In despair

tillytop

Today I was supposed to be going for my long delayed Rituximab infusion. Due 6 months ago but postponed due to other health issues and postponed twice more in the past few weeks due to infection.

But I am having to cancel again because I have been awake all night with severe abdominal and groin pain and nothing in my paindulling arsenal (including copious amounts of Oromorph) is touching it. So not only would I not be able to sit through an 8 - 11 hour infusion, I suspect they wouldn't give it to me anyway.

I have had permanent abdominal pain, and upset stomach at varying levels of severity, since October last year so I am well used to it but this is something else. The groin pain has been going on for several weeks and I had put it down to a pulled muscle because I was walking badly due to an injured foot but it has got worse and worse and has been rendering me literally immobile on a regular basis for the past week or so. And given that I now can't distinguish the abdominal pain from the groin pain, I suspect they may actually be connected. I toyed with the idea of trying to get to A&E in the night but decided to try to hold off until this morning. Things are easier than they were in the night but still pretty bad.

So, I am just feeling really desperate - I suspect a lot of my abdominal pain is meds related but there is nothing I can do about that until I can have my Ritux and that is now likely to be at least two weeks away, assuming things improve for me to be well enough to go.

I am dreading ringing the rheumatology unit to cancel for the third time in a row - and then battling the GP receptionist to try to get an appt for today but I really do have to see a doc sooner rather than later.

Thanks to anyone who has read this far. Just needed to share.

Tillyxxx

ritwren

Tilly I'm so sorry to hear you're not able to have your treatment today. I hope you get an appointment with your GP today and get this sorted out. Just wanted to send you hugs and good luck.

tillytop

Thanks so much Ritwren. I actually feel less despairing than I did now I have decided I can't go, having spent much of the night worrying about what I was going to do and trying to convince myself it would be ok.

Oh ain't life with arthritis just peachy :roll:

Thanks again.

Tillyxxx

suzygirl

Tilly, I am sorry to hear this, I hope you can get a gp appt and that they are able to help you.

(((hugs)))

skezier

Tilly just leaving you some 9(((( ))))) and a nudge from the Deer with a hope that the stomach thing can get sorted as soon as possible as well as the infusion re-booked. Love Cris xx

dreamdaisy

Oh. I don't know what to say apart from the fact I am so, so sorry. DD

stickywicket

I'm so sorry, Tilly. You must be in pain, weary from lack of sleep, brassed off, mixed up - the full works, I guess.

Yes, I can relate to your feeling a little better now that the horrible decision is made but so disappointing for you.

I don't know about the abdo stuff. My stomach problems are higher up than that so I can't offer any advice. I just wonder about the groin pain though. Could it be hip? That's where I got most of my hip pain pre-THR.

I hope you manage the GP appointment and I'm coming with you, along with about 1/2 the forum, I suspect.

Good luck and keep us updated.

((()))

PatriciaH

Oh Tilltop - poor you

Doesn't life like to give us a good kick when we are already down....
I hope you manage to get an appointment with your GP today and he is able to find out why you are having such terrible pain. If the Oramorph didn't shift it then you must have been in complete agony. Oh dear.

Do let us know how you get along today.

Take care

Patricia x

fowls48

Dear Tilly


So sorry to hear this, must be really frustrating for you now .Hope you get your appointment this morning (((())))xx you poor love .



karen.

dreamdaisy

Hello all, I have spoken to Tilly and she sends her thanks to everyone. The GP has discovered that she has an inflamed colon and a muscle or tendon injury in the groin - probably caused by scoring England's goal against France. She has to increase the pred, stop the diclos and lightly dose with moronorph at regular intervals. She cannot get on the forum at the moment as her husband is working at home and therefore monopolising the 'puter. She will pop on later to say hello. DD

suzygirl

Thanks for the update DD

Tilly I am glad the gp has worked out what is going on, I hope his treatment plan works. I am thinking of you

Rest up and Izzy sends a cuddle x

RosieGlow

Poor you, but at least you now have some idea of what`s going on. Get that sorted, and away you go!

As DD would say.....Rest, rest, then rest some more......Rosie x.

stickywicket

I agree with the other, Tilly. A proper diagnosis is always better than speculation. Well done you on getting the appointment. I hope normal service can be resumed as soon as possible.

While I'm here, I'd like to congratulate you and MrTT on your marriage. Sharing a computer :shock: It must be love :P

tillytop

Mr Tilly is having a little break so have snuck on to thank you all so much for your kind replies. (your comment about sharing a pc made me laugh Sticky ).

I'm doing ok - wish the Oromorph would do a bit more on the pain dulling front but hopefully once the diclo gets out of my system my stomach at least will feel easier.

Right, off to try to watch the tennis on telly (although I think I will probably end up sleeping through it :roll: )

Thanks again all - and thanks to DD for playing pigeon for me earlier.

Tillyxxx

dachshund

Hello Tillytop.
i'm pleased you have found out what was causing your pain and i hope you will have relief soon.
joan xx

barbara12

Oh Tilly I am so sorry, its just not blinking fair , but I am glad that you have seen your GP, its does make us feel a little better when we know whats going on.
Now you take it east and enjoy the tennis .....soon be Wimbledon..

mig

Hi Tilly ,Been away so only just catching up,hope things are alittle brighter for you,sending hugs (((()))) Mig

Heather65

Oh tilly,
i know what a pain to have to cancel again but it cant be helped just one of those things ,lets hope you can get sorted out soon ,
Heaher x

tillytop

Thanks so much everybody for your kind messages.

My stomach etc is MUCH more comfortable now, thanks, I think, to the cumulative effect of regular smaller doses of Oromorph as advised by the GP this morning (rather than waiting till the pain is unbearable and downing a big dose all at once which is what I was doing before).

Thanks all for your support - I really appreciate it.

Tillyxxx

stickywicket

Little changes can make big differences (either way), can't they? I hope this trend continues for you Tilly. I really do.

Wonkylegs

Hi Tilly

so sorry you're having this all to deal with. I know from my own small hiccups with infections that it is immensely irritating when we have to cancel and change infusions.

I wanted to add some Wonky hugs to your basket and to wish you well for a speedy recovery from your present difficulties in time for a prompt infusion and return to reasonable function for you.

Hugs ((()))
Wonky xxx

skezier

Hi Tilly,

I might not be around much for a bit but please don;t think I am not thinking of you. leaving the Deer full to the brim with hugs and love as well as tea and cdm in the usual place. Cris xxx

emsjane

Tilly, you poor love! I suffer from stomach problems after taking NSAIDS for so long and doc says I have IBS now! So I am very familiar with being kept awake at night with pains! Everything seems so much worse at night time too!!!

I hope you get it all sorted and doc helps!

dreamdaisy

Morning gorgeous, I hope things are better today. TOY. DD

stickywicket

Morning Tilly. I'm thinking of you too. I hope the slightly better trend continues.

tillytop

Hello kind peeps and thank you for you continuing support and kind words. I can't tell you how much I appreciate it.

I am pleased to report that things are MUCH better today. Thanks to Mr Ororomorph (as so beautifully christened by DD) I slept for - are you ready for this - EIGHT WHOLE HOURS!!!!!!! Which is absolutely unheard of for me! The only downside was the resulting neck-related headache shocker but even that's gone now and you can't have everything.

Despite the temptation to stop the Oromorph today to see what happens, I am being a good girl and continuing to take it every four hours as the doc advised (albeit at a lower dose than yesterday) and so far, so good.

My stomach is obviously enjoying its Diclo holiday, unlike the joints who are noticing its absence and I have a sneaky suspicion that I am going to be putting the pred up further before too long. But I have rebooked my Ritux for 26th June so hopefully I will get to that one and be able to reduce the pred again to a better level shortly thereafter.

So all in an all a much better day so far - and the sun is shining too so all is well in Tilly world

Thanks again, so much.

Tillyxxx