Warning miserable post

theresa4

Sorry not been around been feeling sorry for myself.
My steroid hasnt been as effective as I would like this time, my twisted fingers hurt like crazy never really stopped this time, and its wearing off my ankle and knee joints and wrists already only 3 weeks in. My bowel kicked off again yesterday so Im practically housebound or I have to starve to go anywhere. On top of that I havent slept more than 2 hours a night (if Im lucky) for 3 weeks. Last night I managed to drop off around two but some foxes decided to do mating calls at 3am and woke me up. Im seeing my Gp next Tuesday but just feel like its same old same old and Im really sick of it.
My lovely rheumy has put me on the waiting list for my 5th Biologic but as I have already had 4 and NICE guidelines are for 2 I have to see if my local PCT will fund me. Im not even sure I want to go down that road again but my middle fingers are twisting and painful and other fingers are starting to look deformed too. Its only slight but enough that I see the difference and hate it. The worst is that as some of you may remember I changed from my original rheumys when the female one was a b...... and basically accused me of lying and that my pain threshold was probably low etc etc,... well the biologic clinic is all of them under the main proff. That means I could end up being seen by her again :x Its stressing me out so much I feel like cancelling my appointment. I am sitting here crying and have noone to talk to as my hubby is so stressed with work and bad tempered and friends must be bored of all my rubbish. sorry to put a damper on yoour evening i just needed to get some of this out.

Theresa x

ironic

Hi Theresa,

Aw flower you are having a stressful time. Could your doctor/rheumy help with your concerns about seeing the same consultant at the Bio clinic? Hopefully when you get your appointment letter from the Bio Clinic it will give you the name of the person you will be seeing, then you or your doctor could ring up and ask to see another person.

We have our own company in the construction sector so I can well understand the constant stress you and OH are under. It is a vicious circle stress and Arthur loves it. The lack of sleep is awful, it makes everything so much harder to handle.
I have everything crossed that another treatment will be offered to you, as daunting as that is for you.
Hang on in there Theresa.

Hope the rest of the family are doing okish.

I x

theresa4

Thanks for the reply

I got my letter which states Im under the main Prof biologics clinic again which is what has upset me I rang and they said thats how it works. I will see a registrar then a consultant. Doesnt say which one I will see. I asked too.

its wait and see. :?
The worst is the last time I saw my nice rheumy my notes were missing somewhere between gastro and rheumy so she didnt remember how I felt about illness with the biologics treatment. I cant expect her to remember everyone and it wwas the 2nd time id seen her so she wasnt going to remember my case but it doesnt fill you with confidence when you have to explain everything. I just want to scream.............
well I suppose I shoould go to bed and see if I can sleep tonight
Thanks again for the reply good to know someone is listening Im feeling pretty lonely right now

Theresa xx

ironic

Maybe you could have a word with the rheumy nurse, sometimes they have a better insight in to the workings of these departments. Could you take someone with you on the day?

I do hope you have a better sleep tonight.

hugs anyway,

lv, I x

ritwren

You're having a right rough old time and don't be apologising for feeling meserable, we all do at times.
With regard to not seeing a particular dr at the clinic, all you have to do is either get in touch with the Rheumy Nurse and let her know, she can put a note on the outside of your file and / or say to the person who you report to when you check in. They can easily say that you don't want to be seen by a certain Dr. This happens all the time and it is your right so don't be worrying.
Perhaps your GP could give you something like amatriptyline or something which can help with your poor sleeping pattern. That's what they suggested one time at the hospital and now my GP prescribes them.
I do hope you get back on top of things soon and meanwhile I'm sending gentl hugs. R.

frogmorton

Dear theresa

I am so sorry you are having such a rough time (and you are), at the moment, but please don't appologise on here. If you can't moan on here where on earth can you??

I agree with a fair bit of the advice you ahve been given. When you book in - that is the time to ensure you don't see nasty lady...grrr!!! and lots of people do ask not to see people, or to see the main person for example.

Like ritwren l have amatriptyline at night to help me sleep...if you are not on it l really would be asking for some. Without sleep everything feels worse

Love and ((((()))))

Toni xxx

mig

So sorry you are going thru all this,wil be thinking of you and sending hugs.(((()))) Mig

theresa4

Thankyou all for your support.
I am already on amitryptelene 25mg per night but that is one of the things I need to discuss increasing with gp. I refused before as it was making me too drowsy throughout the next day but I think I'm used to it now. The pins and needles and numbness is getting worse so it's obviously not working.
Does anyone else get that numbness I get it in my arms legs and bum. I don't have to be sat or leaning or laid for a long period even 1 minute of lying on my side can produce a numb shoulder/hand /fingers /feet/toes/legs I never know which will react. Sometimes when I type it can happen too like now I'm getting pain down my hand little finger down and once I rest it will go numb. Then the pins and needles start. And they r painful.

Thanks again
Theresa

barbara12

Hi my love
Im so sorry you are suffering like this, I can honestly feel your pain....but please don't apologise for the rant, I am a great believer in getting things off your chest.
Sorry I wont be much help. but you go and get the amys upped...at least if you can get some sleep you will feel a bit more human.
Gosh I wish I could help more ..sending you loads of very gentle hugs ((((())) and dont forget we are always here.xx