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Fed up suffering pain in silence!!

25 replies

susanmt · 11/10/2004 00:14

Once again, its midnight, and I'm up, pacing the floor and trying to find a way to cope with my kidney pain. I've had to have 3 injections of Diamorphine today to try and control the pain I get from Kidney stones, which started when I was 8 weeks pregnant with Rachel, who is now more than 10 months old. The stones were caused by hormonal changes affecting my kidney, changing the way in which my left kidney processed waste, making it produce stones which are still bothering me. I had the same with Aidan, now over 2 1/2, and Rachel was due to a mirena coil failure (it fell out) and I have been suffering ever since. I'm in pretty much constant pain which only strong painkillers seem to help (I'm on my 2nd GP -a partner in the last practice refused to prescribe painkillers as he thought I was an addict - I've spent months trying NOT to be addicted to painkillers and I'm not - a bit dependent, perhaps, after taking them for over a year and a half, but not a drug addict!!).
I've gpt PND, hardly surprising really - and its under control. The last time it took 11 months for the stones to go away and I'm hoping its going to happen this time,, but I'm just not sure - how will I know when it's over.
My whole life is ruled by pain - when is it going to start again? (it hits like a sledgehammer, and has knocked me unconscious, it makes me vomit most times) . I can't go ahead and learn to drive as I am unsafe - you can't drive if you could pass out without warning - and I don't feel safe looking after 3 small children (all under school age) when I can be so unsafe.

There's nothing they can do for the stones except let them pass - they have to come out. There's no treatment, they're too small to be 'blasted', they have to come out on their own and it is acknowledged that renal colic (passing a stone) is one of the worst pains there is.

There's nothing you can do - I suppose I'm just looking for a bit of sympathy. I've put up with this for 18 months now. I just hope it is over before I go mad!!

OP posts:
80sMum · 11/10/2004 00:30

Oh God, Susanmt, that sounds truly awful. I can't imagine how yo've coped for so long. I'm not surprised you've grown attached to the painkillers; anyone would do the same when faced with the same situation. I've heard that there are places called 'pain clinics' that chronic pain sufferers can go to for help. Is there anywhere like that near you? Though I should think you've probably tried everything by now. You poor thing; you've had 18 months of agony and young children to care for as well; no wonder you got pnd. Heaps and heaps of sympathy and hugs.

polly28 · 11/10/2004 00:34

god,I feel for you susanmt,to suffer pain is bad enough but for it to be constant and going on for such a long duration must be horrendous.

I don't know what to say except I hope you get through this and the pain ends soon.

tatt · 11/10/2004 05:39

Oerhaps something on this site might help? It suggests that some things might help them to pass - folic acid or magnesiun, depending on the type of stone - and also suggests alternative treatment for pain. Don't know if any of it would be any use but sounds like you have nothing to lose except the pain.

www.healthandage.com/html/res/com/ConsConditions/Urolithiasiscc.html

nailpolish · 11/10/2004 07:18

hi susan im a renal nurse and i just cant believe this is happening to you. why hasnt your gp referred you to a renal consultant at the local hospital? i think you should ask him if he hasnt mentioned it before. even just for a consultation

GeorginaA · 11/10/2004 08:04

No advice, susanmt, just a thousand gentle hugs from me. It sounds absolutely hellish.

Batters · 11/10/2004 08:40

This reply has been deleted

Message withdrawn at poster's request.

joanneg · 11/10/2004 08:55

good website and support group for the control of pain

Marina · 11/10/2004 08:56

I'm with GeorginaA on the gentle hugs front, SO sorry to hear that this misery lingers so longer after the baby has arrived safely. "Colic" is not really the most appropriate terminology in this case it seems to me.

susanmt · 11/10/2004 09:06

Thanks everyone. Feeling abit more positive this morning.
Nailpolish - i have a fabulous urologist who is as stumped as everyone else - what I have is a very rare pregnancy complication. As the stones are so small all we can do is let them pass. I've had a stent twice but I really didn't tolerate it well, it felt like my insides were falling out all the time and I got infections in the stent, so both times it had to be removed. I've recently been put on much stronger antibiotics to try and get on top of the infections the stones cause and this seems to have been quite succesful. Things are better than they were, but even the urologist (and he has been in touch with colleagues all over the contry - I am even being presented at a conference!!) cant think of any different treatments.

Thanks for being so nice. I feel like I am just getting by, but I am mainly OK.

OP posts:
nailpolish · 11/10/2004 09:28

so so sorry to hear all that, glad you have good doctors tho. can only imagine what pain you are in. stents are awful if they dont work. lots and lots of luck xxx

aloha · 11/10/2004 09:40

Oh, you poor thing. It sounds absolutely vile. I can't believe it has gone on so long. I hope you are right about the 11months duration and that it won't be much longer.

hester · 11/10/2004 10:07

Just to say you poor, poor thing. It sounds absolutely horrendous. I so hope things improve for you soon.

PuffTheMagicDragon · 11/10/2004 10:56

Susanmt, HUGE sympathies to you. It sounds dreadful.

I have a "suspected" gall bladder dysfunction, which every few months "kicks off" and I am in complete agony for 6-7 hours. The pain is indescibable and very very frightening, and leaves me completely incapacitated.

When it subsides, I am totally exhausted from the pain and it takes 3/4 days before I feel ok again.

I can't imagine coping with that pain level in a constant way as you are.

(((((((hugs))))))))) and I hope it gets sorted.

Amfs · 11/10/2004 11:18

Susan .. gentle [[hugs]] I'm so sorry for you .. but you can get through this

have you considered asking to be referred to a pain management clinic in the meantime

or alternatively trying hypnotherapy to help you manage the pain ... it can't remove it but can make it more possible to cope with

Easy · 11/10/2004 11:21

Hasn't your GP offered to refer you to a pain management clinic? Even if there isn't one local to you, I would have thought it was worth your while to travel just to get help with this.

Much sympathy my love

susanmt · 11/10/2004 13:19

I've seen the pain doctor locally - he's fab and tried a few things, but the trouble is its not constant or chronic pain - its repeated acute pain, and as such is hard to treat - patches for the pain make me really groggy in between attacks, other medications just don't seem to work. Hadn't thought of hypnotherapy. I know no-one does it locally, but I might be able to swing a referral elsewhere. Dh does acupuncture and has tried it - to no effect. The pain is like that bit of childbirth when you think you can't go on, then you get the urge to push! Except I give birth to little stones the size of a grain of sand. How depressing!

Thanks for all your support. I don't go on about it much, but it is getting to me just recently!

OP posts:
nailpolish · 11/10/2004 13:51

susan, no-one thinks you are going on about it - we just want to give you our sympathy! all the best

susanmt · 12/10/2004 07:24

Just wanted to say thanks everyone. I was feeling really down yesterday and your messages have made me much more positive. Thanks.

OP posts:
marthamoo · 12/10/2004 07:29

susanmt you poor thing My dad has suffered from kidney stones and I have never seen anyone in such agony (apparently woman who have had children say labour pales into insignificance in comparison to the pain of passing kidney stones). Much, much sympathy and don't feel like you are going on - I'm amazed you are so stoical!

susanmt · 16/10/2004 04:15

I'm just coming on for a wee moan. I've had a really good week with my stones, have only had 2 all week, which is very very good for me. A couple of weeks ago they gave me a course of strong antibiotics (dh the tactful doc said it was 'domestos' - it was Ciprofloxacin, which is used for, amongst other things, Anthrax!), and I've had no signs of infection since, so I am hopeing we might have FINALLY broken the cycle of infection-stones-infection. When this happened before and we finally got on top of the infections (after my 2nd baby was born - I've now had my 3rd), after about a week I suffered a ghastly week where it seemed that my kidneys were clearing out all the gunk they had left in them. I had a week of agony, and then it was over, bar an odd one or two over the next month.

The last 24 hours have been just foul. After such a good week, it has been hard to take. But I am hoping it is the end of it, that it is finally clearing out adn that soon I will be pain free.

Its a pain though cos dh is on call this weekend which means he could be busy. And, wonderful, wonderful man though he is, it is getting him down too. DO you mind if I let off some steam about it here over the weekend? Especially in the middle of the night (its after 4am and I havent slept tonight at all) the pain is hard to deal with , but MN is a great sanity saviour! Thanks a bunch!

OP posts:
hoxtonchick · 16/10/2004 09:03

oh susan, you poor thing. really hope things improve soon, & dh isn't too busy this weekend. .

Amfs · 16/10/2004 09:52

well thinking of you .. and I for one will be here for you

as a partner of someone who has chronic pain due to AS / PsA I'd just like to say I occasionally get pissed off by it all .. but it only lasts a short time .. and its more of a selfish feeling: being sorry for myself and the impact on me and fear for the future (which you don't have as this is TEMPORARY ) bit than actually being narked with DH .. when I get over it I feel even more guilty and try to make it up to him by being even nicer than my normal incredibly lovely self ... don't know if it helps to know that or not?

PuffTheMagicDragon · 17/10/2004 00:51

susanmt, was wondering how you were getting on, sorry you've had a rotten week. Fingers crossed that things improve.

tigermoth · 17/10/2004 07:28

susanmt, hope the pain is less today. It sounds such a horrible thing to bear. I hope this is the last of it.

mrsforgetful · 18/10/2004 10:00

susan- thanks for shedding some light on the pain my husband is in- he has a 8mm kidney stone- and has just come back from the doctors with pethedine.
the past week i have been woken by him so many times (he actually cries out in his sleep- and he is so restless)....i was beginning to get angry- then i read your posts-

I hope you have better days- and again thankyou for making me more sympathetic.

XXXXX

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