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Carolyn PoulterParticipant
Hi Christine, I haven’t been here in ages, life gets in the way! Interesting that our expierience is pretty much identical. I veer between that pain you mention in the heels and then again a strange kind of numbness. Drives me nuts at night.
I just got out of hospital and unfortunately it would appear I am heading back early next week. I was popping pain pills because of the arthritis and gout like Smarties and of course I paid the price with 3 whopping ulcers – 2 bleeding for ages apparently – and a thing in my oesophagus. #3 ulcer and the oesophagus thingie decided to burst and I was fairly spectacular at home, and in the ambulance, but the third event in the Emergency Room I aced the audition for the Linda Blair part in the Exorcist – OK without the head spinning but the rest, over a litre of black blood down me, across the gurney, the floor and over the poor nurse who was in the line of fire.
I was bunged in another ambulance to another city for emergency surgery, then back to the first hospital and after 5 days of whining and complaining was sprung from Alcatraz. Unfortunately the gains I had made during the stay seem to be dropping. Last Tuesday my haemoglobin was 101 (in Canada we measure it that way, in the US I think there is a decinimal point) but by Thursday it was down to 95. I have to call my GP first thing Monday to try to get in for another blood test and from what he said Friday probably into hospital again for a transfusuion and try to find out what’s going on.
Apparently my heart is skipping a beat too and I promise it has nothing to do with the thought of George Clooney, naked, dipped in chocolate and carrying a nice glass of Benedictine…… where was I again? Oh yes…. anyway I have to have a stress test and of course have been battling yet another gout flare up, this time in my knee, so that’s going to be interesting. Perhaps they will write me a pop song
Hopping on the Treadmill!
Heh
Carolyn
Carolyn PoulterParticipantI can’t say anything beyond my own experience I had my gall bladder removed when I was 31. I was Female but I as not ‘Fair Fat and Forty’ In fact I was red head, thin and 30 and a bit. But I had a whopping big gallstone – looked like a Suchard Easter Egg – and it had destroyed my gall bladder so out it went. Scroll forward 27 years and I had my first bout of gout though at the time it was not diagnosed because it wasn’t in the ‘normal’ place, the toe, but in my heel.
I have a funny feeling all of this is somehow related but I am not sure how. Clearly my body has some issues with getting rid of various chemicals/compounds – uric acid, whatever the heck it is that turns into gall stone, etc. So yes, I do think that it could well be related.
Carolyn PoulterParticipantI had a more generalised rash. I was concerned at first because I have had Stevens Johnson Syndrome twice in my life – penicillin when I was a teen and anti-anxiety drug more recently – so I get very jittery with symtoms like ever and rash. But my platelet count was fine which is one of the ways of diagnosing SJS and I kept going with the Allapurinol. I am so happy I did. My left heel and toe joint were stiffenign up with morning but I am hoping it won’t turn into another attack.
Keith? Can you drop me a line [email protected] – to anyone wondering no I am not a witch though I am sure I have been called that from time to time! It was an old programming joke. Bck to Keith, happy to help out, just need to set up separate accounts just for that side of things.
Also! I might just have picked up a contract for some real paid work, everyone cross fingers, toes, eyes for me, gout twinges allowing of course!
Carolyn PoulterParticipantI am on 300 mg Allapurinol, first prescription. I can’t believe the difference it has made. I can walk again. I might not be the prima ballerina in this year’s Toronto Nutcracker but I am moving again and anyway even though I do actually love the ballet and have been a number of times to see that particular one and others in London I can never really get through any ballet performance without seeing Morcambe and Wise https://www.youtube.com/watch?v=p6wMWdxXXvo doing their ballet skit… ahem, sorry, I am easily distracted.
Any old how, I can move again. I had a rash in the first few weeks but that has gone. I also seemed to be running some kind of fever for about 3 weeks – over 101F but that has also gone. I have noticed…… how do I say this and still maintain the illusion of being a lady……… urgent need to rush to the loo and things can be somewhat loose? Only once a day and as I tended towards to opposite all my life I think this is evening things out.
I head back to the doctor next week and I am going to try to be brave and insist on staying on the Allapurinol. I am not very good at insisting but I really don’t want to slide back. I just know he’s going to take another armful of blood, the vampire….
I have noticed I am a bit tired and not as strong as I was, we live in a funny shaped house and the main living area is on the middle floor, so steps up to our front door, stairs down to basement with things like washing machine, freezer, spare bedroom and stairs up to our bedroom… right now I am doing the one-step-at-a-time thing. But then, I am 62 so who knows, might have done that anyway.
So in my usual long-winded and peripatetic way I am saying to everyone else here, hang in there, we really DO feel your pain and go with your own instincts. Yes take doctors advice but you know you best.
Gosh I am really not explaining this well!
Carolyn PoulterParticipantGosh I remember Rennies but no, haven’t found that formula here in Canada but have only searched a little bit. We do have Gaviscon in the house, Pepto Bismol, even Milk of Magnesia, but all only used rarely. We are both great fans of spicy food but as we get older we find we pay the price a bit. Heck what am I talking about, as we get older EVERYTHING! has a price. If anyone young is reading this: eat, drink and be merry and add a dash of spice because all too soon…… that will be long gone. After that…. prrrp (pardon!), burp (pardon!), Scuse me! Where’s the loo? (pardon!)
It is an interesting observation though. I do hope and encourage others to comment on this. Who knows, might be on to an entire new treatment. In which case, we should probably all buy shares………. just sayin’.
Carolyn PoulterParticipantIrma, I am so sorry to hear the pain is back.
I have been on Allapurinol now for about 6 weeks and once the huge flare up had finally started to wane I have been trying to cut back on the pain-killers. Paracetomol with Codeine is prescription only here and I didn’t bother to ask the doctor for that. He did give me seven days of an anti-inflammatory, no idea if it helped or not, the pain was so bad I would have been happy being hit over the head with a mallet and knocked out so I fully understand you being a bit naughty and taking your husband’s pills.
BUT this Tuesday I woke up and said to hubby ‘I can feel my feet and they don’t hurt!’ Then I got up to go to the loo and ouch ouch ouch ouch, but not as bad as before. Wednesday I finally got outside, albeit with a walking stick, sighed because of the drought my garden is toast and came back indoors. Yesterday I walked down to the mail box, 500 yard driveway and very steep and only twinged a bit. Today it seems even better, just the odd twinge in my feet and base of my thumbs. Slow release Ibuprofen keeps it to a dull burn.
I am going to ask the doctor to keep me on the Allopurinol, he might resist, but I am going to try to stand my ground. Here we have to pay the full price of drugs, it’s not like the UK prescription charge thing, but Alan’s insurance is covering 75% of it at the moment. I am not very good at standing up for myself with authority figures like doctors but I will try. You should see me going through customs, I always feel like my face looks guilty and I’m not!
I do hope you feel better soon. I have been looking into rapid weight loss/crash diets/anorexia and gout. I also had a dip back into anorexia way back in my late 20’s and had gall bladder problems. Gall bladder removed when I was 30. In a mental hospital which my husband just loves to tell people about – long story I won’t bore you with here, maybe on an off-topic discussion.
I am also trying to be more mobile as Keith advises. I am sure he is right though it is oh so tempting to just curl up and whimper. Ballet dancing is probably now in my past but then, even after 13 years of classes when I was in school I was always more of a Fantasia Hippo than Swan Lake. Instead I am planning on walking more and more each day. Alan is off work next week and I have booked a couple f nights away – hotel, swimming pool, hot tub, nice meals and not quite real champagne, and if the weather is good, a trip on the Thousand Island Cruise – which is basically us with a bunch of others on a boat, drinking wine while we look at very posh houses on private islands which I am sure the rich people hate as we float by waving at them! Heh.
Get well soon Irma!
Carolyn PoulterParticipantI don’t seem to have much of a problem with tophi. I do have a couple of funny looking lumps on two toes on one foot but I think they are shrinking. I am also not sure it is available here. The waiting list to see the Internal Medicine person is pretty bad so I probably won’t get in for at least another couple of months. Meanwhile I’ll keep taking the tablets! ๐
Carolyn PoulterParticipantI will google it Patrick. I am not keen to try drugs at the best of times, have had some nasty allergic reactions but now that I am past the first weeks of reaction to Allopurinol I too will keep going. I am on 300mgs a day right now, next blood work in about 6 weeks.
BUT I to want to add my thanks to John for sharing his experience. It seems increasingly obvious to me that we must all do our own research. And share, share, share on sites like this. What a strange condition this Gout thing is. So many different experiences and symptoms – with the common denominator – it hurts like H***!
Much though I love my GP, he’s a sweet and caring man, clearly GP’s are basically a kind of clearing house – either it’s ‘Take two aspirin and call me next week if you don’t feel better’ OR ‘Well, you’ve got the Dreaded Lurgy and you’re stuffed, I can’t do anything for you but I’ll try to make an appointment for you to see a specialist who will tell you the same thing.’ It’s a Goon Show reference which will mean nothing to people below a certain age and also people from outside the UK. If you are completely laid up because of the Gout then YouTube ‘The Goon Show’ I promise it will make you laugh and possibly forget the pain for at least 30 seconds.
Carolyn PoulterParticipantWow John that’s a huge amount of money! I am so pleased that you are now pain-free but ‘Wow that’s a huge amount of money!’.
I live in Ontario and we have a kind of National Health here – note every province is different in that regard – and we also have semi-private coverage through my husband’s job but I very much doubt either would ever cover those kinds of costs. Even with additional health cover it is actually illegal here to go for any kind of private treatment inside the country, some cover will be provided it we go over the border to the US but it is complicated.
Carolyn PoulterParticipantHi Irma, I have nothing factual to add to Keith’s advice, he has done the research and thanks to this site I have researched more and more and am beginning to find answers to my particular situation.
What Keith gives us is access to answers to our many questions and, perhaps most of all, the reassurance that we are all different when it comes to gout and how to overcome stereotypical thinking by our doctors.
Any old how, as they say on corny US sit-coms, I feel your pain. I know just how you feel at least for me, the pain over-rides all sensible or ludicrous thought. On a scale on 1 to 10 with 10 being childbirth – and in my day no epidurals unless you pre-booked them so for me it was ‘Like or lump it girl’. When I had my third son he was over 9 pounds I did grab hubby’s chest hairs through the gown and said ‘This is all your effing fault!’ and he did get a vasectomy a couple of weeks later but I am digressing, yet again – on that scale 1-10 I would say gout is a firm 11 or 12.
It is just horrible and until you have experienced it first hand, you just can’t understand how painful it is. Nor can you convey that to other people like doctors. If they’ve never had it, they will never understand.
Hang in there, keep asking questions and don’t take their (doctors) answer as gospel. Doctors, GP’s, are great, they work hard, but they are basically clearing houses. They identify and send you to a specialist, or they identify and say ‘it will go away’.
Please keep sharing your experiences. It might not match or ‘fix’ my problem but everything I learn about the condition helps and I fell more in control because of that. Hope I am making sense here. Just took my daily Allopurinol tablet and that always sends me a bit squiffy.
Carolyn PoulterParticipantThanks for the extra info. Yes it certainly seems like I have been my own worst enemy with regard to the weight loss not through sensible methods and subsequent plummeting potassium levels and of course the GOUT!! OUCH! I do hope you feel better soon and definitely follow up even if this bout goes away.
Each time my gout gets better some tiny part of my admittedly tiny brain thinks ‘OK it’s gone! That’s that then.’ until it comes back. So now I am diagnosed I am going to keep taking the Allopurinol. I go back for more blood tests (oh joy!) in about 6 weeks. I am so pleased for you regards the weight loss but don’t put too much on the BMI thing, as long as you feel good and feel good about how you feel and look then that’s perfect for you. Now if I could just follow my own advice………………
Carolyn PoulterParticipantHi Whitney, hope you get to the bottom of the mystery soon. Like Keith says, it sure sounds like it. I have only recently found this wonderful site and I am pleased to discover that the symptoms seem to vary for all of us. Perhaps why the first doc didn’t think it is gout, same thing happened to me I am also interested in your comment about rapid weight loss possibly being a trigger. Though ongrats on the weight loss just the same!
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