Is there any help out there?? It feels like I'm s... - PMRGCAuk

PMRGCAuk

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Is there any help out there?? It feels like I'm suffering in silence!

PurpleG profile image

I have been suffering for over 7 -8 years with weak bones in my knee and acid problems and bowel problems. It took Drs a while to diagnose me, they started me on antisickness tablets. I can't name them all as I have been on so many. I have been diagnosed with severe acid reflux disease along with IBS diarrhoea. I always have flare ups and I find it hard to sleep. I'm on PPI's Lansoprozole 30mg in the morning.. & 300mg of Zantac Ranitadine at night! The Lansoprozole used to help me alot and if I don't take it I always have bile and be sick violently. It's not very nice because I'm sick every day and it's really unpleasant as my stomach is really sore I can't lie on it or my breasts. I sleep with my pillows raised. I also take alot of Rennies! I use to be on Omeprozole, buscapan, spasamol, these didn't do much for me. I have been buying Nexiums, as they won't prescribe me these as I'm on alot of meds. I don't feel right in myself at all, I'm young and I have been ill from a young age. Nothing shows up in my routine blood test! I have ahad a barrium which shows i have an abnormal diaphram. I think im going to stop taking my medication and try and self medicate as my body is getting weaker and weaker. I didn't know that Lansoprozole, long term weakens your bones. I have had a bad knee for so long, I seen a specialist last week and he's referred me to rheumatologist! I have thrush at least once a month. Is there any miracle drugs out there or any help ?? I have to write things down as I forget things easily.. It's embarrassing and it's taken a toll on my mebtal state!

11 Replies

It's horrible to have the problems you have listed, I can relate to them as I share many with you but not to the degree you are suffering. When I was told I had fibromyalgia as well as pmr, it was really helpful as the osteo guy, rheumy and go are all talking from the same page, not that it has helped much as there's not a lot they can do but at least I get sympathy and understanding when I see each of them. So I am sending you at sympathy and understanding, so we can share it 🤣 Keep venting on this site as you will be given some helpful advice and know that you are not alone. Take care xx

PurpleG profile image
PurpleG in reply to Angiejnz

Thanks so much for your caring words! I hope your okay. My mother's just been diagnosed after years of pain with Fibromyalgia and Severe Athritus in her neck, now also IBS but she hasnt got the reflux 😏!! She's on different meds than me but hers is mainly for the IBS.. I notice they treat people with different drugs! Its an invisable disease so i can understand everyones struggle who got it, expecially brain fog!! Not everyone out there takes you serious.. It's like I have a serious condition but nobody takes me serious as I am happy and polite on visits unless I end up having a break down🙄🤣! I am currently waiting to see a surgeon, I am extremely nervous as they said I can have my lining tightened up but there's 50% chance that I could come out evan worse... so I need to have a good think! They dis say if my symptoms persist then my stomach can rupture🤔😐. Its making me feel evan more nervous because tjey dpnt know where the bleeding is coming from! I am only 23 and I have no kids. I try not to talk to people about it because it upsets me that's why I thought I would register last night as it is anonymous lol! I think I'm left in the dark with most things.

ThankYou Lovely!

Xx

Hello - you are dealing with a lot - but I am wondering if taking yourself off meds might be even riskier if you don't do this carefully or with some very well- informed person helping you. I have taken a PPI for acid reflux for many years and successfully - I take 2x 30mg of Lansoprazole each day and if I don't take it my body 'reminds' me - and there is evidence that you can't just cold turkey such drugs. I know PPI's have had bad press but they have so far been a successful drug for me even pre-PMR/GCA. I also had IBS prior to everything else and ironically Pred seems to have simmered this down. But you are taking a different combo of drugs than I ever have and it sounds like there are many more variables involved. You need to find out (I think) the real 'cause' of all these symptoms - I know some people have dealt with similar ones successfully with various diets. I am not suggesting this is what you need to do - or which nutritional approach might be helpful- - but I don't think there is one 'miracle drug' which would resolve all these issues - what for example is the reason for your ongoing thrush ? You do sound like you are in a 'bad way' though and I think someone who will consider your health issues 'holistically' - would be helpful. I would be looking for a good doctor myself and/or someone with nutritional health expertise.

All good wishes

Rimmy

PurpleG profile image
PurpleG in reply to Rimmy

Thanks for the reply! I am currently trying to limit myself with medication as I am feeling so unwell. If I don't take my Lansoprozole 30mg my body reminds me to. I have been to numerous visits with Dieticians and they have said to me that my diet for my condition is under control. I have a probiotic every morning. They tested me for ovarian cancer but it come back negative! I am having a ultrasound at the end of the month as this Dr pushed me for one, she examined me and she said it could be a cause of Endemetriosis. I hope this isn't the case. They have never given me a smear evan thou I've asked, what young girl what ask lol. I have exploding headaches every day too.. as I am always stressed due to this! I'm Thinking I could have automine disease as that runs in family. I haven't properly been looked after as my Dr's surgery isn't the best. I thought they were helping me but they prolonged everything, they say I'm too young! I woke up this morning, run straight to the toilet and it's bright yellow bile that come straight out. Every time I take Ranitadine it makes my tounge yellow along with the bile. I don't like taking pain killers as they bung my stomach up, so I usually suffer or have a hot bath :( . My Dr said to me I should never double up on Lansoprozole as they are strong medication and I'm on too much for ant acid medication! I can't win lol!!

Thanks Rimmy!!

All the best to you too!!

PMRpro profile image
PMRproAmbassador

This is a forum for polymyalgia rheumatica and giant cell arteritis - and you don't appear to have any symptoms of either so there is limited advice we could offer here. However - if you are seeing a rheumatologist I'm sure they will look for possible answers to the symptoms you do have. But no - whatever you may read in the media, there are no miracle drugs for anything, just ones that may help a lot with symptoms and very occasionally lead to remission of whatever it is you have.

All the best with your rheumatologist visit.

PurpleG profile image
PurpleG in reply to PMRpro

I don't know what that is! I can't remember what the Dr said I could have he was talking for a while and I was agreeing, he said a long work about my muscles but I can't remember. I have weak knees, ankles and hip lol. Thank you!!(:

You mention a weak diaphragm? Do you mean lower esophageal sphincter (the one between your oesophagus and stomach?)? This is often the problem with acid reflux. Have you considered surgery? The Nissen and linx are 2 fairly common solutions.

I'm waiting to see a surgeon.. They have said that my diaphragm is weak and it's letting alot of acid up due to the valve as its constantly open. Have you had surgery? I'm nervous as I am young and wouldn't want it to rupture!

Thanks for your insight :)

I cannot add to the previous posts,but l sincerely hope that you somehow are able to get help from doctors that will relieve the debilitating conditions that you are having to cope with.All good wishes,Patricia.

Have a look at what Dr Sarah Myhill has to say about acid reflux - it may be that your stomach is not acid enough. If this is the case then your food will not be sufficiently acid to pass on to the next stage of digestion ie though the pylorous into the duodenum. My understanding is that food can back up in the stomach because of the lack of acid and end up back in the oesphagus which is what causes the discomfort. There is a simple test involving sodium bicarbonate which you can do and which will give you an idea of whether this is actually happening. If the problem is a lack of acid then the remedy could be as simple as a regular dose of apple cider vinegar to change the PH levels. I am no doctor, go and look at SM's website, and look out for her podcasts. You will find some help and support with the private group on facebook - "Support for the followers of Dr Myhill's protoco"l.

Although many medical problems overlap, as PMRpro has said, this is a forum for sufferers of PMR and as such will not be able to offer much support off piste. But I hope this gets you going in the right direction.

Thank you I will have a look and see what she got to say! I've watched alot of Dr's, they all got different insights and different information! I been watching Dr.Axe he seems legit and pretty intelligent.. he goes into the PH levels and the best things to eat which gives you energy and repairs your lining. I got to trial and error things untill I seen any results I guess🙄😣. I've done elimination challenges but haven't seen any changes in results. I find anything starts me off evan water and I deffo cant do acidic stuff. I have alot of flare ups.. It's effecting my skin now too, I'm coming out in alot of sores and spots!

Thanks for your advice.

All the best.

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