Am I right to be doing this?

Hi again Eileen.

Thats ok I don't mind you being curious at all..

:wink:

Yes, I did go through additions to control my BP. I started on just one tab, but can't remember which one it was, as it was so long ago.. :D

My BP has always been on the high side. High BP is something that I inherited from my dear late father. My sister and mum have always had good BP readings, but that's life I suppose.

My onset of my IBS started around Christmas time last year. I was diagnosed with PMR in November. But saying that, I had been suffering muscle pain and inflamation for about six months previous to that.

Oh..and to add to my woes, I also had a nasty bout of Labrythitus in September last year too, which was not good combined with aching muscles.

All these conditions have followed the death of my Mum in the previous Februrary, followed some rigourous and sometimes upsetting clearing of my mum's house.

They say that PMR can follow a stressful period in one's life, and IBS is notoriously connected to stress. I have always believed this to be the case with me.

Gilly.

Hi again!

Did you know that PMR (at the GCA sort of end) can also cause abdominal pain and problems as well as ear problems? I had vague and annoying abdo pain and tinnitus all the time I had the \"mild\" version of PMR before it went into overdrive two and a half years ago. All disappeared within a few months of steroids. Just found the association interesting!

Your BP - you'll have started on the diuretic (the bendro one) and then the others come in a usually fixed add one and see what happens regimen. If it works why knock it.

do keep in touch,

Eileen

Thanks Eileen. I will keep in touch as I still look at the forum regularly as I find the advice from the ladies and gents on here better and more informative than my doctor's ..

Yes, I seem to be ok on my BP tablet mixture But with medication for PMR and IBS also, I sometimes feel like a walking chemist shop!

I also now and again get attacks of tintagel neauralgia..Well at least I think its that. Which is sharp stabbing pains at the top of my head which come in waves of a couple of secs on the scalp.

An attack like this can last from 1 to up to 5 days at it's worst. I have not had one for a while though thank goodness.

Once again I have been having these attacks on and off for years. My doctor does not associate this with my PMR or GCA.

I sound like a right old crock don't I? :D But as I keep saying, in spite of all this I am feeling quite well and lead a normal active (when I can) life.

Gilly.

Hi GillyBee,

For a few years before I developed PMR I had dreadful IBS (co-incided with my Dad being very illl and eventually dying). Went for gastroscopy/ colonoscopy as drs thought I had coeliac disease but all tests came back negative.

I eventually went to a Naturopath as i was slowly fading away(plus spending my life in the loo :oops: :cry and she diagnosed candidiasis and wheat intolerance.I did a complete aversion therapy for a few weeks then slowly introduced other foods to see what caused a problem...for me eggs and wheat :shock:

I now follow a wheat/egg free diet and the difference is amazing...OK, I am a bit underweight for my height, but I no longer get awful bloating and the runs after meals and can go out without worrying where the nearest loo is :wink: '

I don't think that anyone who has not experienced this problem.....a bit like PMR, can truly understand how much it can affect your day to day life, let alone your social life .

It is all well and good for Doctor's to declare that you have IBS...but there is something out of synch in your body that is causing it to occur, and until you find that cause, you will continue to suffer,and having worn that t-shirt for a few years it is not one I wish to put on again.

I know a lot of GP's do not adhere to the idea of \"food intolerance\", but lots of health food shops here do testing, as do homeopaths, so it is well worth checking out if it gives you relief from one of your health issues.

Love,

Pauline.

Hi gillybee

When I was taking the beta blocker, Atenolol, there was suddenly a lot of reporting in the media about beta blockers combined with diuretics carrying a risk of diabetes and I remember eventually reading that doctors were being advised to substitute a different medication to the beta blocker unless the beta blocker was being prescribed for a heart condition in which case the benefits to the patient outweighed the risks. Just might be worth getting your Dr's opinion on the Atenolol+diuretic=diabetes risk

I had been taking Atenolol for 2 years when I developed PMR and at the time I remember reading an article that made me suspicious of Atenolol in my case. However it was within days of switching from Atenolol to Ramipril that I then went down with GCA!

BTW I also suffer from the stabbing pains of neuralgia in my head/face that you describe and I seem to suffer more of a weakness to the condition since GCA. I have now learnt that a windy day can aggravate it and I never go out without a hooded coat or jacket or a warm scarf in my pocket.

I'm sorry to hear that you suffer from IBS as well - a daily small carton of 'live' yoghurt may help if you don't already eat it.

Keep well,

MrsO

gillybee - I'll add my bit to Pauline's comment. I too react to highly commercialised wheat - the worst problem was a very itchy rash and there was some thought for a while it might be one form of coeliac disease but dermatology was hopeless and the local gut specialist said if you can control the symptoms that's fine, no point looking any further. I don't react to gluten per se - I eat rye, barley, spelt and kamut with no problems - but eating wheat again more than just once or twice brings back the rash a couple of weeks later. I had allergy skin testing at the immunology dept but it showed nothing and the gut specialist thought it was probably a gut-mediated problem (i.e. it was something in the way it is absorbed that is the problem). I didn't do any other testing but realised all the rash disappeared after being on an Atkin's style diet - no carbs! AS well as the rash I used to have an \"irregular habit\" and awful wind. Never as bad as Pauline describes but unpleasant and painful. Both daughters also have a similar problem, the older is particularly badly affected and she knows if she eats much wheat she will suffer - doesn't stop her though :roll:

And the head pain you describe - something similar has been mentioned in PMR/GCA literature. Just a thought.

Eileen

Google, ibs+nhs+uk and read it.

It looks as though your GP is not up to speed.

Knowledge is power.

Yes - I totally forgot I wanted to say that a diagnosis of IBS should only be made after EVERYTHING else has been ruled out.

For a lot of GPs it is an easy answer to hand out to women with these symptoms. My daughter was told that - in fairness she was also not given any other medication that night havbe been wrong - but that was it. The same GP also wrote her prescriptions for the pill - and we have 2 grandchildren as a result who, although loved dearly and we wouldn't send them back (most of the time :wink: ), could have been conceived at a more convenient time! IBS plus the pill = not secure contraception. Ignorant GP. And telling older women it is IBS is to ignore the possibility of other less benign problems.

Eileen

[quote:dbf7afe116=\"mrs k\"]Google, ibs+nhs+uk and read it.

It looks as though your GP is not up to speed.

Knowledge is power.[/quote:dbf7afe116]

Hi again ladies.

Well yes, he is not the most sympathetic doctor in the world. And he is enclined to play down the seriousness of my IBS symptoms.

Although saying that, when it first appeared this time he did run quite a few blood tests which ruled out the sinister diseases such as chrones and colitus etc. And I have recently taken the NHS Bowel cancer test and it came up ok.

At the moment my IBS seems to be in control. So fingers crossed!!

And with the gradual improvement of my PMR as well, I suppose at the moment, I should count myself lucky.

Gilly.

Hi Eileen,

are you well versed on Gastric problems, and if so may I pick your brains a little please? My 38 yr old son has an ongoing stomach problem, which he's had for years now, He suffers frequent bouts of sickness and diarrhoea, has a lot of stomach pain and his blood count drops and he has to go to hospital to be infused, every so often. He has had all sorts of tests colonoscopies, blood tests, you name it and he's had it. Last year he spent a week in a teaching hospital in Sheffield under an eminent gastroenterologist, undergoing more tests. They cannot come up with a name for his condition. They've ruled out the nasty stuff, Leuchaemia and bowel cancer. My daughter in law is convinced it's Crohns as his symptoms all fit, but the medics say it's not, as there is no actual damage to the bowel which there would be with Crohns. They've ruled out IBS. He's had allergy tests. To add to his problems, a couple of weeks ago he was admitted as an emergency with severe back and stomach pains, this was attributed to an inflamed pancreas. He was always a very fit child, very sporty, competition swimmer etc, he was also quite well made but has lost a lot of weight lately. As he's in the armed forces, and having been posted out in the Gulf a couple of times, they drop back on \"it may be something you've picked up abroad\", but he's had all the tests for infectious diseases--all clear. He is managing to hold down his job at the moment, the RAF are very understanding. I want to pay for him to see someone privately, but he wont let me. It's an ongoing worry. I hope you don't mind the fact that this is not PMR related, but you're so well informed about medical matters, I thought I'd ask you! Thank you in anticipation, Molly.

Mollycoo - what a horrible situation! I'm afraid though that my gastric knowledge is limited - apart for for my own allergy problems! I've worked in a wide range of hospital technical fields but the gut was never part of that - husband's field is oxygen transport and I started in the path labs originally but also worked with him.

If he's had scopes done it does reduce the likelihood of most of the things you'd think of like coeliac disease, Crohns and ulcerative colitis etc. He's obviously either malabsorbing or bleeding to be repeatedly anaemic but the scopes should have found any of those causes. The 3 I've mentioned all have similar symptoms in some ways but usually have damaged tissue to be seen. Another very rare possibility could be Whipples disease but I would have thought there would be something to see there too. Cryptosporidium infection would be another uncommon reason for the symptoms but it is very unusual in an otherwise healthy person.

My wheat allergy doesn't show up on allergy testing and is thought to be a gut-mediated problem - the gut wall is \"leaky\" and allows the wheat protein to cross the cells and cause the trouble as an immune response. This was suggested by a conventional NHS gut specialist, not one of these airy-fairy alternative practitioners who plug the \"leaky gut syndrome\" as causing a multitude of woes - because you'll find them all over the internet!

But - have they done the tests during an attack? He obviously has periods between where he isn't so bad. Is the pain localised in any particular part of the abdomen? This is a very wild stab, but as you have PMR/GCA there is probably a genetic trait present in your family and I wonder if there is any chance it might be a vasculitis affecting the gastrointestinal tract. That can mimic Crohns. Has he had any other signs or symptoms? Any skin changes, joint pain (well, anything like you had with PMR!), anything besides the gut trouble? There are so many symptoms that autoimmune disease can show up with and they may be very vague and resemble all sorts of things. How is the abdo pain and vomiting and diarrhoea related to meals?

The trouble with going privately is that you are often merely paying a lot of money to see someone who probably also works in the NHS so still may not get an answer - which he obviously needs. It's different if you have a specific problem and want to see the best person for that disease - but that means needing a diagnosis first of all, or at least an idea. His week in Sheffield would have cost thousands privately and you might have seen the same consultant! The food might have been a bit better though!

And you know - this is PMR-related. The stress won't be doing you any good either and talking about it here means you have at least shared it with us. I certainly don't mind - I only wish there was more I could say to help. But I would ask if there could be any possibility of a vasculitis - if it is intermittent and not yet very severe they wouldn't necessarily see damage inside the gut, the signs will be in the blood vessels.

Do try and answer some of the bits I asked and I'll think/search further - I did find something that was quite similar in description in many respects. Maybe there's more.

Eileen

Hi Eileen, and thank you so much for taking the time to research and reply. Bile acid malabsorbtion was what they came up with in Sheffield. He's had some tissue damage repaired recently, but it was damage they'd caused during one of the many colonoscopies. No skin changes, and no joint pain. No he's never had tests done during an attack, he was fine the week he was in Sheffield, except for the pain induced by the bowel prep he had to take!! It's general stomach pain, but the diarrhoea and vomiting, is the most troublesome. The attacks come on quite suddenly, he can be dining out or something, and suddenly have to rush to the loo. I'll mention vasculitis to him. Just been speaking to him on the telephone actually, and at the moment he seems pretty good, so long may it continue. He has a busy life. Apart from his RAF career, he's very involved in local politics, and at present is deputy mayor of Carterton. At the ceremony marking the return of repatriations to Brize Norton, he was the one receiving the flag from the mayor of Wootton Bassett. We watched it live on TV, and felt very proud, as he'd just been discharged from hospital 6 days before and wasn't too well really. If he has an important engagement, he eats next to nothing the day before to hopefully be OK the following day Many thanks again Eileen for your interest, it's much appreciated Cheers, Molly.

Mollycoo,

I can relate to what your son has been experiencing so well :cry:

At the dinner on the evening I became Lady captain of my golf club, I suddenly became ill during dinner.....having been ultra-careful with what I ate :roll: .

I ended up in the loo for ages and had to let the my speech be given by my secretary :oops: . Thankfully, I was among friends who all knew that I was having stomach problems, but it was just so embarrassing and frustrating.

When I was in hospital prior to my PMR diagnosis, they also discovered that I had Pernicious Anaemia (also an auto immune disease), which affects food absorbtion and I am now on injections every 3 months to keep my viatamin B12 levels up.

I do hope that your son's doctors can get to the root of his symptoms soon and get him back to full health, as I know from bitter experience just how miserable an unreliable gastric system can be

Love,

Pauline.

Hi Pauline,

sorry you've got problems in that direction too. It must be miserable, and so disruptive at times. Adrian has had tests for pernicious anaemia and it's not that. My father had pernicious anaemia in later life and had to have B12 injections every 3 months, but I don't remember it upsetting his digestive system, more extreme tiredness, he knew when his injection was due, and had a new lease of life afterwards! I know of no-one in my family who has had any stomach problems at all.

I think this is something my son is going to have to live with (at one time we thought it was something he may not be able to live with) but I wish they would come up with a name, and then perhaps introduce more effective medication. He takes painkillers, stomach calmers, anti sickness tablets and iron, to no great effect really. He's waiting to go for another scan on the pancreas. They don't know if the two problems are connected. He's a very upbeat sort of person, and keeps very cheerful amongst it all, he does in my presence anyway!! Thanks Pauline, Best wishes, Molly.

Hi again to all, and apologies on the topic diversion to stomach issues.

So sorry about your cone Moolyco. And sorry too Pauline that you have been diagnosed Pernicious Anaemic. Your Golf Club dinner experience sounds horrendous.

It seems that if you suffer one auto-immune condition, as us PMR sufferers do, ther is a good chance that you could suffer with others too.

I can't help but wonder if there could be a connection here with some of the stomach related illnesses.

Obviously some of us are more prone to auto-immune conditions than others, and some stomach and bowel problems will be just more nasty auto-immune conditions to add to the list. So maybe PMR sufferers will be more susceptible.

I also wonder about the how having PMR and taking steroids effect the adrenal gland? It's apparently the adrenal gland that plays a big part in controlling the stress levels in brain to body messages. IBS is notoriously known to be brought on by stressful situations. Could there be a disfunctional adrenal gland connection here?

Just a thought..maybe one for Eileen?

Gilly.