Tired of feeling crap

[soupdragon69]

Hey folks,

Well here I am down to 10mg pred last monday and my guts have played up badly since wed night. I spent yesterday in bed sleeping in between running to the loo again with bad pain constantly. Back to feeling like I have a fist sitting in my right lower quad too.

Yesterday was alternating between sweats and freezing. Today I just feel totally wiped out. I managed to shower today and get out to the supermarket but all I brought back was bottled water as cant face food and feel as though I am heading for elemental drinks again.

I mailed one of the gastro nurses this morning but doubt I will hear from her today being friday. Keep contemplating ringing to either see my GP this evening or getting him to ring me. Then I think well maybe I should just wait it out over the weekend and see how I am monday when I go for my blood tests?

I have bad pain in both shoulders that travels down into my hands and fingers to the extent I have to rest my hands/forearms on my legs whilst sitting to support them after I have showered and wait for the pain to subside before getting dressed etc. Currently its taking me 60-90mins to just achieve that.

Sigh....

I am supposed to be going back to work on Sunday on my first phased return shift from midday to 4pm and then work the same Tues and Fri next week.

Am tired of being bloated and looking like the michelin man, tired of mood swings and sleepless nights and desperately dont want to increase the pred again as a result. Looking back I have had steroids since Aug 08 as Rheums gave me injections of it 6wkly then in Oct I started pred full time and am only now reducing it. I am concerned about my bones too and am going to ask for a scan on 4th Feb when I see Rheumatology again for review.

I am waiting for an appointment to see my GI end Jan beginning Feb and have asked the gastro nurse in the email to check and see what is happening.

So tired of figuring out what is IBS, Crohns, inflammation due to decreasing pred etc etc etc.

On top of all this my fiances son trashed the back garden Sat before Xmas with a sledgehammer and several things in the house with a violent aggressive episode (he has been smoking MJ and its changing him personality wise (he has a mental health history with 3-4yrs of counselling) and we think he is diverting into other drugs as we found small resealable bags in his room that appeared to have had powder in them). We have tried absolutely everything (my fiance was stabbed by him just over a year ago and had to have surgery) and I ended up bruised down my left arm and a swollen left hand from this episode as he decided to try and slam a door on me, we also had the police out after he left to go to his mums and spent Xmas week worried he would come back from his mums and trash both our cars at night. We got him to his mums so he would be away from the drug dealers but SHE brought him back 4 times to see his "friends" and he made no attempt at mending things with us. So yesterday my fiance told him he had to go live at his mums permanently which he has agreed to do. My fiance is trying to get moved out of the street he is in to get away from the stress himself and he was told this morning by his own GP it looks like his hip has moved to the top of the socket as one leg is shorter than the other and he has been in immense pain over the hols, so was off to hospital immediately for tests and I am waiting to hear.

Anyone wanna just shoot me now and put me outta my misery??? I know the stress of everything hasnt helped me at all but I have worked very hard to pace myself and have coped reasonably well I feel. I just need to get off the damned pred and have some stability!!

AArrrrrrrrggggghhhhhh!

 

[Agent X20]

Jan
Sorry to hear things are still not a lot better... thought you'd be getting better for your return to work now and things would be looking up!
Obviously the stress doesn't help. I can't comment about potentially violent stepsons, but I can comment about your fiance's hip (well... that could be one less thing to worry about)
I had a hip replacement about 3 years ago... I'd have the other one done tomorrow if it needed doing... hell.. maybe I'll just have it done anyway. Everyone that has a hip replacement gets evangelical about it, and I'm no different. The main thing is not to wait too long, because you just have to put up with a lot of extra pain unnecessarily.
How old is your fiance... if he is still young by hip replacement standards (I was 50) he may be better off with a hip re-surfacing operation (which I had)... try googling "Birmingham Hip Resurfacing" for more details, but with your medical background you probably know/can find out anyway.
Do I remember correctly that your finace has some heart problems? Well, I had my operation under a local anaesthetic... and I've had worse experiences at the dentists.
Sorry to ramble when you're not feeling very well... but I thought I might as well ramble about something I know about. Hope that helps!

 

[soupdragon69]

Hey Steve,

Thanks for posting I appreciate it!

My fiance is 45 now. Will google the Hip Resurfacing you suggested and do some research..

You are right about his heart problems too. Had a mechanical heart valve done then had it redone again because of MRSA 3mths later! Sounds like local is worth looking at.

As an aside my mum is going for hip replacement in the coming weeks. She says she feels sharp pain into her groin now when walking or standing. Cant take more than a dozen steps at present and cant tolerate much more than paracetamol pain relief wise due to other health issues.

She goes mid Feb to see the surgeon and was trying today to see if she could meet him sooner as the pain is so bad.

Very glad you rambled and yes your thoughts on all aspects have helped too!

I have made an appointment to see my GP this monday at 1020hrs so will see what he thinks and also be able to gauge things better from over the weekend..

Thanks!!

 

[Agent X20]

45 is young for a hip replacement, so a resurfacing would be a better bet in my opinion... my arthritic pain started when I was 16 - just after my crohns was diagnosed and I'd been treated with pred. Never really affected any other joints... so I was lucky there. The resurfacing is supposed to be better for younger, more active people (more active compared to a 70 year-old, anyway) as you get more mobility (apparently... as you get a full sized ball joint) and more importantly, if it wears out, it's easier to do another replacement. They don't know how long they last... currently they last about 10-15 years... as that's how long they've been fitting them... ie, no-one's worn one out yet! But I believe people go back to playing football and skiing after having them (don't think I'll be doing that, though) Before my operation I was housebound, in constant pain, couldn't sleep, and about to go on half-pay at work. I left it too long!

Your mother shouldn't have much of a problem. It's still an major operation, but as close to "routine" as you can get. My mother may be having a knee replacement this year. But it's only after the operation that you get that "Oh! my God! What have I been missing." Apart from the fact that you have the residual pain of the operation itself, as soon as the anaesthetic wears off the arthritic pain has totally gone!

Now I'm getting evangelical again!

Keep us all informed how things go with your GP

 

[My Butt Hurts]

Wow Soup, that is a lot of crap for one person all at one time.
How much better do you feel on the elemental drinks? As much as that might suck to be on them again, if it helps you - I guess it's worth it. I'm sorry about everything, it will look up for you soon I hope.
Good luck on Monday - let us know the outcome of your appt.
Feel better!