In so much pain today just want to go back to bed

theresa4

Well her I am doped up but pain dullers seem innefective today. Im sat with tears in my eyes managed to limp around the park with the dog my hubby made good use of the chukka so my dog is tired as we couldnt go far but at least ive had some fresh air.
feel really down today everything is swollen my scalp is hurting (well everything from scalp down is hurting really) been trying to take my mind off me by going through posts on here but even typing a few lines hurts. Im so sick of this is this my life never knowing whether I can do something one day to the next to be in so much pain despite so called pain killers and feel so wretched.
On the upside now 4 months since last biologic and nearly 3 months since my last what ewas monthly infection.
Next month I see rheumy again but I dont know what to say anymore. I dont want biologics as they make me feel run down and I get at least monthly ENT infections. But I want to be better right now I cant function Im either dopey or in agony. its not fair its really not fair why me.
Im sorry just feel so horrible right now. Im 39 and on the scrap heap. actually noone would want my scraps either.

Sorry to be so miserable
Theresa x

dreamdaisy

Pain killers don't kill the pain, they dull it, is all. If you can go back to bed then do so, sleep if you can, then hopefully in a little while you may feel a little better/brighter. We all hit these low times but they do pass. Take care. DD

Poppyg1rl

Hi Theresa,
You poor love, you sound in so much pain and quite rightly, so low.
You're not on the scrapheap lovey, you're in incredible pain and it's bloomin hard to function when you're suffering.
Could you give the helplines a ring Theresa, I really think you need to talk to someone honey. It helps to get it all out it really does.
I know what you mean re another anti TNF, I'm trying enbrel once my lung returns to normal after a bad reaction to Humira, I'm not thinking about the negative side of it, I can't afford to, they will find something that works and it will help control the PA.
Please keep posting Theresa, rant all you want, that's what we're here for.
Thinking of you, sending positive thoughts your way, PM me if you want to talk, can't promise any fantastic insights but I'm a good listener.
Take care x

elnafinn

Dear Theresa

You sound utterly exhausted and fatigued, I agree with Poppy that it would be a good idea if you could phone the helplines. I think hearing a sympathetic voice on the other end of the phone would help you greatly. On the forum we can only do so much with sending you love and hugs and giving our support but today I feel you need that bit more.

Once you get through to helplines, they will give you all the time that you need.

Sending you courage and energy to pick up the phone,

Love
Elna x

theresa4

Hey there DD Poppy and ELna
Thanks for your replies, my pain dullers are finally taking a little effect they are the slow release Dihydrocodeine so take forever to kick in but the others knock me for six but dont last as long I do have both types in case I need a fast fix though. Bless my GP I told him he can never leave the practice or I will hunt him down.

I have to look after my granddaughter this afternoon for a couple of hours as my daughter has a long awaited scan (she is prone to ovarian cysts) so she cant really cancel it and theres noone else to care for little one. Shes taken her out to tire her and hopefully she will go to bed with me when she gets here(shes quite partial to her granddads pillow Im laughing cos she sweats loads when she sleeps)

Then a hot bath and I might manage my evening out with sis in law at school quiz night for a couple of hours. were getting a lift there and back and I should be well and truly doped up by then (quiz night ooh er :shock: :roll: not sure our team is gonna make sense tonight)

Im not that bothered for going but she insists I need to get out and bless her she bought me a ticket and promised me wine
Just hope the bath helps me move a bit dont want to let her down.

thanks again for your replies Ive had a good cry and feel a bit better just getting it all out. still p****d off that I got this too and a real horrible part of me wishes my viscious sister had got it instead shes always been a little cow yet I get all the crap genes!! teach me to be nice all time I suppose. :roll:
How naughty of me I always feel guilty for having such cruel thoughts but doesnt it make you wonder why the dice rolled the way they did

valval

well from time to time we all feel the same way but then i read the lincs for the little ones who have it and feel rather me than another little one how would they cope with all the pain and stiffness that goes with arther so if we could get rid of it for one and all then that would be great. down days are awfull and bed the best place some times exhaustion just to much to cope rest up enjoy your night out val

theresa4

HI Val

I couldnt read those posts i couldnt cope with knowing how horrible it is for someone so young when Im whining and I was 33 when I started with it. With 4 kids and a grandchild I should feel blessed not whining I know Im lucky in some respects. Its just the loss of a life (mine) all my plans, my career, dancing etc (and my heels) and my ever expanding figure that was once the envy of many now is a laughing point of most. The guilt I feel for my youngest daughter coming up to 16 soon she hasnt had the quality of care from me the others did at those tender years. I remember saying when im 40 shell be 16 and I have more freedom to do things yeah right. The fact I struggle to hold my granddaughter luckily she is walking now (and I dare say much better than me) so I can hobble around with her on my tails. She loves rough and tumble but that is something I cant do and I am fast becoming boring to her as she becomes more able and the able bodied in our household are more interesting. Still she loves her afternoon sleep with grandma but they wont last for ever either.

I realise how selfish I sound and there are many in worse situations and younger than me but I just havent got the empathy I once had nor the patience.

theresa4

Well pain dullers have helped me sleep have been restless all afternoon. Luckily my son came home so he looked after his neice as she wasn't tired. I'm in so much pain so going to try a hot bath and more dhc tonight is not looking good:(

suzygirl

Hi, this is a short reply from me as I am not feeling too good today. I am 39 and did go back to bed for 3 hours today. I am up now, but might as well be in bed, for the use I am.

I admire you for going out tonight when you feel so unwell, evenings are out for me most of the time now. I don't think you are selfish for moaning, at all. You are greiving for your losses. I had children young, and expected to be developing my career now, I have been told I will never work again. It is disheartening, when life seems to be passing you by.

People don't understand how it is, thats why the support on here is invaluable.

Let us know how you get on.

valval

must admit i spent a year not going out it was to painfull and not worth the day after arther bites hard and will not let go the meds can help if your are lucky i am so life is so much better i wish the same for all i do not know how long it will last but will make the most of things while they last when days are dark and full of pain life is far to hard and then we need each other to get through have great evening hope you win the quiz val

theresa4

I'm not sure I want to go at all. The pain isn't going down at all despite heavy pain killers. I know it will just make things worse going out but my Sis in law is all geared up And keePs saying it's only 2 hours and taxi there and back and sitting down there. I hate letting people down to my own detriment. I've had my hot bath and am still not dressed not sure I'm going to fasten my bra yet :roll:

valval

theresa4 wrote:

I'm not sure I want to go at all. The pain isn't going down at all despite heavy pain killers. I know it will just make things worse going out but my Sis in law is all geared up And keePs saying it's only 2 hours and taxi there and back and sitting down there. I hate letting people down to my own detriment. I've had my hot bath and am still not dressed not sure I'm going to fasten my bra yet :roll:

to be honest if it was me would say sorry but not up to it there is a chance that when you get there and your mind is taken off the pain you might feel a little better but only you know if it worth it hugs val

theresa4

Well I went had a laugh and fell over and the pain so bad I can't walk but hey such is life stay in bed for a while now x

bubbadog

Hi Theresa, I am so you are going through such pain at the moment, don't you feel bad about saying why me or wishing it on someone else. I am 37 and when my pain is really bad I have a couple of bed day rests to help with my energy, let my body have a rest and they say sleep is good for repairing the body. I live day to day as I never know how I am going to be. Or if other people are involved with going out or days out we pre-warn incase I'm not up to it. We are lucky our friends and a couple of relatives are really good. The others who moan or huff if I have to cancel I stick two fingers up to them!! Because they are lucky to not being in my shoes. If you ever have another really bad day or days like what you have been suffering with over last few days you should ring the Arthritis care helpline, I have done in the past and they are wonderful people so kind and great listeners. And they gave me some good advice. But remember you are not alone and you have great friends here we are all here for you if you need us.Hope you feel alittle better soon. Amanda, (bubbadog). xx

theresa4

HI Amanda
Thankyou for your reply, I have just got up as all the pain relief cumalative effect knocked me over and I just couldnt come round this morning which isnt such a bad thing as I was still wishing for sleep at 2am.

I know im just having a bad flare to go with my day to day pain but its just wearing me down. How people have gone on for 15 years when my puny 6 years is wearing me out. I feel really pathetic, useless, burden, waste of space and air. We normally go out on Friday nights to our local for a meal with our friends otherwise we would be reclusives only seeing family I hate cancelling tghat for this reason as my hubby works 17hours per day to pick up our construction business due to the bad economy and is doing really well but hes exhausted and our friends are a great way of relaxing for him. IF I cancel he doesnt go feeling a bit 3rd wheelish so I go regardless of how I am and my local is used to me struggling in, limping, hobbling looking disheveled and they never say anything (at least to my face) We get a great table and chairs offered to us by anyone seated there and I sit there for the duration of our pub meal red wine then hobble back out to a waiting taxi or our friends give us a lift. (in my hey day it would take 3 minutes to walk there all up hill too).
I think tonights a chinese in as Idont think I can manage anything so Im gonna feel guilty toninghty.

As for family its my inlaws, they dont understand and only one orr two try, for a few years weve had many 18th and 21st which are heartily celebrated in our family. Unfortunately I was ill for my two nephews birthdays in west midlands so although I travelled there I could not manage the party and for one I slept in the car with a chest infection and the other I ended up staying at the hotel. This all because my other sis in law (the mother of the boys) sees my RA as a few aches and pains and my subsequent chest infections as a bit of a cold. Despite my crying and near collapsing in front of her. I know I need to just say NO but its not that easy as I will then be ostracised for not bothering. You know the type oh my friend has arthritis and shes ok, you should take this natural remedy it cures it........... etc.. :roll: I sent her the spoons theory but I dont think she read it. typical.
I had a nice suprise when I got up my choc tasting selection had arrived and for a change I had first dibs yummy.. normally my hubby opens them then the kids get in and Im last despite me paying for them :shock: but he thought it too early but no way its chocolate
Anyway think ive gone on long enough you must all be sick of hearing me whinge
much love and thanks again for your support

carola

Ocht, so sorry to hear about your pain and your frustration.

I am the same age as you (40 yrs next month!) and this time last year I too thought I was on the scrap heap at a young age. Thankfully I am improving. I don't know all the ins and outs of what you are having to cope with however I really hope that in time it will all come under control and that you will be smiling from ear to ear.

And, if you want to go to bed then go to bed if your situation allows.

Thinking of you, Carol

theresa4

HI Carol
Im 40 in August.

I go through phases of ok mediocre and sh** at presnt its double sh**.

To update you :I was on my 4th Biologic trial a few months ago but had a reaction to it( I have alot of allergies and sensitivities that increase if I take a break and restart and I had 2 months of chest infection at christmas so couldnt have cimzia then I had reaction when I did) so had to come off it just staying on MTX. Im seeing the rheumy next month but Im unsure what to do I was supposed to start my 5th bio treatment this month but they decided that I wasnt bad enough (my steroid depo was still in effect) so cancelled it. They also had concerns as on bio's I get recurrent ENT infections. Ive tried all the DMARDS with no success except MTX which gives mild relief but trust me mild is still some (when I dont have it I know about it ) In the meantime just on MTX I realised I dont feel ill/rundown despite being tired and in pain since coming off biologics nor have I had a monthly ENT infection for 3 months. This makes me (and my GP) wonder if Biologics are for me. Im lucky to have tried 4 but they havent worked or Ive been sensitive to them. Im going to ask for a break for 6 months and an increase in mTX to help and of course a depo steroid in my backside :shock: and see how I feel about them after a break. Hopefully they will agree to it as r ight now despite being in much pain liumited mobility and exhaustion I dont feel ill and its quite nice not to have that added to the mix.
Im getting used to the idea that not much is going to change and my life will never be the same and Im not imagining all of this, I just need to mourn the loss of able me and embrace the new much less abled me. Its that easy :roll:
Last night my granddaughter followed me into the kitchen she overtook me at great speed running past then waited for me to catch her up :shock: shes only 11 months. My daughter was in stitches and I had to laugh too Its not all bad I suppose.

Thanks again for your support

dreamdaisy

The inner you has not changed. The outer you has, but not the inner part, the essential part. You are the same person you have always been, but it is easy to lose sight of that as you try to adjust and adapt to the stranger you think you are. DD

theresa4

dreamdaisy wrote:

The inner you has not changed. The outer you has, but not the inner part, the essential part. You are the same person you have always been, but it is easy to lose sight of that as you try to adjust and adapt to the stranger you think you are. DD

I dont know DD Im alot more bad tempered than I used to be, much more selfish, less patient, certainly less child orientated than I used to be they frustrate me now rather than enjoyable. Im not sure I could ever be the same again. I feel different, in temperament, intelligence (although thats prob the pain dullers) less forgiving than I was and a bit less of a pushover (I suppose thats a positive). I dont like myself much at times as I feel Im being nasty

dreamdaisy

I am certainly less patient than I used to be, yes more tired, yes more grouchy but all that is entirely due to the pain. The first thing we have to learn to handle is the pain and once that is done other things become easier. I tell Mr DD if my temper is shorter than usual - that's only fair I think (although I am not one of life's exploders anyway) but it's wise to warn others of increased tetchiness, that way they may understand a little better.

It takes an age, I think, to adjust to the restrictions and curtailments that arthritis can bring. The condition itself fluctuates wildly which does not help, one day we can manage something, the next we can't. Mr DD and me no longer book anything too far in advance: I cannot guarantee how I will be so holidays and trips out are last-minute affairs now. There are other problems too, all caused by my arthritis, but they are for me to deal with and manage. It isn't easy but it's my problem, not his or my mum's or my friends'.

The inner me is much as she has ever been. My basic character has not changed, my temperament is roughly the same, but then I have a lifetime of dross behind me, perhaps that is a difference. If this is your first bout of illness then yes, the adjustment must be huge, the shock of a continuing condition, which has no fix, is deeply, hugely unpleasant. But I reckon you will come through this, you will find a strength and resilience you didn't know you had and things will improve. We just don't know when. DD

suzygirl

I have to admit, that one of the more unpleasant things for me, is the person I have become now. I am alot more grumpy, stroppy, frustrated and short tempered than before. I don't feel it has brought out the best side of me at all.

I would love to be a serene saintly person smiling beautifully at everyone. Instead I am snarling beast, seething with frustration, in between sobbing for my losses.

I would love to think I am still the same inside, and its only the outside that has changed.

Yet, I haven't had it half as bad as you Carol. You are doing well, I think to be still positive. I hopeyou have a lovely bank holiday weekend, lots of relaxing.

Take care

tillytop

Hello Theresa,

Just to say that I am so sorry you are struggling so much and that things are so difficult for you.

In terms of "what next" it sounds as if you have made a decision to give yourself a break from the biologics which is what I have done for the past six months. No, it wasn't easy, but it did give me some breathing space. I don't know if you have taken or are currently taking steroids and, given my recent major downer caused largely I think by big doses of infused steroids, what I am about to say might sound a bit strange. But, during my six month break from biologics, having oral steroids to prop up the mtx made all the difference because I felt I was in control of what I was taking and could increase or decrease the dose as appropriate, rather than having to rely on Depo steroid injections which may or may not work and which can only be repeated every so often. I know the docs don't like people being on pred for prolonged periods but, if it helps to get you through I wonder if it's worth considering.

Thinking of you.

Love Tilly xxx

theresa4

Hi Tilly
No Im not on steroids oth4er than the depo my clinic is dead against steroids unless desperastrely necessary.

I think Im goign cold turkey :shock: but I just feel Ive had enough of biologics. pleasde exuse bad spelling mix of pain relief and vodka Im afraid.

I fell over in the pub tonight on way to the table so embvarrassing and I needed my eldest daughter to cut up my food for me as my hands couldnt manage it. My youngest sat opposite saying mummy dont cry as I was tearing up anmd fighting the tears back. I love my family they are being great but I hate my life right now Ive been so embarased I dont know what to do.

tillytop

Hello again Theresa.

I wonder how they define "desperately necessary" cos I reckon you are there! I really don't think the hospitals understand sometimes just what people are going through! Without the pred I wouldn't have managed my 6 month break from the biologics which was just so necessary for me to let my body try to recover from the Humira related probs and for me to get my head round "what next".

I am so sorry you feel so very desperate Theresa and I can completely understand why you do. When you feel like you do, it feels as if there is no way forward and that's an awful feeling I know. BUT, you have made a key decision, in deciding to give biologics a miss for the time being and that is not only a brave decision, but a positive step forward, although it probably doesn't feel like it at the moment. I can't remember when you said your hospital appt is but hopefully not too long now.

I don't know what I can say to help Theresa, but I am thinking of you - and we are all here to support you as best we can and we do understand.

Love Tillyxxx

dreamdaisy

If you can avoid the pred, do. I had the long-term effects of them spelled out to me in no uncertain terms and that is why I will come off them this time, no matter what the PA throws at me in terms of flares etc. I have had them for over five years, never a dose bigger than 20mg for a maximum of five days but the cumulative effect . . . . . plus the inhaled ones for the asthma . . . .Even I am bothered, and that says something.

I know you felt very self-concious about having your food cut up for you but I bet a pound to a penny no-one noticed. I reckon we are not as visible as we feel - you felt perhaps that there was a huge searchlight beaming down on you but I am sure nobody noticed, and if they did they would have felt compassion. If this is becoming an issue (it is for me from time to time) then when we are out I order pasta, or soup, summat soft and squidgy that doesn't need two lots of flatware to be used! Spoon dinners are a useful compromise.

You are fighting a dreadful battle. This disease is taking your strength, energy, dignity, the unfairness of it is breathtaking. But I still maintain that the old Theresa is in there somewhere, waiting to be re-discovered.

theresa4

Thankyou Tilly

The problem with my rheumy is that they are the head of rheumatology trials so have an agenda. My rheumy was lovely at first but the further down the line I go he has become disinterested in me. Lovely feeling Im costing them alot ofmoney but due to not responding to drugs or having reactions to them (as I said before I keep getting new allergies and intolerances to foods, cleaning products, drugs..etc... ) I have cost them a fortune of their budget and it hasnt paid out. They will probably reject my idea and pull me out altogether from bio trials they are already thinking on that line.
Well Ill see 14th June Im dreading it, I have a friend who has terminal sarcoidosis Im hoping she is well enough to come with me as she is very eloquent and forceful and has no problem in taking over if I turn to jelly, but it depends as her illness is similar to RA it comes and goes in severity.

HI DD
Thankyou you describe my feelings so well I sat here laughing at myself sat in the pub with the searchlight above looking for me. as always you make me see the bright side of a crappy situation.
I cant eat alot of things from the menu due to my food allergies coming back since off cimzia so soups, pasta etc.. are no good for me I can have chicken or salmon and I was a bit sick of salmon so tried the chicken not realising how bad my fingers were feeling. I may have to stick to salmon when out. :roll:
as for steroids Im loathe to have anything other than the depo steroid for my bottom as I already have enoughb weight on me and steroids would just make that issue worse and I would feel even worse (still mourning my pre RA figure)

Thankyou so much for your support and making me laugh DD

Much love