What if it never gets better?

kmt297

Hi All,
I am feeling a bit down at the moment. I've been diagnosed with PSA for about 4 years and it affects most of my joints including my spine. I've tried all of the anti-tnf's and am now taking MTX (20mg injection) humira (just increased to weekly as it's not working) also etoricoxib (120mg max dose) plus tramadol at night (slow release) and co-dydramol if I need it during the day. The humira isn't working, the mtx gives me heartburn and makes my hair fall out, I'm terrified of becoming dependant on opiate based painkillers so I only take them if I really need them and I know that the etoricoxib can give me heart and circulation problems. I've never felt totally well and recently have been given a steroid injection every visit to the hospital just to keep me going. I am not sure I'll ever get remission, nothing really changes - only that my life seems to shrink every month that passes as I find things I just can't do any more... I am still working but it is so hard - I am having 2 weeks holiday just to relax at home and catch up with housework. My husband is wonderful and helps me loads but I feel bad for not giving him the life I know he could have. I know many of you will have gone through this at some point so I just want to know how you cope? Sorry to whinge, feeling rubbish this week.
KT

rosyred

Hi

Im so sorry your feeling so down and the pain is always with you,

You sound like u have a grt hubby and im sure he loves you to bits regardless of ur illness.

Not much help i no but i do wish u all the luck with ur meds and im sure u will get there in the end .xxxxx

lindalegs

Hi KT

I'm so sorry you're having it so rough.

I've had RA for 24 years now and would like to reassure you will get better spells than this. The natural progression of the disease is that it comes and goes and I know that's so hard to believe after feeling ill for such a long time.

The only way for you to tackle this, as it is at the moment, is to take each day as it comes and try to get some rest after work. Try not to look too far ahead because with you feeling low you'll be worrying unnecessarily.

Try to remember that a good day is just around the corner.

Look after yourself.

Luv Legs

barbara12

Hi
Dont be sorry, it will do you good to talk to people, you will get all the support you need on this site.
We all go through the guilt and fears so dont think you are on your own.
Love Barbara xx

sharmaine

Hi KMT

I'm sorry to hear that you've been feeling so poorly. I have OA and that's bad enough sometimes it gets me down when I can't do the things I need to do. I just wanted to send you some cyber hugs. Can you see your rheumy or GP again for advice and tell them how you're feeling?

Hopefully someone on the forum will come up with some good advice for you.

Fingers crossed that things will get better for you.

Sharmaine


quote="kmt297"]Hi All,
I am feeling a bit down at the moment. I've been diagnosed with PSA for about 4 years and it affects most of my joints including my spine. I've tried all of the anti-tnf's and am now taking MTX (20mg injection) humira (just increased to weekly as it's not working) also etoricoxib (120mg max dose) plus tramadol at night (slow release) and co-dydramol if I need it during the day. The humira isn't working, the mtx gives me heartburn and makes my hair fall out, I'm terrified of becoming dependant on opiate based painkillers so I only take them if I really need them and I know that the etoricoxib can give me heart and circulation problems. I've never felt totally well and recently have been given a steroid injection every visit to the hospital just to keep me going. I am not sure I'll ever get remission, nothing really changes - only that my life seems to shrink every month that passes as I find things I just can't do any more... I am still working but it is so hard - I am having 2 weeks holiday just to relax at home and catch up with housework. My husband is wonderful and helps me loads but I feel bad for not giving him the life I know he could have. I know many of you will have gone through this at some point so I just want to know how you cope? Sorry to whinge, feeling rubbish this week.
KT[/quote]

chris7

Hi

Sorry to see that you are feeling really down and fed up with it all at the moment. I do hope your GP can help to get the meds which will give you some benefit and relief. I can't really offer practical advice, but just wanted to call in here and send a hug or two. (((( )))) I do understand the trying to keep working bit, and hope you feel a little better for having the break from it.
Take care
Chris

bertyboy

hi
sorry you are having a bad time of it all x but dont feel bad for having a winge there is always somebody to answer and givethe support and lots of cyber hugs it all helps xxxxxxxx

ritwren

Hi KMT, glad to see you've found the forum. I hope you visit often and find good advice and support as I have. I too have PsA and I know how difficult it is to manage the pain.
I'd speak to your GP again, let him know how difficult you are finding things, you may need a review and change of your pain meds. It would also be worth asking them to referr you to the pain clinic at your local hospital as it's proving difficult to get on top of it. When I was referred they recommended patches for the pain which really helped a good bit, unfortunately I became allergic to them and had to stop but they might be worth a try for you.
It's good sometimes to get out into the open how you are feeling and this is a very safe place to do this. I too am working and it's difficult when you're in pain every day. It's good that you have a break coming up, I hope you are able to make the most of it.
Other methods of pain relief that I've found help a little are heat packs/ cold packs. Acupuncture can help too and I've bought myself a tens machine which helps with the neck and back pain sometimes.
I do wish you well.
rita

woodbon

Hello,
I'm so sorry that you are feeling so depressed at the moment. I know its hard to keep going when you are in pain, and thats making you feel so down.

Your husband loves you and wants to help, my husband does a lot for me and sometimes I feel its unfair on him, but we manage to muddle through in the end! (Muddle is often the right word for it, I've just lost my reading glasses and can't find them!) Take care of yourself and I'm sure thats your husbands main concern at the moment.
Love Sue

kmt297

Hello All,

Thank you for your kind words, you are all so right - it does help to "talk" to people who understand. I suppose that all these years when I thought I was coping well I was really in denial about what is happening. I am going to go to see my GP next week. We have a lovely GP who takes loads of time to listen to patients and explain things but you always have to wait for ages to see him - I'll have to take a book with me! The receptionists are good though and you can call them to check how far behind he is and turn up late. Maybe I will get a bit of perspective and reassurance. I've had a very relaxing week off so far and managed without tramadol at night (benefits of being off work) so not feeling so panicky about dependance on opiates. Thank you again for helping me get through this tough time.
KT