Fed up with pain

[Gaynorlowson]

Has any one who has had a transplant suffered with pains in legs groin and back. Since my tx I am in so much pain no one seems to know why or to care to be honest. My liver is doing brilliantly. I am not one to moan and push myself daily and am so grateful to be alive, but this constant pain is getting me down as it's stopping me from doing daily things . Any advice would be appreciated. 😊

[freddie76]

Yes my husband had a lot of pain after transplant . Have you been on steroids?. They were stopped as It was decided this could be the reason and as time has gone on he has got better.

He did have to have an op on his foot, due to bone damage, they think that was down to the steroids.

Can I ask you what the reason was for your liver failure. Depending on that, it could also be connected.

[Gaynorlowson in reply to freddie76]

Hi thanks for replying . I take 5 mg of steroids and had AIH . They hope to stop my steroids after year op anniversary in Jan the thing is I take less steroids than after transplant but it's getting worse 😟 X

[RodeoJoe]

How long ago was your TX? I had a bit of a "comedown" when I came off steroids 3 months after TX. My knees were the worst and I had to see the physio a few times. It gradually went after 6 months or so. I don't know the exact reason but I understand that steroids inhibit the adrenal glands that take some time to kick back in and can cause aching and joint pain.

[Gaynorlowson in reply to RodeoJoe]

I had my tx in January . When I mention the pain to my liver team it's as if they are either not interested or never heard of it . If I knew why I had this pain it may help .

[RodeoJoe in reply to Gaynorlowson]

Yes I got the same reaction. Not sure why they're ignorant of these problems? If you google "aches after prednisone" you'll find loads of stuff.

"Body aches: Many people report severe body aches when they stop taking this drug. These aches may last for weeks following your last dose of the drug. If they become too intense, you should consider tapering more gradually."

[jojokarak]

Steroids arghh they are a nightmare... Mine have dropped from 30mg to 15mg in the space of six weeks and I aching like a 90 year old who has just completed a run around the block lol. It will ease once your off them and your own body kicks in , I know it's not pleasant but just make the most of the days when it's bearable and lie in a bath on the bad ones x

[Gaynorlowson in reply to jojokarak]

Thanks I will lol I'm sat here now with a tens machine on. Useless lol 😊 X

[Gaynorlowson]

The thing is a have brittle asthma so have been on steroids before for weeks on end at 40mg never had this x

[jojokarak in reply to Gaynorlowson]

I have asthma as well and same as you been on them before for weeks. But difference is because it's long-term use now we been on for months, I have just been diagnosed with cushings syndrome because I been on them that long and I have never suffered with that before. That's why they have to taper us off them now, when we have for asthma we can just stop x

[Gaynorlowson in reply to jojokarak]

Thanks for ur advice that makes sense . When I said same thing to my Dr I just got a blank stare lol . Like I said to dr if I know what it is then I can cope 😊 X

[dckimberly]

It's common ,I have back pain also. What you may not know is just how far up and out your rib cage is moved during procedure, it's practicaly over your head. My pal had so much pain, and they discovered 7 hairline fractures in her back/ spine. This was done during the surgery.

I'm still on pain killers due to pain.

The operation itself is insane. Practically moving every organ out and then fitting them back in around new organ, but yeah, the rib cage thing is really a big deal.

Take care!

Kimberly

[Dudewheresmyliver1]

When I had my first transplant I did have pain in these places. I suffered the leg pain for years & with pain around my transplant site.The doctors could never find the cause but thought it could be pressure pain on & around the scar site.It does fade but never goes away completely.

I'm waiting for a second transplant atm so I'm full of pain at the mo.

I hope you and your liver have a lovely time together.x

[Gaynorlowson in reply to Dudewheresmyliver1]

Good luck with ur second transplant hope ur not in too much pain x

[dckimberly in reply to Dudewheresmyliver1]

I'm waiting on my second one also. My first one is failing mechanically, and I also have pain, HE from a shunt (biggest mistake I made was letting them put one in) edema and now I need a new kidney also. Sighs. I hope this new ones work. Fingers crossed!

Cheering you on!

Kimberly

[Dudewheresmyliver1]

You sound like you have read my health notes.I had a shunt that went stupid,TIPPS that only part worked so they had to do it twice.

My kidneys are dodgy working on less than 40% together but one is going to need replacing.

Edema that needs controlling with IV Fruzomide every few weeks & if I do get another liver the surgery I need 2 teams of docs & they will only do it in the day.

I'm so pleased to hear frm somebody who is waiting for a second time.It can feel so lonely & confusing.

I wish you all the best Kimberley, truely know I feel your pain & hope they get you sorted soon.

Antonia