know all of this as my husband spends most of the night sat in the bedroom watching me, then propping me up when he says it looks like I'm about to fall out. I'm not aware of any of this, but as he's telling me it is actually leaving me feeling very embarrassed and ashamed regardless of their being no need.

I hate this so much, I hate the loss of control i once had, I hate what the meds do to me, I hate it when people are clearly watching me struggle in town to get something off a shelf or open a shop door and are too selfish to come help me.

I'm sorry this all sounds so "woe is me"
where people have replied in rhe past if i tried opening up "stop feeling so damn sorry for yourself, there are people out there worse off than you".. this is probably the only time in my entire life I've ever really had the chance or opportunity and opened up like this and said how I feel. I'm not the sort of person who shares emotions like this at all with anyone,
but after having to face a lot of facts when filling out that pip form, its left me on a very unexpected downer I can't seem to shake off. It's like I've been convincing myself its just like the flu, couple of weeks and I'll be fine, and now I'm frustrated and full of unexpected emotions that it hasn't gone yet and the pip form brought it to a head that its not going to be gone in a few weeks, and I have to accommodate it. I'm left not knowing how to handle this or how to cope with it.
"You know you have RA when half brushed hair is awesome"

Comments

  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
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    JPH, this reply will be brief, not because I don't care but because I'm struggling a bit myself right now.

    Acceptance is not a one off event but an ongoing series of decisions. Some are easier than others but they don't go away. The more energy we put into trying to hang on to our old lives the less we have for crafting out our new ones.

    You are in a dark place right now. Some of it is due to arthritis, some to depression and some, I suspect, from your medication. If you are sitting up then falling over in bed and unable, in your waking hours, to distinguish between what has really happened and what has not, that's not arthritis. Please see your GP or ring our helplime people. It doesn't have to be like this.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Firstly, (((()))). I can so relate to your experiences after reading your post. I used to think I had found acceptance of my new arthritis ridden life but it turns out it was merely a mirage. I am sorry, and felt such empathy for you after reading your post. I don't have wise words or answers, just some (((()))) I won't say more because I don't think I'm in such a great place mentally myself and not so positive.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Of course there are people who far worse off than you. So what? This is happening to you and that is the major difference. I feel I should remember what stage you are at and what meds you are taking but, being somewhat in the doldrums myself, I can't; I am assuming that these are the early-ish days for you (that, to me, means anywhere between one to five years) and it is indeed a steep learning curve.

    Coming down the stairs? Do 'em backwards, it's far easier because your weight is leaning towards the steps rather than away so should you take a mis-step at least you won't go crashing head first. I have done stairs for years like a three year old but so what? It gets me up and then down and that is what matters - being nineteen years in I no longer care what others may think about what I'm doing or how I'm doing it, they should try being me for a few hours because they sure as stars couldn't cope with it for more than that.

    If you are coming at all this from a healthy background then it must be far harder to accept and move forwards. I count myself lucky in that I've had a lifetime of auto-immune issues and meds (once they were invented) so for me it's more of the same. I admit that things became far easier once I'd forgotten about being pain-free but every now and again I think 'Why me?' For the forum the question is 'Why us?' The answer is always the same. Why not?

    Your words about being so spaced out on the meds is concerning, I hope you are soon able to chat this over with your GP because this is not a good road to be taking. We need our wits about us to help us navigate the day-to-day and to make us less of a burden to those around us. The arthritis doesn't only affect us, its nasty ripples reach out to touch friends and family, who more often than not feel completely helpless to improve our lot. They are not but it takes time to establish what they can do, and possibly the code words required so they understand it's time to step up. During the working week the Spouse might receive a text saying 'It's been a rough day.' He then knows that he will definitely be washing up or maybe even finishing off and serving the dinner. It takes time to establish these routines.

    I have to go now. Keep in touch, us old hands know what it's like and we do understand. It's far from easy living with our various versions of this disease. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • DebraKelly
    DebraKelly Member Posts: 398
    edited 30. Nov -1, 00:00
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    We have all been there.

    I have RA and have had it now for 6 years. I am 38 years old.

    I have accepted my condition, however I still have the odd days where I want to shout and scream "Why, what have I done to deserve this"?

    A prime example of this is last night I was watching the TV and it was an episode to do with giving birth, I was a complete wreck by the end of it as reminded me of having 2 mis-carriages last year.

    The best thing that I found that has helped me is writting a blog.
    I write a weekly blog on how I am feeling and things that I have managed to do that week, when I look back on them it doesn't feel so bad and I have actually achieved a lot.

    The blog isn't for anyone else, just for my husband and myself to read.

    But writting it down is good way to vent your frustration.

    Having a supportive family helps too, my husband is amazing, I don't know how he puts up with me sometimes! lol
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    I really feel for you JPH..and can understand how filling in this form has sent you in decline..it will do you good talking to us and being able to let all this out ..I do hope you fight your way back up again.don't forget.we are always here...
    Love
    Barbara
  • Saabina
    Saabina Member Posts: 17
    edited 30. Nov -1, 00:00
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    I felt exactly the same way. As I was writing it all out it really occurred to me how much my life has changed and how little I can do for myself. How much I rely on other people and the natural concerns of whether this will get worse, get better etc etc

    You're not the only one.

    I've filled it in and sent it off and had the assessment so I am just waiting on the decision now. They should spend a day in our lives!
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
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    How are things now? Any better or worse? I hope you're feeling a bit better.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • JPH
    JPH Member Posts: 45
    edited 30. Nov -1, 00:00
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    Thank you all so much for care and concern, more so as you all have things in your own lives going on too.

    StickyWicket, not today no :( I find that if i am still for longer than 15 minutes or so, my joints all get really stiff, my hands swell and i can hardly bend then.
    I wanted to watch a couple of half hour slots of an American tv show someone mailed over to my husband, so sat on the sofa and can't get up, there is so very little of me that doesn't hurt at this moment.

    I hadn't realised you'd posted again to me, but i did actually come in now specifically to talk to you. A part of your first post queried my meds and about how the meds were affecting me.. i realised where you'd wrote about it not being arthritis thst i'd left out something i should have put in.

    About Jan 2011 i was in an airport, grabbed for my luggage off the moving conveyor belt, turned at an odd angle and tore the fluid sac between the ball and socket in my shoulder.. it doesn't hurtnor start to hurt till a few months later after the fluid has drained away and the ball/socket bones start to grind on each other.

    Not long after i did it to the left one in the January, i did it to the right one s few months later while playing tug with the dog.
    15-18 months of trying various pills, potions, cortisone injections and physio, then after 15-18 months of all that, i get to see the surgeon who puts me on a routine waiting list of 15 months waiting list! He said he'd operate on the left shoulder first as that one seemed worse.

    Over time, no-one checked on my shoulder, my doc just kept increasing the meds.
    It wasn't till i went for surgery that the surgeon saw where the bones were grinding, it had been causing huge bone chips. These, over time had floated down and stsrted shredding away at my chest bicep to such an extent thst apart from a couplewnof fine fibres, the chips had almost severed the bicep!
    2 weeks post surgery, because the damage to the bicep wasn't seen till during surgery, it wasn't on my notes, the physio therefore didn't believe me when i told her, so she gave me advanced excercises. Me thinking, well, shes the physio not me, she must know what shes doing... seems she didn't and the exercises did more damage than good.

    I'm now on 280mg oxycodone a day, diazapam to stop muscle spasms, oramorph and 2 amitriptyline to manage break through pain...

    As yet, i'm still waiting to see the rheumy so not even on any RA meds yet.

    My post, basically saying 'why me?' was as i'd already spent (and still am experiencing) since Jan 2011 in excessive constant and increasing pain,
    and now on top of all of that i'm told the surgeons are finding arthritis in my joints and now thats all adding to the pain.


    Honestly, around five years of excruciating pain 24/7 that i just don't get a break from, which in my shoulders, from reading online and in here, much like having a flare in my shoulders every day for five years, thats how long my husband has been washing and brushing my hair, bathing, drying and dressing me, cooking for me and cutting my food, and at times feeding me as i can't raise my arms enough ... and now to be told that on top of the shoulder impingement damage i already have in my shoulders, i have arthritis in them too ! Ugh! Just never seems to give me a break :(

    And like its not enough to have all that going on in my shoulders, the arthritis is now showing through in all of my other joints too which my doc said was likely triggered from stress.

    It just feels so dang never ending and painful, i'd just like a few days break from it now and then, or be told i don't have to wait umpteen more years for their to be hope on the horizon.

    I'm seeing the surgeon on october 7th so he can see what damage the physio exercises did, while i'm there i can mention about the right one too. Hopefully they won't make me wait another 4 years between surgeries.

    Hopefully now my initial thread makes a little more sense as to why i'm so down and so full of "woe is me" . (Actually, my thread just making sense would be good ;)
    "You know you have RA when half brushed hair is awesome"
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
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    As Sticky said earlier you are in a dark place right now. The PIP form made you confront something which you already knew, but had managed to keep to the back of your mind most of the time. In your case I think it has been made worse by the fact that professionals who should have been helping you seem to have made things worse, which puts you in an uncomfortable situation with regards to future treatment. You say you're not the sort of person who shares emotions, but I think you might find it helpful to speak to the Helpline Nurses(look on the main AC website - sorry no good at doing links) as they well know the difficulties involved in dealing with not just the physical, but also the emotional problems. For what it's worth I think the emotional is far more difficult to deal with as no-one can do it for you - but the right people can help you.
    I would also second what has been said about getting your meds checked as what is happening doesn't sound either right or helpful.
    You will get through this - joining the forum was a big first step - but it will take time, and progress may not always seem like progress at the time.
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
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    Wise words, as usual, from daffy. Just to endorse what she suggests, no links are needed for our AC Helpline people. Their number is at the top right of the page. I'm sorry you're still feeling so rough but I hope a chat with them will help.

    I wonder if, while you're waiting to see the surgeon and rheumatologist, some steps might be taken to make life easier for you.

    You say “if i am still for longer than 15 minutes or so, my joints all get really stiff, my hands swell and i can hardly bend then.” Staying in one position is not good for us. Maybe you could ensure you get up every 15 minutes for a walk round, twiddle your toes and fingers etc.

    “every day for five years, thats how long my husband has been washing and brushing my hair, bathing, drying and dressing me, cooking for me and cutting my food, and at times feeding me as i can't raise my arms enough “. This cannot be good for either of you. We are a very inventive lot on here (Read the 'ideas to make life easier' thread above) and there's a way round many things. My shoulders went years ago and I need my husband to wash my hair but, as for the rest, a combination of Occupational Therapist (Bath lift), Disability Aids shops and change of plans have sorted things.

    My hair is now short and, with the aid of a super long handled comb, I can comb it myself.

    I bath myself with a pad on a very long-handled stick though I often call him in to scrub my feet and back. I dry myself by laying a large bath towel on the bed and rolling round on it. (Pretty it aint but effective it is :lol: )

    Dressing firstly involves limiting myself to the type of clothes I can manage. Dresses went by the board years ago, then skirts. I can manage long-sleeved tops by gathering them on the hand bit of a long-handled shoe horn with a hand at the other end then tossing them over my head (Sometimes completely over so I have to start again :roll: ) The same would apply to short-sleeved tops except that I can't get them off as my method for removing tops is to pull one sleeve over my hand, grasp it between my knees, pull that arm out then repeat with the other arm. Then the good old long-handled shoe horn again to fling it over my head. Blouses are easier. I have a button hook for them. Trouser buttons can be harder so I usually leave my blouse over the top of the trousers to conceal the fact that the button's not fastened. I have a sock aid and can get my shoes on with the shoe horn though I can't always fasten them.

    My everyday cooking utensils are all lightweight and with thick, easily grasped handles. I steam a lot (veg, not personally :wink: ) because it's both healthier and easier. I've had kitchen cupboards with pull out shelves installed. I use an electric can opener and electric jar opener. Being essentially a non meat eater I don't need my food chopped but, in any case, there are devices for this, too. I think, if Mr SW had to feed me, I would be very slim indeed as most of my food would, absent-mindedly, find its way into his mouth :lol:

    Why not have a look at some of the online disability stores and make some shopping plans (though, if you have a local one which you can look round and maybe even handle some of the products, that would be much better.) I find it more helpful to say “How can I do this?” rather than “I can't do this.” It didn't help me with my ambitions to play even disabled cricket :mrgreen: but it has helped me to stay relatively independent and, I suspect, helped to keep my marriage to the lovely Mr SW intact.

    I hope some of these ideas will help.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    It's good to hear from you again and yes, you are right, we all on here have things going on but that shouldn't stop us from thinking about others. I learned very early on that I cannot expect the health professionals who come into contact with me to remember what has been going on and how things have developed. I am one of hundreds they see on an occasional basis and it's in my interests to remind them about things and to ask questions: they live with the theory, I have the groundhog day reality of living with constant pain.

    Like Sticky I have made many changes and continue to do so, but we have to find our own ways. Suggestions from others help, they open our eyes to things we may not have thought about and we can adapt these to suit us. I don't think much now about the things I can no longer do, it's an utter waste of time, energy and emotion to hark back. Looking forward ain't so hot either but it's up to me to make the best of things and I am better equipped now, thanks to nineteen years of steady deterioration, to cope. Everyone deteriorates in life, I'm doing it early is all.

    You may have developed the arthritis regardless of the shoulder troubles and those of us who go on to develop other health issues on top of the arthritis find it easy to blame it for them. We are all in very similar boats which is why we're here, you are talking to the reluctantly initiated, we're all in gangs we dislike, and we have to get on as best we can. Read the threads on here, not just the recent ones, go back a while and I think you will find that you are far from alone with facing this and all the uncertainty it brings.

    Right, onwards and sideways! More ironing beckons, turning our mattresses (with the aid of The Spouse) a shower then a cuppa as a reward for my domestic industry. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • JPH
    JPH Member Posts: 45
    edited 30. Nov -1, 00:00
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    Firstly, this applies to every post i make, my laptop keyboard is malfunctioning so at various points it won't type a certain letter or a capped letter, but will for others, so apologies for the typo's.

    i know what you're all saying, even my husband has said i'd make a good novelist with the weird futuristic dreams i have on some of these meds, most of them i remember in the smalest of detail when i wake up and for weeks after, but the hallucinations have got to go, no doubt about it.

    at least with my body failing me i still had a good head on my shoulders, but the time the meds start affecting my head too, its time to put a stop to it asap.

    i tried making a call to my docs this morning for an appointment, but it seems BT have now got my phone line set so any outbound calls all get re-directed to them, at least we still have free wifi, even though its a bad signal area and th wifi is worse than a dial up connection.
    the only finances we have coming in is the esa once every two weeks, and its basically not covring all the bills, so some weeks, someone i have to pay on the phone and utilities list has to wait. Between fatigue and meds i'm not waking up till gone noon so have to persevere with the pain in the evening if i up in time to go to the want to the morning drop in surgery at the docs.
    When i see him, i will discuss what the meds dosage is doing to me mentally and physically, and that it is urgent something be changed as the mere fact alone i'm likely to fall out of bed at night if i've fell asleep sat upright is completely unsafe for me.

    i know to wriggle my legs, ankles, toes etc every 10 mins or so, so they don't stiffen up, but as i can't lay on my shoulders at night, waking up from spending all night flat on my back means for me, that every morning i'm going to be agony while i un-stiffen.

    yes, it is a very dark time for myself and my husband now, thank you for hearing me out and for being there me! i think at the moment my husbands patience is weearing thin and i can hardly blame him, hes had to take on so much, i just don't feel i can talk to him right now, he doesn't look like he can take much more today :(
    "You know you have RA when half brushed hair is awesome"
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
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    JPH, you must be out of your mind worrying about the debts. No wonder the PIP form caused such anxiety. You must feel as if everything hangs on it. Thank you for being so honest with us.

    Stress makes everything worse in the not-so-wonderful world of arthritis. You and your husband are under an enormous amount of stress. I'm assuming he's out of work. Could he look for even a part time job? Anything that would bring some money in would give him the satisfaction of doing something about it and achieving things. It would also give you both some time apart which can be a very positive thing in a marriage.

    May I suggest you do three things?

    1. Either tomorrow or Wednesday make sure you get up in time to get to your doc's Drop In surgery. Set your alarm as early as necessary to give yourself time to unstiffen a bit, get ready and out.

    2. Contact Citizens Advice for free online help in sorting your finances.

    3. Given that you can't make phone calls, email our Helpline helplines@arthritiscare.org.uk. Do this before Friday as I think they close then for the Bank Holiday weekend.

    These are things which you can do to improve your situation right now. Please give them a go.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • JPH
    JPH Member Posts: 45
    edited 30. Nov -1, 00:00
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    Dr.B is on holidays this week, he's the one i mainly see and prefer to see when poss.. so am due in with Dr. S at 5pm today.

    Dr.B takes time to listen to the symptoms and take the right course of action, whereas Dr.S is more of a 'just tell him what meds you need , he'll write a script, then its basically .... next patient pls'
    Sticky Wicket, thats why i haven't been into see the doc since last posting, was hoping the surgery may have brought in a locum by now.

    At least i'm going in though. i do feel more in control of the 'falling asleep in places i'm likely to fall and hurt myself' now, but still am spilling coffee on myself, so not in control enough to know when to put my cup down yet. Hopefully i'll find out today which of my meds is causing me to fall asleep so rapidly today so can either come off those, or start the weaning process.

    i haven't seen Dr.S in some time, so today may not be as productive as would have been with Dr.B, but i'll go none the less, if nothing else just to sort out whats making me fall asleep like that. i'll also ask if he's able to hurry rhumatology along a bit quicker for me, as both Dr.B and Olwyn, the lady i see in O.T agreed the sooner i see the rheumy, the better i'll be. i think its already been over two months waiting now, so really shouldn't be much longer.

    Hopefully some good news is on its way ... so far its just the inevitable waiting game.
    "You know you have RA when half brushed hair is awesome"
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
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    Well done on making the appointment. How did you get on?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • JPH
    JPH Member Posts: 45
    edited 30. Nov -1, 00:00
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    Hey Sticky Wicket,

    The appointment went very different to what was expected. Dr.S was the complete opposite of his usual self which for me, given why I was there, was a huge help and relief!

    Not being new to forum etiquette, I don't tend to derail threads, so am posting it here ...

    Your last paragraph on the pip thread, about the high doses you and I are on...
    Dr.S was re-iterating that!
    It scared a lot of precaution and safety into me when he told me that as my body has become tolerant of my high dosage over time, it copes ... but, if he took just one day of my meds, it would literally kill him!
    Even hubby said that if for any reason an addict got hold of my meds tray, I'd likely be too late reporting it to the local police and hospital to be on alert, if, like Dr.S, an addict took my daily dose, even though an addict has a higher tolerance than Dr.S, the police would be too late and a hospital wouldn't be able to pump his stomach, he'd be dead before they tried helping!
    That seriously scared me a lot!

    I have seen many on the same meds as me posting on various blogs, but they are on 100mg a day and say how incredibly high their dose is (I thought the same of
    mine at that time, the usual dose is just 40mg for chronic pain) so today I have a new outlook on the meds I take.

    He checked my heart, my pulse, my eyes.. he said he wasn't quite sure what was causing me to fall asleep so rapidly, but it concerned him, looking at his computer screen seeing how many meds, and doses I'm on already, that he was about to add to that.
    So we went through a "meds clear out".
    We basically stopped everything that didn't seem to be working any longer on me, and didn't have withdrawal effects, and slightly lowered the ones I'm to stay on.

    Hes given me something called duloxetine. It's for depression and anxiety. He reckons those should take about two weeks to take effect so wants to see me again in three weeks.
    I am a little concerned about these meds though. When I was on amitriptyline, mine was a low dose for pain, the much higher doses are for depression but both amitriptyline and duloxetine as anti depressants, during the first couple of weeks can cause thoughts of self harm and suicide! Sheesh! for an anti depressant, that doesn't exactly sound like an effect any one taking them needs!.

    I remember my mum (rip) saying years ago to a friend "In my day depression didn't exist, you were just plain pi**ed off at the world".

    The more I think about the side effects of these pills, the more I think "do I really need any of these new issues on top of what I already have"
    also, this issue with thoughts of self harm and suicide, though its not a route I've ever given any time too in the past or present, I really don't need to be feeling now.

    I'll mull that over for a while and decide after the bank holiday if I'm going to take them or not.
    "You know you have RA when half brushed hair is awesome"
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
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    I'm glad it was a good appontment and, yes, that's what can happen with strong pain relief. Very scary.

    Just for the record, I'm not on a high dose of methotrexate but it's a powerful med which requires constant monitoring of the liver, kidneys, bone marrow and other bits so it's dangerous in the wrong hands.

    Your GP has put time and effort into helping you and has asked you to come back so that he can ensure all's going as well as it can. That's good General Practice. There are bound to be blips here and there as your body accustoms itself to the new regime but not all need attention. Some can just be noted and ignored.

    All meds have scary potential side effects but the operative word is POTENTIAL. Manufacturers are legally bound to list them. It doesn't mean we're likely to get them. Every time I start a new med I read the leaflet then put it away. If something goes amiss I consult it to see if the problem might be to do with the meds. If so, I make another appointment with the doc so that we can deal with it.

    My personal opinion is that your GP has spent time, effort and expertise on trying to sort out your meds problem(s). He's prescribed the amitriptylene. You are aware of the potential side effects so, in your situation, I'd ensure my husband and close friends were also aware of them so that, if I started to behave uncharacteristically and in a way dangerous to my health, they could tell me so before it got out of hand. I could then go back to the GP to ask for further advice.

    As I see it we work together with our health professionals. Our responsibility is to try to make their help work for us not to self-medicate. The high dose may well help you over this difficult patch and maybe then your doc will be happy to reduce it. Good luck.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • JPH
    JPH Member Posts: 45
    edited 30. Nov -1, 00:00
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    " just for the record" i'm not now and never have been the kind of person who reads the lables and scares myself to death with all the 'possibles' on it.
    i was a nurse for over 18 years so know what most of my meds do at the time of being prescribed them.
    i just happen to have an issue at the moment taking anything that 'may' cause thoughts of suicide as with the downward spiral hubby and my life seems to be taking now, i've already had those thoughts without the aid of pills, so really don't need anything that 'may' or 'could' or 'may possibly' push those thoughts forward again.

    i am, for the most time hanging on by my nails .. its only hubby and my 2 dogs keeping me here and one of those 3 is at the moment on thin ice..
    thats my personal stuff though and i really don't want to go down that path on here ...

    Dr.S prescribing those was my bad, not his.. i wanted, and waited to see Dr.B .. if i had, he wouldn't have prescribed those for me, knowing me as he does.
    Dr.S makes me anxious, while i'm ok talking to him about general stuff, i don't feel i can talk to him about stuff that touches a nerve.
    Last time i did, i had an anxiety attack in his office.

    i only saw Dr.S now because of the pressure i felt under at home to go see the doc ... any doc.

    This really isn't easy for me to explain, more so as there are areas i don't want to post about on here.. i do know you're all only trying to help,and for that i am grateful. i'm only posting now as i felt an assumption had been made that i may have been the type of person who read all of the meds leaflets taking everything on there as 'will happen' and not 'may'. I'm not. i just have an issue with this, and had Dr.S listened to me, or read what Dr.B had written in my notes, he may not have been so quick (as he usually is) to dish out the meds.

    i didn't reply yesterday as i slept all day so was stiff as a board, then had a really bad night with pains in both leg joints and everything betweeen the joints. Woke this morning to give oscar his insulin shot and wasn't able to move my legs or either of my arms.
    i'm in constant chronic pain, not all of it is arthritis related. i've been in constant chronic pain virtually every day for over four years, once the surgeons operate on both shoulders, which they won't do at the same time, i should then only have the arthritis to cope with..
    "You know you have RA when half brushed hair is awesome"
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
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    At the end of the day we each have to make our own decisions and live with the results, good and bad.

    I opted not to take alendronic acid for my osteoporosis as it can cause oesophageal problems. I can do oesophageal problems in abundance without alendronic acid :roll: so I simply take my Calceos, omit salt from my diet and exercise every day as much as my body will allow.

    There are no perfect answers but all our decisions – and non-decisions - have consequences which we just have to accept and live with.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • JPH
    JPH Member Posts: 45
    edited 30. Nov -1, 00:00
    Options
    Sticky Wicket, i haven't been in for a few days, between pains and o.t visits plus fatigue i've been out of it.... but one thing on my mind was my last post in here, i felt guilty and wanted too, felt i needed too for my own peace of mind come in and apologise to you.

    Sometimes i can be feeling a little - or a lot- over senstive one day, and reading what someone writes to me can be misconstrued.

    i re-read your post while i was in different moods, and realised you weren't having a go at me personally or accusing me of being the type of person who takes everything on the pill paperwork literally... it must have been the impression i gave off, or i should have made myself clearer on my post that it was just those ones.

    You have done nothing but try to help me become more adjusted to whats going on in this new change in my life, and i misconstrued that and became defensive, so i am sorry for that..

    This post has been bugging me since i last logged in so it was something i needed to come in and resolve.
    I shouldn't have reacted or over-reacted to your post, and i shouldn't have read it while in the frame of mind i was in at the time.
    i am sorry, i didn't mean to snap back at you, that is my fault and something i need to work on as part of coming to terms with so many changes and upheavals in my life now.

    i'll air on the side of caution before replying next time and not be so quick to reply or take to heart :)
    "You know you have RA when half brushed hair is awesome"
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
    Options
    Hey, it's OK. No apology needed. No offence taken.

    We are all in pain on here and that can make us all react and over-react at times, not to mention misconstruing things. Add to that the dangers of the internet which is not like a normal conversation. We can't hear intonation or read facial expressions. All we have are words.

    I hope you are in a bit better place now. You do sound better. If so, I hope it continues.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright