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Feel like my life is ruled by pain

(36 Posts)
LargeGlassofRed Sat 24-Aug-13 07:50:00

Woke up in agony again, it's been getting worse the last few days, I have pluratic type pain on the lower right side of my chest, been going on for months.
I've got morphine for when it's at it worse which I've been taking the last few days, along with cocktail of ofher stuff,
Feeling completely overwhelmed by it this morning
Suppose to be having a lie in for my birthday but pain is forbidding that.

OddBoots Mon 16-Sep-13 06:54:39

Oh goodness, I know what you mean about going into a shell, I had spinal surgery that resulted in a spinal fluid leak and meningitis with a 7 week hospital stay, it does drive you into yourself.

I hope they can agree to the infliximab quickly, my brother has been having that for about 4 months now for ulcerative colitis and his quality of life has improved hugely. It is expensive but if it works then it is worth it.

LargeGlassofRed Mon 16-Sep-13 01:43:53

Sorry taken me a while to update, just went into a shell and didn't know where to start.
I got out of hospital Friday evening after days if begging and pleading, I had to back in Sat ans Sun for drips, but hopefully at home tomorrow. They've agreed to treet me as an outpatient on the agreement if any of my figures get any worse I'm to go straight back.
I found out on Thursday evening after 3 hrs in ophthalmology that my eyes are now very badly affected also, I started a 3 day steroid infusion on Friday to try and get in top of this flare.
Still haven't spoken to London neuro so that's my first Job tomorrow, as I'm still in the middle of this flare I don't know how much if the affects are perminate yet.
Before I left hospital had physio's and ot's see me and have been measured for a wheelchair sad .
They were lovely and really helpful, head is all over the place thoughsad
Pain is much more under control still taking a lot of morphine but at least feeling in control of it at the moment.
I'm not sure if I said in earlier posts that they now know the origin of my right sided plueratic pain.
The sarcoid is in the pleura itself, probably due to scarring from previous surgery's the sarcoid likes to go into scars, it's weird when I'm having a flare up even my tattoo's go 3d and covered in bumps.
Anyway long unorganised ramble, will update again with more news, the next stage they are planning is a drug called inflixibab. But it's expensive so might take some time to be agreed.

MusicalEndorphins Sun 15-Sep-13 05:30:38

Hi Red, just dropping some well wishes off for you. Hope the steroids do the trick.

essexgirl31 Fri 06-Sep-13 12:40:26

How are you?

magso Wed 04-Sep-13 12:26:51

Yes high dose steroids worked very well for me , although it took a few days to see a difference. Made me very hungry!! But also rather moody and gloomy after the initial few days. I hope you soon start to feel much less ill with better pain control- and well enough to get home with your family.

Gigondas Wed 04-Sep-13 08:36:29

Large glass sorry you are still in pain and still in hospital . I hope steroids help - they certainly had a fairly miraculous effect on neuro pain I had which was caused by spinal damage.

I hope MRI helps- it does tend to show where things are pushing Etc in good detail so has generally been a good diagnosis tool. I did find that once you have someone on case who knew what they were doing the pain could be dealt With so have fingers crossed about neuro guy.

the loneliness and feeling of prison in hospital sucks. have you got books,podcast etc to pass time.

I know it is hard as you are probably exhausted with the pain - it is mentally and physically draining ESP neuro pain.

magso Wed 04-Sep-13 08:20:08

So sorry to hear how poorly you are. I hope the high dose steroids knock all that stupid inflammation for six, (gentle hug) and get you better and home. Hospital can be such a lonely boring place to be ill!

amma520 Wed 04-Sep-13 08:10:30

how poor you are. hope you are feeling a bit better now. do you find someway to cure your pain? if you don't and also interest in herbal medicine, you can try it. it is good.

claraschu Wed 04-Sep-13 02:55:11

I just saw your update. I am SO sorry. It must be terrible to be so ill and to feel that you are on your own with it. Do you have supportive family / friends? Are your doctors and nurses being kind to you?

claraschu Wed 04-Sep-13 02:51:34

I hope you are ok. Please update us if you can. I hope you have RL support.

LargeGlassofRed Wed 04-Sep-13 02:41:16

Still in hospital, getting on top of pneumonia,
now but having a major neuro flare up, left side weekness, numbness pins and needles, double vision, balance gone to pot.
Head neuro came to look at me today and not happy with my neuro exam, so ordered a head and spine mri.
Really really want to get home though, it's been 12 days now sad they started high dose steroids yesterday as apposed to the usual maintenence dose and are hoping that will have an affect.
Thanks for all the messages feeling very alone in al this at the moment so lovely to have the support.

essexgirl31 Mon 02-Sep-13 11:46:27

Hope you are feeling a bit better

Gigondas Fri 30-Aug-13 17:17:32

No wonder you feel so ill. Can you get a pain specialist referral?

Morphine did nothing for my pain except making me feel out of it but I was given new lease of life after seeing specialist who put me on mix of synthetic morphine, nerve painkiller and steroids. Ime you do need a specialist as most drs don't have clue .

magso Fri 30-Aug-13 17:13:43

Thinking of you. Hope you are feeling less ill soon.

OddBoots Fri 30-Aug-13 15:45:07

Oh no, you poor thing, you really are going through it.

LargeGlassofRed Thu 29-Aug-13 21:22:43

Still in hospital I have pneumonia now sad

magso Thu 29-Aug-13 08:54:09

How are you doing today?

essexgirl31 Tue 27-Aug-13 19:55:29

Hope you are feeling a bit better today. Blood pressure and kidneys are very much linked.

magso Mon 26-Aug-13 23:26:52

Sorry you are so I'll again. Hope you are being well cared for and soon feeling better.

LargeGlassofRed Mon 26-Aug-13 21:51:35

Thanks all, that's really helpful thanks Essex, really haven't got a clue what going on with me, I think the blood pressure has something to do with the kidneys though?

essexgirl31 Mon 26-Aug-13 21:01:45

So sorry to read you are unwell. I have done a lot of renal nursing if you have any questions.

Lots of healing vibes your way

RandomMess Mon 26-Aug-13 20:58:04

What an awful birthday weekend sad

Hope they sort the problem out very quickly and you start improving.

fanjoforthemammaries7850 Mon 26-Aug-13 20:56:25

That's rough, I hope they can help you soon thanks

LargeGlassofRed Mon 26-Aug-13 20:22:32

Still in hospital they think something going on with my kidneys, so scan tomorrow, pulse temp and bp really high,
Current sats - temp 38+ pulse 125 it's been over 100 for 3 days.
And bp hit a high today of 186/119
Feel awful sad

MusicalEndorphins Sun 25-Aug-13 16:01:43

No wonder you felt terrible! But you are in the best place for now, they can pump you full of medicine and nice and hydrated, and you'll be up and out, dancing with a belated birthday hat on in no time. smile

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