feeling desperately sorry for myself - warning: long!

evabuk

I seem to do nothing but whinge on here, but am feeling so low today I need to let it out somewhere people will at least understand.

I've got OA in my cervical and lumbar spine - the current problem is with the lumbar bit. Degeneration in disc L 4/5 plus facet joint arthroses in L4/5 and L5/S1...have already had one lot of facet joint injections in these places, which did nothing.

So was referred to pain specialist (aneasthetist) who did some different injections last Thursday, one into the sacro-iliac area (where I actually FEEL the pain) and also an epidural. So far, I can't feel any benefit, an although I was told it might be a few days before I felt any benefit, I'm getting more and more depressed about my situation.

I'm already on a huge cocktail of drugs, including MST and oramoprh, as well as a fairly high doseage of diazepam (not related to this back pain specifically) which I had recently started to taper and get off...very nasty drug once your body becomes dependent, which mine has.

I feel like I'm running out of options. I know I should be optimistic, things could still turn around and these injections could work, but I have a nasty feeling that no-one really knows exactly where this pain is coming from, and how to deal with it and that they're working in the dark.

My consultant has also suggested Lyrica for me, which I'm really not keen on as it does not combine well with diazepam (valium) and could really mess things up for me.

The worst thing is that the constant pain, which is only barely controlled by the drugs, and the drugs themselves are having a dreadful effect on my emotions and thought processes...I can't think straight and am all over the place.

My partner (who has been extremely supportive thus far) shows very distinctive signs of becoming totally fed up with the whole situation and me. I can't blame him, he's been having to do almost everything on his own (shopping, etc) although we don't live together he's here every night.

Last night, we had a huge row which ended up with me in floods of tears, because he'd bought the wrong paracetamol tablets (the "plus" ones with caffeine in them - I can't take caffeine) AGAIN. He bought them on Friday, I explained why they were wrong, and he went and did the same thing again....just didn't read the label and didn't work it out that paracetamol PLUS meant they were different....

but it was all my fault, and he really went into one, to the point where I just felt completely alone and afraid to ask him to do anything for me.

I feel as if I'm losing his support, which I desperately need, because he's just had enough.

I feel as if I'm really losing the battle today, fear the future, how am I going to cope with this pain, Im already on the strongest painkillers available and they make me feel awful as well as not really working that well.

Sorry to have gone on like this, I've nowhere else to go, no-one else knows what it's like, and now I feel as if I've got to put on a brave face in front of the one person who is suppossed to be on my side.

I know lots of you on the forum are even worse than me, physically, and even than makes me feel guilty. Rock bottom is my place today.

sorry for depressing everyone.

annebr

I am so sorry to hear you are feeling so down. I am sure your partner understands and he probably feels helpless that he can't help you with our pain.

I am sorry I can't give you any advice about the pain management, hopefully the injections will kick in soon. But I am thinking about you.

Hope you feel better soon.

Anne xx

elnafinn

Dear Eva

I am so very sorry to hear how is for you at the moment. Why don't you give the helpline a call? I really think you need to talk to someone. I have never called the helpline but know people on here who have and they have found them to be very kind, understanding and will talk with you and listen for t you for as long as is necessary. It is confidential. The number is at the top of the screen.

Lots of love
Elna x(())

valval

hi sorry u r feeling like this i can understand how hard it must be for u . give him old packet to take with him men just think different to us they have different prioritys i bet he feels that he does not know how to cope with things or what to do to help u. try talking to him i know it hard but u must both comunicate with each other if u r going to have a relationship find some one to talk to and good luck hope u both manage to sort it out and have great relationship together

lindalegs

Hi Eva,

So sorry you're feeling low

The problem lies in that your partner can't feel your pain and a hard fact of life is that sympathy is only short-lived.

In my early days when my children were babies, my hubby was rewiring the house at the top of a ladder and one of the boys was crying upstairs - he asked me to go up and sort them out for him. I burst into very noisy tears, thinking he doesn't know how painful this is for me and what he's asking of me As I climbed the stairs he shouted from the top of the ladder for me to stop and he just calmly and very sadly said "Have you ever thought how it makes me feel when, if ever, I ask you to do something you cry, like this?"

That one sentence turned my life around and made me realise my pain is my own and I mustn't make those I love suffer as well.

I'm not trying to make you feel guilty, you don't need that emotion on top of the others - but I think what I'm trying to say is I understand you're in so much pain and you don't know where to turn to but please try not to make your partner unhappy too, he sounds as if he's being very supportive.

As Elna says contact the Helpline and talk to someone, I know people find them very Helpful.

Hope you feel brighter very soon.

Luv Legs

janie68

It sounds pretty rough for you both.

Is there anything that you can change to make a little easier for you both/

Perhaps have your big shopping delivered every so often, send out your ironing, have family help you with cleaning or any practical things.

I bet you dont get any time to be a couple as such, so maybe you could arrange some 'you' time one evening, this would help to reconnect as a couple. and do something nice.

Good luck

Janie x

debatat

Hi Eva, sending you a cyber ((( hug ))). It is horrible when the pain seems unrelenting. It can be tough on partners as well as they have to see us suffer and feel helpless. I must admit like lindalegs I try not to let my family see my pain or complain as they already have to do extra for me. I always try to be cheery and positive. It isn't always easy to do this day after day. Maybe the new drug Lyrica would make things more bearable for you.

I wonder if it is worth chatting to your gp for a bit of support and maybe a meds review. If the lowness persists you may need to address this. I would give the helpline a call, they might give you some coping strategies. I hope you feel better tomorrow, maybe the injections will kick in. Try and relax, watch a movie or read a book to take your mind off the pain.
I have just read your other post, have you had bloods done lately? I was wondering about the weight loss, you could have something else going on?

Deb x

elnafinn

Hi Eva

I feel a little like you, disappointed and worrying somewhat about what is the next step for me as the injections I had in my lower spine, think in the same place that you are having trouble with, has not appeared to work either. All was good for 5 days until I unfortunately slipped down three of the stairs at home on my butt and from then on the pain has got increasingly worse and it was not until 3 days after the "fall" that I realised it must have been this that triggered off the pain. Now it is there practically all of the time, to a greater or lesser degree - I would say worse than BEFORE the injections. :shock:

I am dreading seeing my consultant on 18 September to tell him my tale of woe. :oops:

I am not in anywhere near as much pain and discomfort as you because I can get on with everything that has to be done so my hubby notices no difference really there but he does realise and appreciate that the jabs were no miracle cure and that I am in pain. I feel he is a little worried about the situation for the future too for him as well as me! ie he may have to do more and up until now he has not really or not for any length of time. I do sometimes force myself to do things,wisely or unwisely but that is the person that I am.He does tell me off occasionally but he knows I am stuborn and my way of thinking is at least if I do it, I know it is done and I hate giving in to all this.

Love
Elna x

josiec

HI, I can add little practical advice as the people before me have done that extremely well, but I wanted to add my best wishes and also to say do not apologise on here for how you are feeling - we all have these days (goodness knows, I do!) when you need to let things out. As others have said, please consider phoning the helpline and/or contacting your GP for further support.
Take care, Josie x

evabuk

thanks, everyone, for your replies and support and advice. It really is very much appreciated - and I know there is nothing anyone can do.

I've tried explaining to my partner how I'm feeling, and how much I DO appreciate all the things he does for me, but like many men he's not very good at these kind of discussions and also, as some of you said, just doesn't know what it's really like to feel like this all the time - and drugged up to the eyeballs with it.

Perhaps he's had time to reflect today, and we'll see how he is when he comes over tonight. For me, any emotional disturbance of course makes any physical pain worse...

I've talked to my GP quite a lot about my situation, and he's been very good, but I know if I go and tell him about being so depressed he's only going to try and push even more drugs on me, and I've already got enough to be going on with.

thank you all so much for listening, this really is a great community.

hugs to all
eva xxxx

eckstardeluxe

Firstly Eva, you are not depressing everyone, just wanted to say that.

I understand your pain, I have end stage OA in lumbar and sacral area, spinal stenosis and 3 bulging discs. Without medication I am in complete agony and even with it I can still have horrendous stiffness and back pain.

I think you need to go back to your Dr to discuss your options. I had so many visits before I got a combination of drugs which was able to manage my pain to a degree I could cope. I tried so many different things but sadly cannot have any injections as my epidural space is completely damaged. I just kept going back. They had referred me to the Pain Clinic and by the time my appointment came I had some degree of relief. After visitng them they had completely eliminated the nerve pain.

It is hard for partners because they cannot feel your pain, even mine who says he tries every day to wonder what it must be like for me just doesn't fully understand how bad it is. He tries to do everything for me and I get annoyed with him for treating me like an invalid sometimes. But it does get better over time once they learn to adapt to how your symptoms affect you and when hey hit.

Hope you feel better soon, it is much better to open up and let it all out than let it build up.

take care

eck
xxx

jaspercat

Hi Eva, truly sorry about how you are feeling, I think most of us get to feel that way every now and then, I agree that your partner is feeling a bit worried that he can't help you and that nothing much can be done. Have you ever thought of some home care? to help with washing, dressing etc?

As for the paracetamol can you give him an empty packet or write the name down and he can show it to the assistant, as regards shopping have you tried grocery shopping online? we do it and find it much easier love Jaspercatxx

ritwren

I have nothing to add that has'nt been said already but wanted to say to hang on in there Ido hope things get better for you. It would be a really good idea to talk to the helpline team and your GP about what you're feeling there might be something they can do to help.
hope tomorrow is a better day for you
rita

woodbon

Hello, I'm so sorry, its such a hard thing to go though for you both. I don't know how soon your pain killing injections are supposed to take to kick in, but when I had steriod injections in my wrists I was told it would take about 2 weeks to feel the benifit, and may even be slightly worse before better. They did take a while to work but in the end they did work. Maybe it'll be like that for you, so don't give up hoping they will work yet.

As for rows, your in a lot of pain and your partner has to watch that, he may feel a strange sort of guilt, that he can't do more. Have you thought about taking your partner to the docs with you, or even councilling. Its not being weak, it helps you pull together.
I hope you feel a bit more comfy soon, Love Suexxx

debatat

Hi Eva, how are you today? I hope you are feeling a little brighter and that you had a reasonable nights sleep. I was wondering they did say after the steroid jabs it might get worse before better. Do you think this is what has happened? If so, that hopefully means you might get some relief soon.

I hope you had a lovely evening with your boyfriend.

Take care

Deb x

evabuk

morning, friends, and thank you to everyone else who has replied, sorry, can't remember every single name.

well, last night wasn't too bad....distinctly chilly atmosphere at first when he arrived - he didn't ask what sort of day I'd had, for example, which he usually does.

But it was OK in the end, we had our dinner (which I had cooked) watched TV and he massaged my sore muscles round my back, buttocks and neck for me. I think it was his way of saying sorry.

I don't think I've mentioned before that he's a remedial massage therapist, and one of the great things he does for me is loosen all the tightness up for me every day so I can get a decent night's sleep, so I know I am very lucky in that respect.

my muscles all seem to go into spasm every day (probably the stresss and the pain) and create even more pain so by the end of the day I literally don't know what to do with myself and can't get into any comfortable position. So that is somethine I have to be tremendously grateful for to him, and I tell him that all the time!

He doesn't actually have to do that much for me, other than the shopping -I cook, look after myself, have someone in to do the hoovering for me, so I'm not THAT much of a burden.

They did say the injections might take from 4 to 14 days to kick in, so I must be patient - it's awfully hard though, with my nature, because I'm a worry guts and can't seem to help fretting about what might go wrong

What I've also not mentioned before is that I have another extremely debilitating condition called "dry eye syndrome" caused by meibomian gland dysfunction, which basically means that my eyes don't have enough lubrication on them between the eye itself and the lid to be comfortable, and I am unable to use any lubricating eye drop because I'm allergic to them all!!!

It's quite a common condition, I've had every single aspect investigated,no-one can find a reason for it, and there is no cure....only "management" which consists of wearing protective goggles when I go outside, and doing warm compresses and eyelid massage 3 times a day.

It's not sight threatening, but very limiting as to what one can do (I had to give up work because of it) and also painful at times.

I've had this for 3 years now, so I was already on my knees with physical problems when this wretched arthritis kicked off - so perhaps you can better understand my frame of mind. And that of my partner. Not that the eyes things affects him that much, except that we don' go out much anywhere, but then we never did.

well, I seem to have got the day off to a moany start again....I think I'll just go and get my proper breakfast now and try to get myself into a better mood.

thanks to everyone supporting and caring here- very much appreciated.

(((())))))

evaxxxx

debatat

Eva you are not moaning, don't worry about that. Don't think you are a burden either. You are very fortunate to have a boyfriend who does massage for you and knows how to do it properly!!!!

Have you mentioned your dry eyes to your rheumy? Did the arthritis start at the same time? I only ask because the dry eys is part of sjorgens syndrome and part of RA. I have the dry eyes and dry mouth and skin etc. With your weight loss I do wonder, have you had bloods to rule out the possibility of something systemic?

Have a nice day.

Deb x

woodbon

Hi, Its good to hear you and your partner are getting along. I think, we all in relationships have times when we disagree :!: Often its the silly little things that act as the final straw.

Your pain does sound nasty; pain makes me short tempered and upset. I hope the injections work for you, don't rule them out yet, they might get going slowly.

Take care, Love Sue

evabuk

debatat wrote:

Have you mentioned your dry eyes to your rheumy? Did the arthritis start at the same time? I only ask because the dry eys is part of sjorgens syndrome and part of RA. I have the dry eyes and dry mouth and skin etc. With your weight loss I do wonder, have you had bloods to rule out the possibility of something systemic?

Have a nice day.

Deb x

yes, Deb, a rheumatologist was who I saw first, and he did loads of the bloods and everything came out negative to RA or anything else systemic. the weight loss issue continues to be a mystery, and my GP has done every test imaginable and has found no cause. We can only assume that it's the long-term use of the diazepam...which does cause weight loss in some people.

The rheumy did MRI of my neck as well, and said it's OA. I don't have the dry mouth - only the eyes, and it's a different kind of dryness to the one you get with sjogrens, though I did suspect that initially.

not feeling too bad today, so far. been for one short walk, another one (over to the chemist to get something for consipation :oops: )...oh, the excitement is almost unbearable...

eva x

evabuk

woodbon wrote:

Hi, Its good to hear you and your partner are getting along. I think, we all in relationships have times when we disagree :!: Often its the silly little things that act as the final straw.

Your pain does sound nasty; pain makes me short tempered and upset. I hope the injections work for you, don't rule them out yet, they might get going slowly.

Take care, Love Sue

yes, I have to treat him with kid gloves, I think from now on...unfortunately, like you pain makes me short tempered and easily upset, so I over-react very easily.

thanks for your good wishes

Exxx