Hi all...I have been in excruciating pain since I had surgery on my shoulder last October...still under investigation.
When I came out if hospital my GP gave me NSAIDS for the pain without a stomach protector and within 3 days it had damaged the lining of my stomach very badly. My pain has never been under control as a result so I am really suffering and the pain from both are debilitating.
GP has offered me ranitidine (vomiting) omeprazole and Lansoprasole...all to no avail...I still have acid reflux badly, pain, a crushing feeling in my chest and extremely nauseous.
She thinks I may have an ulcer (I have a hiatus hernia too) and have sent off a stool sample.
I know you will all be screaming out DO NOT TAKE PPIs being hypothyroid and all the other auto immune diseases I have as well as low b12. Frankly, I am At my wits end with this. I have also tried:
Apple cider vinegar
Bicarbonate of soda
Home made ginger tea
DGL (licorice) well known for treating ulcers and acid reflux...all help a while but acid is still a major issue.
I have so many health issues under investigation at the moment (I post on Lupus UK) and don't know what to do, the GP will expect compliance but the PPIs are not helping. She will want to increase and I KNOW my body...they are not helping.
Any suggestions? Thanks in advance.
BB
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bestbuddy
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The point you need to make to your doctor is that you only want these pain-killers while you allow your stomach to heal. Taking NSAIDs is just constantly aggravating your problem. I'm sure you could come up with other reasons why different pain relief would be helpful. You do have to be aware that the pain killers I suggest above are addictive and that they should be taken as little as possible.
I've had stomach damage from NSAIDs, and one thing I found helpful is increasing my fibre intake. But this has to be done very carefully, because it might reduce your absorption of medicines and supplements, so don't overdo it.
Hi Buddy, how awful and what a dilemma. I just wonder if you have ever had an h-pylori breath test. I guess it's a matter of degree but if you have it, there is a cure.
I too have a hiatus hernia and spondyloarthropathy. I have problems taking NSAIDs because they exacerbate the lymphocytic colitis that I have, amongst the several auto immune disorders I have. I understand your reluctance to take PPIs but I take Esomeprazole 40mg ( also called Nexium) which I find works better for me. My GP tried to get me to change to Omeprazole ( even though he had changed me from that to Esomeprazole because the other wasn't working!) because it is more expensive but I stuck to my guns and have remained on it. Luckily it doesn't cause me any problems. Funnily enough, I also have a shoulder problem ( I fell over in November and landed on my shoulder and hip) and now have a bone spur so can sympathise on that point too although I haven't had surgery. I've recently had steroid injections which, whilst they've dulled the pain a bit, they certainly haven't cured it. I can't see that they will until the spur is removed. But that doesn't help you. Definitely ask for different pain relief and make sure that your stomach issues are dealt with. H pylori needs to be tested. I hope that you get some relief soon. Clemmie x
You may have to take ppi's until your gut heals..i really don't know what else to take. I know someone who had this happen and it took several months to heal. He had to go on a special diet too.
Oh and see if they will scope you to see if indeed you have an ulcer. The person i knew who had this, did not have h pylori, just sores from nsaids, or so they think. They thought he may have the beginning stages of Crones Disease, but the symptoms have stopped.
Hi all, thank you for your concern and replies. I will look into the different medications and consider those options.
My rheumy has suggested I take gabapentin for the pain, however, my sister is on this and it spaces her out so badly that I am concerned about being able to drive and go to work. I resigned from my job as a teacher and now work as a supply teacher, this way I can fit my health in around my job without the stress. Also, I want them to investigate WHY my shoulder is no better not throw a blanket over it to mask it. I had a CT scan 2 weeks ago but have to wait til June now for results. They think I have carpel tunnel also.....I want to scream!
As I said earlier, I have taken a stool sample to the GP to be sent off to be tested for the H pylori bacteria and she said if I had not heard anything back within about a week then it is ok. I know for certain it is from using NSAIDS and I am beginning to wonder if I will have to struggle with this the rest of my life too, it affects my breathing and I think it has irritated the hiatus hernia and my gut too with having coeliac disease.
With so much wrong, I feel embarrassed to be going back and forth. I am currently under 4 consultants, one less than last year which is an improvement.
Hi there you say you have tried Apple cider vineagar but have you used the right one and for long enough? You need the one with the mother which is a cloudy substance within the vinegar that holds all the nutrients that help your gut and help you immune system and you need to take it over a long period to see results! Aloe vera drink is very good at repairing the gut too! Hope this helps?
Hi, yes I was using one with the mother in a glass of water and honey for about 2 months. It soothed things for a while but acid came back with a vengeance. I am taking DGL which is the chewable licorice without the bad part that raises blood pressure (I was hospitalised last year with dangerously high blood pressure ...no known cause at 222/104) and so have to take an ACE inhibitor now too.
Hi no probs. I have been using it for almost 2 years 2 tbsp per day one in morning one in evening! It helps keep my gut healthy from using NSAIDs!
Bestbuddy,
Pain can be difficult to manage and when in a lot of pain it is easy to lose rationality and focus. Using NSAIDS in some cases is necessary but in yours is completely counter productive. It will only give short term relief but long term further stomach problems, by leaving the stomach even more susceptible to ulceration.
I would suggest you focus on natural healing of your stomach. Pain is often transmitted from other parts of the body and healing your stomach might take a lot of body inflammation away, improving your shoulder. You will need to get yourself tested for H.pylori which if present needs to addressed for healing to take place.
There are many supplements known to promote gastric tissue repair and reduce imflamation. I am not a nutritionist but know that licorice root and slippery elm are good for coating the stomach lining. I read about a Japanese zinc and camosine supplement that has helped a lot of people with issues similar to yours and is now licensed in America.
You need to your own research and there a lot of information out there on healing your stomach naturally.
Meanwhile avoid alcohol, coffee, salt, and poor dietry choices and if completely desperate uses low doses of paracetamol and codeine for pain relief.
Work on those feel good chemicals in the brain and believe that by using the correct healing foods and supplements, they will act as powerful tools in aiding you to get better.
Sometimes stomach acid is created by the slow motility of foods. Some foods remain in the stomach for too long and cause bloating as proteins ferment and send gases/yeasts up into the oesophagus ....this is why so many people link being Hypo with low acid. Best not to eat fruit after midday.... PPI's are intended for short-term use I believe....
Regarding your raised blood pressure - have you read Dr Malcolm Kendricks blogs ?
Marz, very interesting article. I don't know if you have seen the videos by Dr. John Bergman but he also had a segment on blood pressure and I've been in a tizzy every since. I thought he must be wrong but now it seems verified with that research. Just another evidentiary fact that the medical world revolves around a dollar sign. Not that this is a surprise. We have got to come to terms that capitalism will always take precedence over ......everything else.
Yes thank you - and I believe he did one on Cholesterol. I have also read Kendricks latest book - Doctoring Data. It's a good read. Kendrick spends his time digging and checking the research - his findings are quite shocking. Like the one where the research declared that there were no side effects to a particular statin - when in - when Kendrick looked deeper he found out that 6000 people dropped out WITH side effects quite early on - so of course there were not included in the Conclusion that there were no side effects
I find that gf products, and all grains except rice give me heartburn. They are also linked to my headaches. I too suffer from damage caused by NSAIDs, and control my gastritis with diet alone.
Given that you present a picture of generalised autoimmune problems you could consider the AIP or autoimmune paleo diet. Also there is now some suggestion that autoimmune disease is caused by infection. Give it a google because I can't remember the list of possible infections. Most are treatable, and there are also some herbal treatments. Slower than ABs, but possibly less long term effects (and generally non prescription if your doctor isn't sympathetic).
Finally, for pain, have you considered a TENS machine? Drug free, and temporary so it doesn't interfere with any tests they might do. It is generally thought nowadays that prolonged pain is not good, because it sets up neural npatterns leaving you in pain even once the cause has healed.
But I do agree, you need to be scoped for an ulcer and to exclude stomach cancer.
Thanks, I am looking more and more to eat natural product and to cut out processed foods as much as possible. There is a very strong family incidence of AI conditions but I think they are treating me in too many separate boxes and not holistically.
I did buy a tens machine a few years ago when I had surgery on my left shoulder (recent right shoulder), thanks for the suggestion, I will have to try it again. There is definitely some nerve involvement...on my scapula it feels like something is burrowing deep into my shoulder...like a mini corkscrew. Having surgery has ruined my life these last 6months... Now doing the physio is excruciating and I have developed carpel tunnel in both hands? Coincidence? I think not... I was having pains down my neck, right down my arm to my fingers. Yet they won't make the connections. They give me NSAIDS and wreck my stomach...misery. Sorry for the rant...but thanks for your suggestions
Hi Ruth, I bought a small device with electrodes and it packs a pretty good punch. I use it for my back. Where would you place it for an ulcer problem?
I have no idea where the electrodes might go for an ulcer. I just slapped them on as per the instruction booklet.
When I get home I will have a look and see if I can find my manual online. It has different frequencies for different conditions, but I seem to remember experimenting anyhow. I certainly didn't switch off when I was supposed to!
I just have a little unit, nothing near as large as the chiropractor used on my back. That's the only area I use it but you probably meant somewhere on the back by the spine, right?
Icy Hot is the one brand for home use in the states. If it could stimulate digestion, I think it would be great.
I'm assuming you have a two pad unit? Or one with two pads side by side. Either way it will be symmetrically placed either side of the spine. The trick is how high, which depends where the nerves serving the stomach leave the spinal cord. Try googling for the manual for your own unit, and if that doesn't throw anything up then just Google for tens manuals and see what you can find. I haven't had a chance to have a good search for mine. I don't think you can do any harm by putting them in the wrong place. You just don't get any benefit.
No, not specifically. She treats me as an equal and will expect me to do the research myself...I have even given her info from BMJ and B12 society on treatment and symptoms of deficiency in B12 which she has kept. So I suppose I will take any advice from this forum too!
Hi bestbuddy, so sorry to hear you are having all these problems at once! This seems to happen when everything is only just in balance, one problem leading to many. I'm just wondering if your GP has tested for B12, Ferritin, & Folate levels. My low levels were only picked up when I was having a particularly bad time, getting one infection after another, lots of aches and pains all over. The GP tested for everything he could (in sheer desperation I think), and discovered my low B12. It is common to have this alongside a thyroid condition. If you had full anaesthetic for your operation, this also can seriously compromise vitamin levels. Do hope things improve soon. Best wishes MariLiz
Hi Bestbuddy. Your message sounds so familiar. I was 'diagnosed' with Fibromyalgia but have been taking thyroid meds for the past few years after finding the wonderful Dr Skiiner, RIP. I have also had problems with both shoulders and the left one is still painful after 2 years (a sharp calcification tore a tendon). I also have a hiatus hernia and stomach + oesophageal problems with acid reflux, caused by coming off my PPI (Omeprazole) at the suggestion of my long-distance doctor (who has taken over Dr Skinner's role) but continuing my NSAID. I became ill after only a few weeks. I had been on Omeprazole for years without anyone querying the fact. Yet when I went with the stomach and oesophageal problems all they suggested was other PPIs! I had a stomach ulcer in my 20s. I've had carpel tunnel sydrome in one wrist for years, but with all the other aches and pains, it does not bother me that much, although I have lost mobility in my wrist over the years. Anyway, it doesn't help you much to learn that we share symptoms! I found the apple cider vinegar did not help, as I was adding to the acidity, but I did try Mastika (mastic gum) which helped a little. I also do not drink coffee and have avoided wheat products for some time, although I am not a coeliac. I also avoid anything with yeast in it too and all dairy products, both of which help, especially avoiding yeast. I have yet to solve the pain relief problem, but seem to tolerate topical antiinflammatory creams eg Voltarol, which help the shoulder, although I try and only use them sporadically. I don't have a tens machine but have an electric hand-held massager which helps when muscles get tense owing to all the pain. Have you tried acupuncture? I found it helped if only in the short-term. I find that stress definitely exacerbates the stomach problems, although I know it is hard not to feel stressed when you are in pain. I take 10 mg amitriptyline to help me sleep and it does help relax the muscles and reduce pain. If the pain is stopping you sleep properly, you will be in no state to cope during the day. Good luck and I do hope things start to improve soon. x
Thank you to everyone for your suggestions and for your good wishes...it does seem that I have slammed into a brick wall at full speed at the moment and will re-read all your advice to see whether I can include these in my already lengthy regime.
I had similar from NSAIDs for back pain. Once I stopped taking the NSAIDs and switched to other pain meds, it took about 3 months to heal. Even though I am in a lot of pain, I avoid the NSAID- just one tablet (even with food) and I can feel the burning. It returned to normal for a couple of years after stopping the pink meds.A couple of months ago I took fludrocortisone for POTS and ended up in the same place as you againStool sample being tested and if not h pylori - camera planned. So sending understanding.
I wonder if it is worth supplementing B12 - Jarrows sublingual? My mum went low B12 on omiprazole. I found cocodamol effective for pain (some get constipation which can be managed some don't)
"I still have acid reflux badly, pain, a crushing feeling in my chest and extremely nauseous."
I have to say, BB, that they sound like classic gallstone symptoms. I take it that's been considered and you've had an ultrasound to check if you have them?
I was treated for an ulcer to the tune of two lots of H. Pylori treatment and many, many months of Omeprazole all to no avail - still had terrible breastbone burning and a chronic cough from reflux. Oesophagitis got worse from H. Pylori treatment (this is normal but they pretend it isn't happening because they don't want to admit H. Pylori treatment might not be the cure we all thought it was) until one night I had an attack of biliary colic that landed me in hospital.
The pain was unimaginable - I do not exaggerate - and the ordeal of hospitalisation was a nightmare. Despite every best effort from me for a year and a half, I had to lose my gallbladder anyway.
The fact that you have a sensation of pressure in your chest is the biggest give-away for me. That wouldn't be normal with an ulcer, but it's classic with gallstones. Gallstones are also a thyroid connected disease.
Anyway, I would say to you, do NOT accept any diagnosis without testing. I'd recommend an ultrasound first, because it's non-invasive and it's a foolproof diagnosis for gallstones. Then an endoscope if it's negative for gallstones. Don't take meds without proof or you'll end up with a whole load more illnesses.
Thanks for the concern but I had my gallbladder out 2 years ago! It definitely came on after being given NSAIDS without a stomach protector after I had surgery on my shoulder in October.
Then I'd say you need to get an endoscope down there to see what's actually going on. Ask your doc for a gastroenterologist's referral. Get someone to clap their beadies on it! I don't suppose it could be a trapped stone in a biliary duct? It is feasible one could have been lurking there waiting to pounce for two years. Or a problem with the Sphincter of Oddi? I suffer with this since losing my GB and can't take co-codamol because of it (damn it - they were my favourite painkillers too).
I'm allergic to NSAIDS and haven't been able to take aspirin since I was about ten or eleven. Unfortunately Ibuprofen followed suit. They do cause damage like that. Just before I lost Ibuprofen forever I had been taking it for period pain followed by strep throat which meant an unnaturally long time. It caused oesophageal ulcers which felt like something stuck in my throat. Very unpleasant. I gave them up after that.
You might just have to give it time. One of the troubles with PPIs is as soon as you try to stop them the pain gets worse - recognised problem. You just have to sit it out - and stay off the oranges! But I have to say I'd want an endoscope before I believed in any fictitious ulcers. Nothing less would do!
Thanks, I will look into this. I need pain relief for my joints not just my shoulder...as I said earlier I post on the Lupus UK site too as I have UCTD WHICH IS UNDIFFERENTIATED CONNECTIVE TISSUE DISEASE - a cousin of lupus.
I just had an endoscopy done which revealed I had multiple ulcers. Currently waiting on the results but I'm currently taking omeprazole and it seems to be working good for the acid reflux. All of this happened because I was taking ibuprofen due to an injured leg and hamstring. Normally I dont take medication, even if it's for a headache. But the pain in my leg was so bad I was limping and could barely move my leg! I will never in my life take ibuprofen again.
P.S. I should just add on that when I was hospitalised with colic, the attending surgeon asked me about my current treatment. I told him I was being treated for an ulcer. He said "Has this ulcer been seen by an endoscope?" I said no, it had just been diagnosed by the doctor. He replied "Then you don't have an ulcer." It's always stuck with me, because he was absolutely right. Don't trust a diagnosis unless someone has clapped eyes on concrete visual proof.
Tastes like disinfectant to begin with but within about 6 weeks will be tasting like fruit juice!! Aloe helps to heal inside and out by lining the stomach and relieving the pain. Does contain natural salicylic acid (aspirin), so not suitable if you are sensitive to this or if you are taking warfarin or are diabetic because of long chain sugars. Hope this helps!
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So tired of the battle with useless doctors.
Levothyroxine and Gaviscon
Hello again
