Feeling Sorry for myself

ifonly

Hi I have been living with RA for many years so you would think I would now everything there is to know, but I find my self struggling with the tiredness & the pain daily, although I do take pain killers which helps a little. I also have started last winter to get numbness happing in my fingers on cold days similar to raynards disease suffers, im also on Humira which helps, but for the first week of taking it I feel really ill my stomach plays up headaches more aches than normall I just hate taking it because it makes me feel so rough. but then i may feel ok for a week but still with pain but not as bad as with out humira. My consultant seems only interested in my inflamation is being kept uder control and not concerned about all my other ailments with the illness they dont count its something that I have to live with as the humira is working for the inflamation. I just feel I have no life I cant seem to get a job as I limited to what I can do and they dont want to know once they know your ill. I do have some dla but even that is ending soon with people saying that no one will pass medicals when the change happens, Im lucky my partner has a job but on low wage. My children are all that keeps me going. Sorry for the long moan I just feeling sorry for myself, I just want it to go away I had enough.

pinkbritishstars

Just wanted to send you some hugs xxx

dreamdaisy

Oh ifonly, I am so sorry to read this. I too am on humira and although I have lovely bloods and can lurch a little better for six days out of the fourteen that's it. These drugs are given so much hype but they are not always the miracle workers we need or want them to be. Humnira is my third anti TNF and has been the longest-lasting in terms of good bloods but the joint damage has progresses regardless thanks to OA which is there because my PsA went undiagnosed and untreated for far too long. No matter, bridge, water etc, I can't change the past, I can only make the best of the present and the future.

I don't think how long one has had this to cope with means that it gets any easier to deal with. RA is a lurker (like my PsA) and it jumps out to be a nuisance at its choosing. We have little or no say in the matter, alas. I am fortunate in that I am self-employed and thus can tailor things to suit my needs but even so that is a struggle sometimes. I am fortunate in that I am older and don't have children to deal with but again it can be a struggle to manage just me and my husband. I am doing less and less more and more slowly but hey-ho, I can only do what I can do and I won't beat myself up about extra layers of dust: if they offend thee, husband, thou canst shift 'em!

I'm glad you've found us, we know all about the frustrations of living with this disease in all its dirty forms, you are talking to the intiiated. I have to go and start preparing dinner now, it's not due to be eaten until about 7.30 but as I said, I need more and more time to do less and less. Keep in touch and I wish you well. DD

barbara12

Hi ifonly
Please dont apologize for the moan, it will do you good to talk to us and get it all off your chest.
Sorry I cant help with the RA, but I do agree that GPS just seem to treat us has a Arthritic patient and nothing else, it hard enough keep going to see them, but not being able to get through to them that we have other ailments is sometimes impossible
You must write everything down, and go and make sure they listen,they get well payed for looking after you, dont forget that.
And dont forget we are always here to listen .xx

LignumVitae

Hello ifonly,

It sounds like you're having a rough and tough time. Arthritis has a cunning way of making things even worse and getting your voice heard by medics can be a large challenge at times.

We all understand how you feel so please feel free to let it all out on here, we'll give you all the support and help we can. Don't apologise for the long moan, as moans go it was a tiddler and sounds much needed.

Big hugs, LV xx

valval

if had majic wand would wave it for you so sorry it not going great but always feel free to come and share it does help ((())) val

Numptydumpty

I think anyone with this horrid disease has every right to feel sorry for themselves now and then. It doesn't matter how long you've had it, or how old or young you are, it's still just as horrible and hard to cope with.
You have done the right thing joining this forum. You will find the people here very helpful, understanding, caring and supportive.
Take care of you,
Numpty

dibdab

Let rip- here's a good place to have a moan, and the folks here understand :? .

I had a good moan at the practise nurse at GP's this morning when I had my weekly bloods and gold injections, and when I apologised she smiled and said it was barely a moan and coping with all the stuff RA brings I'm entitled to share the frustrations sometimes- I have to admit I left her feeling listened to and just a bit better about myself- though the ***** joints still hurt like hell! :shock:
Hope you get a decent night's sleep and some relief soon.
Take care.
Deb xx

rugbygirl

Hi Ifonly

I can understand your frustration with the GPs. I have just spent months trying to get someone to understand that there is more wrong with me than just not getting on with my meds.

I kept going back to see the doctor and finally I saw one who took me seriously. He ran loads of tests again to make sure that I wasnt suffering with RA as well as OA. Now it has come back that I have Fibromyalgia so I know how it feels to not be feeling great.

I hope that you manage to get some answers and you get the treatment you need,

Take care

tillytop

Hello Ifonly and welcome from me too.

I am so sorry you are struggling so very much at the moment and I completely understand your feelings about your consultants being only concerned with the inflammation levels, regardless of the unwanted side effects of the Humira. I have had to fight that battle on more than one occasion and have been incredibly frustrated and desperate that the docs can't see that it is no good if a drug helps the RA, if the benefits are completely outweighed by unacceptable side effects. I have taken many, if not most, of the DMARDS over the last 17 years and I am now working my way through the biologics and there have, thankfully, only been 3 occasions where the drug side effects completely outweighed the benefits. Humira was one of those which really disagreed with me and it was somewhat ironic that, having managed to keep working for many years, despite aggressive RA, that it was actually the drug side-effects rather than the RA itself which made me so poorly that I had to stop work. I had a huge battle getting the docs to believe that the Humira was responsible for most of my additional symptoms and I really didn't want to stop taking it without the support of my consultant because I was worried that would ruin any chance of funding for a different biologic. Eventually, the message came back via the rheumatology nurse that "well I don't think it's anything to do with the Humira but if you want to stop it for three months to see what happens then go ahead". And guess what? within a short time the majority of my symptoms disappeared completely and it has now been documented on my records that the Humira caused the problem.

I fear I may be rambling now, sorry. What I think I am trying to say though is that, if you feel that the Humira is what is causing your other health issues, I would strongly advise you to talk to your consultant about stopping it for a while to prove the point. You may have a battle on your hands and you may find yourself being told, as I did "well you know how bad your RA will be without it" . But my answer to that is - "yes I do know, so the fact that I am prepared to stop it, should tell you just how ill I am feeling with what I believe to be side-effects" (I didnt think of that answer at the time though but it's what I would say if it happened again). If you do go that route, and your non-RA symptoms improve, then you will have the ammunition you need to discuss alternatives with the consultant. If they don't improve, then you will have the ammunition to ask for further investigations to see what's causing them. After my Humira debacle, I am now on Rituximab (my third biologic) with no apparent side-effects so far. The jury's still out on whether it's going to help the RA though but It's known to be very slow acting so I'm trying to be patient.

I hope some of my ramblings are helpful. But if not, please know that I've been there, so I do understand.

Thinking of you - and please do let us know how you get on.

Tillyxxx

stickywicket

Consultants are sometimes only interested in their own special area. A rheumatologist should also be interested in potential side-effects but yours doesn't seem to feel these are relevant. My own first port of call, in such matters, would be my GP. They tend to be more concerned with the general picture and, if yours feels that your problems are humira-related, he/she may well be willing to help get this through to the rheumatologist. However, there is no quick fix. The meds only do so much at the best of times. Some things are with us for the duration.

Soretoe2

I just wanted to add my sympathy and complete understanding. As a veteran of nearly 60 years with RA/OA and nerve damage and several other conditions that I get very fed up with, I am with you all the way.
The only way with with the medics is to keep plugging away. Do not give up, it's their job to help you and they are paid an enormous amount to do this.
Go back and have a chat with the nicest gp in your doctors/health centre about how you are feeling, you never know there may be something else that can help you feel better.
Try not to worry too much about the DLA. I had been on the higher rate for years, having had two home visit check ups from doctors during that time (not technicians they have now). Out of the blue I had a letter demoting me to the lower rate. No medical, nothings changed. In fact I've had several surgeries rcently and can barely walk at all now, as I get older am significantly worsening year by year.
I have heard from people who have already had their medical check that it's easing off a bit on the get rid of the lot of us bit.
Several of them that were reduced as I was, have been reinstated and had it backdated as well.
So I'm hoping that this will happen to me. If not I am going to appeal.
Nearly all appeals win thier case, so it is worth pursuing if you are turned down.
I hope that you feel better soon. I always try each day to find something that makes me smile, a tickle from my grandchildren, my garden tree flowering or as it is today tuning red and looks like it's on fire. A tv program that makes you laugh. A nice hot coffee and heat pad on my back! Words are never enough but the lovely people here are aways available to offer sympathy and sometimes a virtual cup of tea!
Good wishes, Joy

tillytop

Hello peeps

Having just revisited my earlier post, I just wanted to say to Mig and anyone else new to Humira that I am really sorry if I worried anyone with my Humira tale of woe! Although it disagreed with me, I know I was just unlucky. I have no lasting negative effects from it and, for the two years I was taking it, it really did help my RA hugely. I wish I had left the drug name out of my post cos it wasn't really relevant, but by the time I thought about it the "edit" option had disappeared. Sorry.

Tillyxxx

nicetomeetu

Hiya,

When I read your post it reminded me of myself. Arthritis has been getting me down lately. Medication takes edge off the pain, but its no miracle cure. Fatigue has set in and I didn't know who to turn to or where to go, that is why I joined here. It's touching how supportive good people on here are, giving up their time to reach out to one another.

Hugs ((((((())))))))))

tillytop

Hello nicetomeetu - and welcome.

We are a friendly, knowledgeable bunch and you will be made very welcome.

Tilly xxx

ifonly

Thanks for all replies, as you all know here its so hard to live like this sometimes, I can cope with the pain sometimes because its almost become part of who I am but the fatigue is so bad, my partner sometimes gets mad because he’s starting to say I’m dim or in world of my own half the time. But its just this tiredness that comes over makes me feel I’m in a walking dream. I forget things more, do things slower. I wonder whether I also have what other people mention they have Fibromyalgia, I’ve looked up the illness & I have everything that’s on the list of symptoms. I must stand up to my consultant more as I feel sometimes at the clinic its like being on a factory conveyor belt rolled in & rolled out, He threated me once because I missed my regular blood test, that he could stop treatment If i didn’t abide by the rules & I think that scared me that someone has the control of your life in there hands. As some others I was 28yrs when RA started and it took 1yr & half for them to believe it was not all in my mind it was such a bad time I didn’t want to wake up anymore now 44yrs, I’m starting to feel the same, time is running out in years & I feel I never had any life at all.

Thanks for replys

Wish you all the best of health

Nicchick

I hate the fatigue too and this seems to be the part that others struggle with, they can see a limp or stiffness but the pain and fatigue really are invisible. I fall asleep up the dinner table so often now that I'm famous for it!

I laugh it off but it means that I'm not really living life they way I want to and indeed should.

Before I was ill I had a great job that I loved but I've had to change the way I work and although I am doing something lovely now and it was a great buzz having a book published I miss my old life and the money I used to earn...

My positivity reserves are low right now and that's making me very frustrated.

Nic x

dreamdaisy

The fatigue is so draining, we can sleep and sleep but the nature of the sleep is such that it doesn't refresh or revive us. That is hard for those without this disease to understand - they nod off and wake up raring to go. Lucky s*ds. I wake up raring to go back to sleep again. :roll:

Keep in touch with us because we do know what this is like. The constant monitoring is a pain but a very necessary one: I had fortnightly bloods for years but they proved their worth when things went wonky with one of the meds. The docs are trying their best and we have to play our part too. Dammit. Take care. DD

katieaitch

i am soooooooo sorry about what you have to go through! i hope you get better. dont worry about moaning! i am worse than you. it is horrible for me to say such things to my mum but i get so angry and its hard not to. i feel like a massive bully once i have, but i dont have the guts to apollogise because i am a beast.
i moan at my mum as she gives me the injections. i say that she is trying to hurt me even thouigh i know she is not. i mus be the worst child in the world! i am sorry to her i always feel sorry for myself. sometimes i think everyone woul be happier without me here :!: does anyone understand? i just hate they way people stare.....

bubbadog

I think the emotions we ladies have to deal with are hurrendous, if we're not laughing we're crying, we can be happy one minute and angrey or furious the next (when we're like this stay out the way!) Our mood swings when we're hormonal are all over the place. The same when we are tired our mood swings can be up or down like the flick of a switch. And it's all down to Arther! Pain can make us moody if it's really bad we can be angrey and snap at people usually the ones who are trying to help us which isn't fair a lot of the time, but they understand which is lovely. I know my OH always forgives me when I've been shouting and screaming at him. I've even thrown a plate of food at him when I was in pain!

Loulou11

Can I join in the moan fest, today the only part of me that doesn't ache is my ears!! And I'm sooooo tired. I hate feeling like this, there is so much I want to do but I can just about keep my eyes open. I seen to eat loads of chocolate and drink coke just to help get through the day! Sorry to go on.