Tag Archives: Reflux

Weekly Roundup

I’ve had a strange week.  Up one minute down the next.  Not sleeping, still.  Rampant heartburn, which seriously gets me down.  Horrible stomach pains, which feels like my entire insides are on fire.  Diahorrea one minute, bunged up the next.  Weird head symptoms I haven’t had in years and a scary lack of energy.  Then there’s the usual joint pain, back pain, neck pain, head pain, nausea, floaters, brain fog, sore throat etc. etc. ad nauseum.

All out of the blue on Wednesday I started my period, which wasn’t due for another 8 days.  So, after a 6 month hiatus, it looks like the peri-menopause is on the move again, with my last 3 cycles being 25 days, 25 days and 20 days.  And now I’m wondering how much of my recent decline in health, insomnia, lack of energy and mood swings are down to that, how much is down to my mast cell disease after becoming allergic to all my antihistamines, and how much is just a general ME shitty patch.

Truth is, it’s impossible to know.  And irrelevant, when I can’t take anything for any of the symptoms whatever their cause (so, please, no advice on trying hormones, black cohosh or anything else because I can guarantee you, I’m allergic).

According to Google, 80% of healthy women going through peri-menopause will suffer increased “fatigue”, so the fact I’m feeling like I’ve been run over by a bus is probably to be expected.  It still sucks though.

I had my annual Doctor’s visit last week and asked her about my fainting episode during my last period.  She said that, although uncommon, it’s not unheard of during peri-menopause and she wasn’t concerned in the slightest.  As mine happened a few hours before bleeding began, she explained that we have a mix of hormones which trigger the bleed and during menopause the surges of these hormones can be extreme and affect all our other bodily systems.  She didn’t even take a blood test, but did say that if it became intrusive I should go back and see her (though it took me 6 weeks to get this appt, so I’d better not be in any kind of rush!).

On a change of subject, I’m still having problems in the area where I had my molar removed last September.  The tooth next to it has had a sore patch on the gum ever since which irritates the life out of me.  I thought it would eventually settle down, but it’s worse if anything and I don’t know what’s going on.  I see the dentist next month and only hope he can shed some light.

I was given a mouth guard to wear on my bottom teeth to help with my TMJ and I think it does, if only I could tolerate it in my mouth.  It makes my teeth ache like a son of a bitch and is just so uncomfortable I can barely stand to wear it.  I went back and had another, less tight, one made but still no joy.  I think a combination of my delicate EDS gums and my pressure urticaria are going to make using any kind of mouth brace impossible *big sigh*.

I dug deep into my energy bank today and went out for lunch with the Olds, as it’s Father’s Day here in the UK.  My reflux has not thanked me one little bit, and I could now cry with the pain, but my Dad enjoyed it so that was the main thing.

As you can probably tell, I’m feeling proper down in the dumps today and just sick and tired of being sick and tired.  It’s relentless.  The bloody weather isn’t helping things either.  It’s now the middle of June, the longest day, and it’s 15c and raining.  Again.  I can’t believe it’s summer and I still have my central heating on, FFS!  I do so much better in warm, sunny weather (about 21C is optimal) but the long range forecast is for another month of the same shite so it’s not looking hopeful.  I love Britain but our weather, particularly here in the North, is pants.

Having said all that, the wild flowers are out and there is nowhere prettier than the UK for the flowers that line our roads and fill our fields, so I’ll leave you with a picture of an Ox-Eye Daisy I took this morning.  Nature always makes me smile :-)

Weekly roundup

The past week has had it’s fair share of ups and down.  I’m still not taking any medication for my GERD, although I’m swigging Gaviscon Advance like it’s water.  The replacement tablet prescribed by my GP wasn’t available anywhere, so she had to change it and even that drug was only available from one pharmacy.  It had to be ordered in, so I’m currently waiting to pick it up.  To be honest, though, I don’t hold out any hope of being able to tolerate it.

I have the worst outbreak of butt hives I’ve had in ages.  It could be that the H2 blockers were doing more than just helping my stomach acid.  Or it could be down to the fact the Birch pollen season has started so my histamine burden is currently way high.  Or it could be down to the emotional stress of the past couple of weeks.  Or a combination of all of the above.

I also have a really sore throat.  Due to my M.E. I had a permanent sore throat for about 15 years, but now no longer suffer.  So I’m wondering if this is M.E. related or whether I have a mid throat infection (it’s much worse on one side than the other, which points more to the infection theory).  It’s impossible to tell if my glands are up – I had Glandular Fever when I was 13 and my glands have been like rock hard golf balls ever since.

My Mum hasn’t been good this week either.  She had to be on 3 different types of antibiotics last month for a chest infection, which has now given her the worst case of thrush I’ve ever seen.  The cream she was given isn’t touching it, so it looks like she might need oral anti-fungals.  But she’s now started coughing again, so is on yet another lot of antibiotics which will make the thrush problem worse.   She’s just so fed up of the whole merry-go-round and seems really down – I don’t blame her.

However, the week hasn’t been all bad – in fact, quite the opposite.  The first week I stopped the H2 blockers for my reflux the pain was like nothing on earth, possibly from rebound acid production.  But this week it’s actually settled down to at least an acceptable level and I no longer feel like I can’t manage it.  I’m not saying it’s any fun, but it’s (kind of) bearable.

The weather has also been great this week.  Still in single figures, but dry and spring-like.  I’ve even managed to potter about in the garden for half an hour most mornings doing a bit of pruning and having a general tidy up after winter.   Being amongst nature in the fresh air never fails to lift my spirits and I sat mesmerized watching some sparrows taking in twigs and straw to my nest boxes.

Having been largely stuck in bed for the past 2 weeks it’s given me the opportunity to start a new blog (my friend K says I’m a blog addict and I need professional help ;-) ).  As many of you know, I have a passion for amateur photography which started 4 years ago when I adopted Bertie.  I’ve never had a lesson in my life and when I first started hadn’t got a clue what I was doing – it took me an entire year just to decipher the manual of my DSLR camera ;-) .   In addition, none the information I read either in books or online seemed aimed at a total beginner and assumed all sorts of knowledge I didn’t possess.  So it’s been a really steep learning curve trying to figure it all out.  To save anyone else going through the same trials I thought I’d start a blog on what I’ve learned and share my experience with others interested in improving their photography skills.  The site is called ‘The Amateur Photographer’ if anyone is interested – it’s best to start at the beginning as the posts all build on each other.

It was Mother’s Day here in the UK last weekend, so I managed to pull myself together enough to take my Mum out for lunch (well, OK, technically my Dad took us all out for lunch as I’m broke and couldn’t afford the bill).  With my stomach problems I thought it would be a nightmare, but actually I coped alright given the circumstances.  My Mum was sent some flowers off my brother, so I thought I’d leave you with a picture of a Ranunculus from the bouquet – isn’t nature wonderful?


Weekly roundup

I’ve had one of those weeks where life has seemed tough.  Every joint is hurting, I’ve struggled to sleep for over 3 months now and am beyond exhausted, I’ve had a bad run of migraines one of which kept me up all night on Thurs vomiting and I had a mast cell reaction on Fri night which now means I’m petrified to take my H2 anti-histamine.  So I’ve had a break from it, and the anxiety, and now have rampant reflux which is simply agony and my cough is back so acid is obviously spilling into my lungs.  After 20 years of living with these kinds of symptoms, and more, every second of every day, I’m kinda tired of the whole thing.

I’m not getting on very well with my Smart crutches.  I ideally wanted a black pair, but after reading the blurb realized I needed the smaller crutches with the shorter leg and arm rest lengths and they only come in red, blue and grey.  I settled for grey, which are actually still very smart with black stripes, and they are definitely much lighter and more user friendly than the NHS gutter crutches.  However, the cuff which goes round your arms is massive and as I walk along my arms just fall out of them.  Not sure why they’ve made crutches for tiny people and put a standard cuff on them?  I’ve kept meaning to ring the company for advice, but it’s just another chore to add to my list and I’ve not gotten around to it yet.  I think I’ll try sticking some foam inside to pad the cuff out and make it smaller (I don’t want to use any kind of tie because it makes them impossible to put on or take off on your own).

Monday I took my Dad 30 miles to our local hospital for a follow-up endoscopy (he’s had severe stomach problems for years).  We got there at 1pm, his endoscopy was due at 1.30pm, it takes about 90 minutes, so we thought we’d be home about 4pm.  Think again.  We sat in the packed, boiling hot, waiting room on rock hard chairs until 2.45pm when they finally called his name.  I told the nurse I was popping into the city to do some Xmas shopping for my Mum and would be back in 90 minutes.  I got back to the hospital dead on time to find my Dad, stony faced, sitting in the waiting room.  Thinking he’d finished early and had been waiting for me to pick him up I apologized, but he said “oh, don’t worry about it – I haven’t had the damned thing yet!”.

By that stage he’d been sat there for nearly 3 hours.  I pressed the buzzer to the theatre and asked a nurse what was happening.  Apparently there’d been several emergencies in that afternoon, which I understand, but not a single member of staff had been out to the waiting room to tell any of the patients what was happening.  They’d just left them there.  My Dad was told not to eat or drink anything for 6 hours before the procedure.  He wasn’t up in time to have an early breakfast, so hadn’t had a bite since his supper at 5.30pm the night before, nearly 24 hours earlier.  Good job he’s not diabetic.  By the time he had the procedure done and we arrived home it was 6.30pm – we were both totally fed up and my Dad was absolutely ravenous.

The week has not been a total right-off however.  As regular readers know, my Mum has been coughing up blood again and had an emergency CT scan last Tuesday.  We got the results and there has been no significant change since her last scan, so that was a massive relief.  We still don’t know why she’s coughing up blood, but it has happened before, went on for 3 months, then just stopped.  I’m convinced she has Ehlers-Danlos and has very fragile capillaries and it could just be that, because of her severe recent chest infection and all the coughing she did, she’s damaged some of them (is that even possible?).  She also has horrendous nose bleeds for no reason anyone can fathom and which can happen in the middle of the night while she’s sleeping.  Anyway, they’ve made her an appt to see a pulmonary specialist in Feb.  Not sure why, as there’s nothing anyone can do about her lungs, but we’ll go anyway and see what they say.

My other big news of the week is that the results of my second Camera Club competition were announced on Wednesday.  It was on a set theme of flowers, so I submitted 2 very different pictures: one of some poppy seed heads taken in my garden, and one of some wild poppies in a rape field taken on a walk with Bertie early one morning.  To my amazement the seed photo won me 2nd place and the poppy flowers won me 1st!  As I’d never taken a “proper” photo in my life until 3 years ago and am completely self-taught (which is code for ‘haven’t a clue what I’m doing’) I’m always gob-smacked that seasoned photographers think my pictures are good in any way!

1st place

1st place

2nd place

2nd place

Right, it’s now 8.30am and I really must get up and have some breakfast.  My dog walker doesn’t come on weekends, so I have to take Bertie out at 9am which, with the new scooter, is no bother.  I always wake between 6am-7am, regardless how little sleep I’ve had, and do nearly all my blog posts at this early time of day as my brain works at its best just after I’ve woken up.  I know this totally flies in the face of most people with M.E.’s experience, where their brains simply don’t work in the morning, but I’ve always been a Lark and do all my paperwork before 11am because after that my brain is simply not capable!

Weekly Roundup

This week found me back at my GPs surgery (after a month long wait for an appointment!) for a prescription for a Proton Pump Inhibitor (PPI) called Omeprazole.  My continuing painful reflux is getting me down and I’m now desperate enough to want to try a new drug.  The good news is that if I react badly to it I have the option of increasing my H2 blocker Tagamet, so all is not lost.  I do have a reaction every time I take a Tagamet tablet (which is 3 times a day) but thankfully so far it’s calmed down after about 30 mins and it’s the price I have to pay to keep my stomach acid in check.  I just wish I didn’t have to take any drugs at all as I am now so phobic about meds it’s a daily battle not to be petrified every time I put a tablet in my mouth (for those unaware of my reactions, I can take a drug for years and then suddenly become allergic all out of the blue so taking any drug is simply a game of Russian Roulette).

I’m also facing the start of root canal treatment on a back molar on Monday, so am looking forward to that like a hole in the head.  If it goes badly I’m just going to have the tooth pulled and put up with the gap, which thankfully is right at the back so shouldn’t be visible but might impact on how well I can chew!

I’ve had a bad week for migrainy heads, currently being on day 3 of a thumper.  I’m not sure whether it’s a migraine or just a crappy headache, which feels like it’s right at the centre of my brain.  It’s making me quite nauseous though, so maybe it is a migraine.  My nose is also really stuffy and my sinuses are sore, so maybe it’s pollen related being as though the weather is nice.  Whatever the cause I’m now ready for it to jog on.

Yesterday we had a rare sunny, warm spring day here in the north of England so my Dad, my dog and I went to a local bluebell wood where the flowers are all currently in bloom.  My dad dropped me off with my camera, so that I could take some photos for an hour, while he carried on walking with Bertie.  The forest was spectacular and the few snaps I managed to get in the short space of time can’t possibly do it justice – it was worth going for the scent alone :-)  I had a fabulous time………….until I slipped, put my hand out to save myself, bent 2 fingers right back and managed to sprain them and strain my wrist joint – what a clutz!  My finger is now incredibly painful and strapped up, which is making typing this tricky.  It was still worth it though to see one of nature’s most beautiful sights :-)

Photo of bluebell wood Cumbria

Photo of Miniature schnauzer in bluebells



Oesophageal pain

As I’ve mentioned in several recent blog posts my reflux seems to’ve gotten out of hand lately for reasons I can’t put my finger on.  I have constant pain where my oesophagus meets my stomach, a bit like I have a sharp piece of toast stuck.  The pain radiates to my back and goes up either side of my spine from my lower shoulder blades right up to the base of my neck.  It’s a stinging pain which nothing seems to alleviate.  When it’s really bad I also get burning, stinging pain down the outside of both arms right down to the elbows.  Thankfully I don’t have any stomach pain, but eating is no fun.  Drinking or eating anything warm is acutely painful and I’m fairly sure my oesophagus is inflamed or ulcerated.

Unbeknown to me, I had silent reflux for several years which resulted in acid being inhaled into my lungs giving me a chronic cough which was mis-diagnosed as allergic asthma.  Then in April 2012 my stomach really started playing up.  I had an endoscopy that year which showed very little, other than a dozen benign stomach polyps and some inflammation.  It was decided I had GERD and I was placed on an H2 anti-histamine (originally Zantac which gave me awful nausea and brain fog, so I switched to Tagamet which I tolerate really well).  It reduced the heartburn and upper epi-gastric/back/arm pain but didn’t cure it.

I’ve now followed all the usual recommendations for GERD for nearly 2 years:

  • My bed head is raised on 4″ bricks.
  • I leave 3 hours after eating my dinner in an evening before lying down.
  • Most of the foods to avoid on an acid reducing diet are things I can’t eat on a low histamine diet in any event, eg. tomatoes, alcohol, most spices, citrus fruits, fizzy drinks.
  • I’ve never smoked.
  • I’m normal weight for my height and build at 8st 4lbs (117lbs/53kgs).
  • I eat 3 small meals a day, and 2 snacks inbetween.

In addition I’ve increased to the maximum dose of Tagamet (4 x tablets per day) and inbetween doses I take Gaviscon Advance which means I take acid suppressing drugs every 2 hours.  Yet the pain just gets worse and my chest tightness and chronic cough are back.

The next step would be to take a proton pump inhibitor (PPI) like Omeprazole, but I’m reluctant for 3 reasons:

  1. I probably won’t be able to tolerate it.
  2. The Tagamet I’m on currently is one of the drugs recommended for Mast Cell Disease being an anti-histamine, so is preferable to a PPI which has no action on stomach mast cells.
  3. I’m only 46 years old and PPIs are the last drug left for me to try.  If the pain gets worse in 10 years time I’ve no drug options left.

Nothing I eat makes it worse or better and the pain is so acute when I lie down (even sleeping on a slope!) that it’s kept me awake at night for weeks.  Consequently I’m getting more and more tired and miserable, leaving aside the fact that long-term reflux puts me at risk for Barrett’s Oesophagus and ultimately cancer.

I can’t get an appointment to see my GP until 14th May, when I’ll ask for a referral back to see the hospital Gastroenterologist.  I will then have to wait about 4 months just for an appointment.  I’m dreading having to have another endoscopy if I’m honest, as my last one had to be done without sedation (I’m allergic) and the force used to get the camera down set off my dermographism and later that night my throat was so swollen I had to ring the out of hours doctor.  However, if I do end up having another scope at least I now know about my mast cell issues and can ask for some samples to be taken for staining.  In the meantime I guess I’ll have to at least try a PPI because at times I don’t feel like I can live with the pain for another second.  I wish sometimes The Powers That Be, and my body, would just cut me some slack and give me a break and some time off.

Keep your eye on it!

I haven’t felt very well the past few days.  Correction, I’ve felt crappier than usual the past few days ;-) .  The Birch pollen season has begun, so I’ve been sneezing my head off and my eyes are dry and sore, although this year I know to keep all my windows shut, run the air purifier in my bedroom, always wear my glasses when outside and put some Hay Max organic balm around the inside of my nostrils before I venture outside which seems to work quite well.

But I’ve also been really muzzy headed, have had a sore throat and just felt generally drained and ‘not right’.  My chest is also worryingly tight (although I bought a peak flow metre and my readings are excellent at 550) and I’m coughing my head off.  It could be related to the pollen, but at the same time I’ve had reflux pain so it could also be a bad bout of GERD.  I’m already on the maximum dose of Tagamet (H2 blocker), plus extra Gaviscon Advance especially before bed, but it’s obviously not keeping the acid at bay.  I tolerate the H2 so well that I’m extremely reluctant to try a PPI instead, although if it gets much worse I might have to.  So I’m wondering if the sore throat is from the reflux and coughing, or whether I do have some kind of mild throat infection particularly as I don’t feel ‘well’ (although my temperature is normal).  My step-brother gets bad hayfever though, and he doesn’t feel well at the moment either, so it could also be the pollen!

That’s the problem when you have M.E. – every day you feel like you have the Plague, so how can you tell when you actually do have a virus?  Or whether your increased symptoms are down to something else entirely, like hayfever or an MCAD flare?  Or whether you’re just having a crap M.E. patch?  Answers on a postcard please.

I gave up going to see my GP about anything about 10 years ago.  She would either hand me a prescription that I couldn’t take, or refer me for tests which always came back normal.  All the visits ever did was make me feel like a hypochondriac which wasn’t good for my psyche.  But there are some symptoms I really worry about, like my lower stomach/pelvic pain which has been particularly bad in recent months.  I am 110% convinced the pain is down to endometriosis, but what if it’s something more sinister?  I have regular smear tests but that wouldn’t pick up ovarian cysts or internal tumours.  About 5 years ago I actually think I had a burst ovarian cyst (I’ve never had pain like that in my life) but I still didn’t call an ambulance – by morning it had settled down a bit and I’m still here so whatever it was it didn’t kill me!  There’s a saying in my family to “just keep your eye on it” – with everything that’s wrong with me it’s a wonder I can see straight ;-) .

The only time I’ve been to hospital was after I’d had a mast cell reaction to having chiropracty for my back.  Within 5 minutes of the treatment I knew I was going to be really ill.  And I was, including having tachycardia for 3 entire weeks and horrendous vomiting/retching.  After 21 days of continuous symptoms (including losing 9lbs puking) and absolutely zero sleep, I had chest pain so bad it felt like I was being skewered by a bread knife.  So at 3am one night I called 111 (the non-emergency number) and was told I had to call an ambulance.  I said I didn’t want to, I’d be fine, but the Doctor on the other end disagreed and called one anyway!  I ended up being blue-lighted to hospital, only for my ECG to be considered ‘normal’ (I knew I was having an allergic reaction and that there would be nothing wrong with my heart) and discharged 5 hours later in the snow, in my pyjamas and with no way of making the 30 mile journey home (a taxi would have cost me £80!).  It’s not going to happen again in a hurry.

I might try some Claritin (H1 blocker) alongside my Tagamet to see if that will settle any hayfever symptoms down (although it gives me insomnia!) but other than that I’ll just put up with the tight chest.  It does get me down though, as breathing is exhausting when it feels like there’s an elephant sitting on your breastbone!

I am, however, going to finish on a high note.  I’ve had the biopsy results for the lump on my little dog’s leg and it’s just a benign cyst and nothing at all to worry about, yayyy :-) .  And my Mum is definitely brighter now we’ve altered her medication – like her GP says, it’s a balance between quality of life and quantity of life.  If I had a choice, I’d rather be well and die at 60 than feel like this every day and live til I’m 100!

The Gluten-free Experiment

I’ve now been gluten-free (yes, I’ve been strict!) for over a month.  It hasn’t been difficult at all and certainly nowhere near as challenging as going low histamine.   I’ve substituted Doves gluten-free flour mix for normal flour in recipes and it’s worked really well.  You can buy gluten-free pasta and cereal in all supermarkets now, and I’ve been baking my own yeast-free gluten-free bread.  Many of the commercial products containing gluten, eg. sauces, biscuits, cakes, I’ve been avoiding in any event as they have ingredients not allowed on the low histamine diet.

Despite my best efforts I’m sad to report I don’t feel any different whatsoever (with the exception of one symptom – see below).  This may come as a shock to all those who tell me gluten is ruining my life, but it comes as no shock to me being as though I’ve tried a gluten-free diet twice before and it didn’t help then either.

I’m sleeping appallingly, consequently I’m so exhausted I can barely function.  I have hives, I am itching, I am sneezing my head off.  I have stomach pain, and back pain, and really bad brain fog.  My bowels are unchanged.  I have nausea, I have throat weakness and I have had 3 migraines this month (which is more than normal).  Honestly guys, I feel just the same.

The exception being that my heartburn is much reduced!  However, before we all get too exited I started on Zirtek (H1 anti-histamine) at the same time as I started the gluten-free diet.  I’m also doing hiatal hernia massage daily.  So out of the three, I’ve no idea which it is that’s helping (yes, I know I should only do one thing at a time, but I needed a good trial of the Zirtek before I go back to see the Consultant next month).

My gluten-free experiment is up at the end of November, so I will switch back to eating gluten.  If the reflux gets worse, I know it’s the gluten.  If it doesn’t, then gluten isn’t a problem.  And before you all say that 6 weeks isn’t long enough to see a change, I’ve done gluten-free before: 6 months the first time and 3 months the second time.  I didn’t see any change then either.  When I started the low histamine diet, however, I noticed a change within the first week.

My good friend K has had M.E. for over 12 years now.  She found out by accident she was Coeliac following a routine blood test about 8 years ago (followed by the usual biopsies), so consequently she has to follow a very strict gluten-free diet.  I asked her if she had noticed any improvement in the symptoms of her M.E. and she said no.  None whatsoever.  I know gluten is an issue for some people, but it’s not at the root of every disease known to man and I wish the gluten zealots would accept this.

For me, the jury is still out as to whether avoiding gluten is helping my reflux, but as for anything else it’s a dud I’m afraid.  In fact, I’ve felt absolutely rubbish during November and have had the least energy I’ve had all year :-(  Trust me when I say I was hoping with all my heart that avoiding gluten would make me feel like a new woman, and I’m more bummed than anyone that it hasn’t turned out that way.  Onwards and upwards.

What I did discover in my gluten-free quest was a really good pizza base flour mix.  It’s made by Isabels and is also yeast-free.  You buy it as a packet flour mix ( sorry, it does contain milk powder for those who avoid dairy) and you mix it with egg, oil and water, knead it, roll it thinly, pre-bake it for 10 mins, add your pizza topping, and then bake for another 10 minutes.  It makes a thin crust pizza and you get about four 9″ pizzas out of one box (containing 2 packet mixes).  I used one box, ate one pizza fresh, rolled out the other 3 and froze them.  You can then just bake straight from the freezer.  The only mistake I made was rolling out the bases too thinly and next time I’ll do them slightly thicker.  For the topping I used my red pepper sauce, fresh mozzarella cheese and veg.  I’ll put the details up on the recipe page when I have time – it’s available to buy from select ASDA and Booths stores or online at Amazon.

Photo of gluten-free yeast-free pizza