I Think I'll Be OK, but a bad 24 Hrs So Far

[Lupiknits]

This is a bit graphic, so please skip if you are eating. I've been aware that I seem to be flaring the last few days, with joint pains and swelling. Last night I went for a quick meal out with my son. These occasions can be hit or miss in terms of how much I can eat, get down my narrowed gullet and into my stomach. This was a miss! I could only manage a little, then was up until 3am trying to get it "down" and take meds, so they could get down, too. I was chilled to the bone, too, although it isn't as cold as it has been.

When I got up this morning, it was as if my stomach was in reverse (not vomiting, but as if the muscles were pushing the wrong way). When this has happened before, my routine is to sip water and sort of regurgitate (sorry) to clear the blockage. Once my innards start to gurgle, I know the blockage has gone. It's started now, so that's 24 hrs. No meds, because they can't get through and taste foul when they come back.

On top of that, the pain is quite bad. I've only passed a little urine since morning, and I got a fright coming downstairs when it seemed my legs gave way at the knee. Managed to grab the bannisters to get my arms to do the work. The knee thing has happened in the past - I had to tell physio that standing and locking my knees as she suggested = faint and knee giving way. I'm long used to avoiding anything that makes my low blood pressure hit the floor, but the knee locking thing took me by surprise. It seems I only do that (and very easily) if I am sitting or lying down, and she noticed that when I walk I'm very flexible but don't "lock" my knees as she thought I should. Has anyone had a similar experience?

Now I just have a bright red face and stone cold hands. Sweaty, and heart beating hard. No temp. The water's going down and I'm craving salt - might get out the marmite and a teaspoon, but I must cencentrate on hydration. Banging headache, so much of the day has been half- lying, propped up on the sofa, receptacle handy, and sleeping on an off with an audiobook playing. Back to chapter three for the plot next time around.

May have to see a GP in my new practice tomorrow.

[Mifford]

I can't offer any advice I'm afraid but you have every ounce of my sympathy if it helps at all. Hope you feel better and get things going the right way (see what I did there) soon x

[whisperit]

Like mifford, I've no advice, only loads of sympathy. Its so draining when all your energy has to be poured into managing the moment to moment symptoms and trying to make sure nothing gets worse. Here's hoping you get a good night's rest x

[Lupiknits in reply to whisperit]

You are both good pals! The great thing about this forum is the support x

[LuckyJC]

Do you know what causes your swallowing problems? I ask because I'm diagnosed with a condition called eosinophilic oesophagitis that causes similar problems. I've wondered if there's a link to my Connective Tissue problems but rheumy says not

[Lupiknits]

My problems manifesred themselves initially in this way after stomach ulcers and ulcers in my oesophagus led to strictures making it difficuly to eat, and slow motiity in the stomach itself. I've lost a trendous amount and am really hoping to be able to gain,

Next it was swollen inflamed joints. At the moment the specialists are happy to see it as an auto immune problem, i'll add, too, that their feel they are all related in some way

[Petrof]

This sounds very much like MCAS that I am looking into at the moment as the cause of my problems. Some of the symptoms are like mine. Mast cells producing too much histamine may be the culprit. This is a very simplified explanation. Look on the internet for more info.

[Mellisa1066 in reply to Petrof]

Ive heard of this aparently there is an american woman who speacialises in this my GP gave me her name , must look for it.

[Petrof in reply to Mellisa1066]

Is she working in the UK?

[Mellisa1066 in reply to Petrof]

Petrof

No American Doctor but you can look all her info up online and utube my GP says she does facinating work.

Her name is

Diana Driscall

HMSA website EDS UK

MCAS

GP Advised for me to start treatment with Ranitidine & Fexofenadine 180mg daily and non histamine foods.

They are very aware of this disease more in America aparently but its so hard to diagnose as symtoms all over body people end up like me seeing 5different consultant but dont put symtoms together.

Want to check with my Rhuematologist first and see what she thinks if my stomach tests have no other come back with other tests apart from oesophagus dismotility then its worth trying as if food does get past oesophgus and stay's down the pain is horrific for hrs . Consultant is also recomending nerve pain killers. Im getting desperate with nearly 6st weight loss.

[Petrof in reply to Mellisa1066]

Thanks a lot, I have lost 5-6kg, it is terrible. I have to say the low histamine and low fructose diet really helped with the digestion - much less bloating and stomach pains and acid reflux completely stopped. But I am still not putting on any weight. And as soon as I eat certain things like nuts or fruit, problems get worse very quickly...I had to actually exclude so many foods because of the pain that they caused. Only months later I have realised that what I eat is actually low histamine/fructose diet.

I am also on Ranitidine (two weeks on 150mg and from today two) and Cetirizine (one a day), so far the only improvement I have seen was a little better appetite. But that does not help because if I eat too much, I start having stomach aches. I will keep taking it at least for a month and if no improvement will ask the GP for another one.

What are your other diagnoses? Mine is Lupus with extremely high Antiphopholipid antibodies.

It is great your GP is aware and know a fair bit about MCAS. My GP is aware and very supportive but I am not sure how much she knows. But having a supportive GP is already a huge advantage...

Have you read the book from dr Afrin Never Bet Against Occam? When I read it, this was the first time, when I saw that other people also have these really weird symptoms, that even my reumathologist says are unlikely Lupus related.

Please, let me know how you are getting on. It is so reassuring to be able to share experiences with somebody who has similar problems.

[Mellisa1066 in reply to Petrof]

Hi petrof

It is good to talk to someone with same sorts of issues.

I have MCTD

Lupus/SLE

Sjogrens syndrome

Arthritis

Which has caused alot of organ damage , vascular damage which caused my kidney to be removed and bypass to right kidney and a mid aortic graft fitted due to blood flow cut off. Thats why they thought they would check my blood flow to my stomach with CT last week and bowel as when they did surgery they said there was some narrowing elsewhere to keep an eye on as if the stomach wasnt getting enough blood supply it would have issues breaking food down.

I have the oesophagus dismotility too.

Recurring pericarditis

Problems with chest pain ( no idea why they think nerve issues)

Joint problems due to arthritis caused by lupus , which have improved since the 4 weekly adacept bio infusion at hospital.

I take hydroxy 400mg daily but have stopped the steriod injections last jan as they were giving injection every 4-6weeks for 2years and only worked 2 weeks and then i was in agony again. Bio infusions better for me with joint pain.

Also had another adrenal test last wk as my levels were low last time and they thought stomach problem could be due to stopping steriods suddenly a year ago and pain , nausea and vomiting have slowly got worse can be a prob caused by steriods halting suddenly which i never new.

and a horrible test sample of poo (sorry) just to test it to see if anything shows up in that.

Thanks , I will look up that book as im desperate to try anything, i miss food so much and now only on these build up prescription drinks which make me sick too as they are like milkshake (fortisip) need to look up what food is histamin free as i have no idea yet new to this info, will bring it up with Rhuematology consultant and see what she think's but going to get started on trying food again (Histamine free food)

Please keep me updated about how you get on or any new info.

[Petrof in reply to Mellisa1066]

Thanks.

[Petrof in reply to Mellisa1066]

You have a lot to deal with, I am sorry to hear that.

Re low histamine:

This is the list that I refer to: food-intolerance-network.co...

Generally, I can eat chicken breast/thighs, turkey steak, occasionally pork very lean or lamb steak when I feel good. White/brown rice, new potatoes, baked potatoes and sweet potatoes. Courgettes, small portion of broccoli, carrots, fresh boiled sweetcorn. Eggs boiled. Gluten free cereals but not all, some of them have something in it that aggravates my stomach burning I am not sure what it is, GF bread, rolls but again only some of them, they still make me bloated. Occasionally I can tolerate spelt sourdough bread. Everything has to be freshly cooked or frozen asap. Wild blueberry jam is fine. Occasionally I have something else but I usually have some reaction. On Friday I had two small GF apple pies and the burning came back as well as low abd. pain that I could feel to travel through my digestive system. Only about now it has calmed down after I was having a bit of shaking of my whole body. It usually takes three days for the culprit to get through the system..but at least I know it will happen as long as I can be strong and not have something else..

[Mellisa1066 in reply to Petrof]

Is this paleo diet any good ? Ive bought a kindle book to look at.

[Petrof in reply to Mellisa1066]

I have not idea what paleo diet is. I just eliminated food that was causing me pain and reflux and other digestive problems and ended up with something like low histamine/low fructose diet...

[Lupiknits]

Thanks Petrof. I've been wondering along these lines , and it's good to know where to lool

[PMRpro]

Sorry if everyone else knows this but I can't remember. Have you had any proper investigations on this somewhat dilatory gut motility problem? And have you had your adrenal function checked? If you are craving salt - there is probably a good reason for it and a low sodium level isn't too good for your body!

And sorry if you already know this but it isn't just hydration with water - you need to hydrate with isotonic drinks, not just water or you get "water drunk" (water intoxication) where your sodium levels go too low. Signs include

"... the first observable symptoms of water intoxication [are}: headache, personality changes, changes in behavior, confusion, irritability, and drowsiness. These are sometimes followed by difficulty breathing during exertion, muscle weakness & pain, twitching, or cramping, nausea, vomiting, thirst, and a dulled ability to perceive and interpret sensory information."

[Lupiknits in reply to PMRpro]

No problems, Pro, and thanks for the info - I should have made it clearer I was dropping an isotonic tablet into the water. I call this my "electrocution drink". Most of the water helps carry up the blockage. I have a plastic measuring jug (marked with a big red cross) that the blockage is gradually deposited into, so I can measure what goes in and out. I get more concerned about dehydration than water toxicity.

[PMRpro in reply to Lupiknits]

I assumed you probably did - but others looking in ...

Get Well Soon...

[EOLHPC]

Wish you weren't up against all this...seems to me your one vvvv courageous person.

And am so glad you posted about all this, LK: every detail is important & can help others trying to understand their version of this. I would've been hugely grateful for this discussion years ago when my infant onset lupus diagnosis was still unrecoverable and I was feeling isolate + scared cause had been coping with undiagnosed chronic upper GI oesophagitis with metaplasia + gastritis + gastroparesis & duodenitis for many years being told by gps it was all "normal".... now we know it's not....and my immune dysfunction + connective tissue disorders are diagnosed + I'm doing ok on treatments etc. So am v much relating to both your description & to all these great replies....and I feel certain others here are too

I hope you managed to get some decent sleep last night...and that you're coping ok..please let us know what your gp says

Take care

🍀😘🍀😘🍀😘 coco

[Mellisa1066]

I too am getting same symtoms as you since I have been diagnosied with oesophagus Dismotility . Unfortunatly they cant do much and said this can actually be quite common with lupus and other connective tissue disease's . I now live on only thin soup or fortisip build up drinks and have lost 5 nearly 6st now since last April.

It was so nice but horrible of course to find someone suffering with one of the exact same issues/symptoms.

Do you find you start getting a very fast heartrate soon after eating ? All your other symtoms are exactly the same its unbelievable. I thought most of the time the dizziness with me gets worse due to lack of food as I obviously used to avoid the solid meals as I new first the reguritating starts then the cramping bubbling solidly for hours and just terrible nausea and pain and rolling around the bed all night or day depending when I had the food. I found the worst thing was Bread so that was off the menu first , then found more and more solid food was a problem as narrowing got worse ,as it was just as bad coming up as going down. I was tested for celiacs disease too as both my daughters have it but im all clear. As they understand the getting the food down issue with dismotility but not the pain in stomach , cramping bubbling etc

They are testimg my adrenal gland too as i was on high Iv and joint steriod injections every 4-6weeks for a few years and due to feeling crappy I just stopped them last January as no one told me the dangers of stopping steriods suddenly.

They also have done a CT scan to check blood flow to my stomach etc as not enough blood sent to stomach will cause issues . As my aorta just above the kidneys was attacked and narrowed and I have now had a graft fitted to adominal aorta and to my artery to my right kidney and left kidney removed due to lack of blood it had died but they fixed me and all good there now. Just could be happening stomach wise they think , just had the CT Monday so we shall see. Lupus is so crap!

Think they are just giving me a full MOT just to be sure as they said oesophagus dismotility is difficult to deal with but could be another issue making things more uncomfortable ( my oesophagus dismotility was diagnosed with a barium swallow and a strange slanting bed)

They are going to put me on nerve pain relievers that work on the nerves in the stomach to see if that helps too. if i try to eat i need codeine, oramorph etc the pain gets so bad and im no softie with pain. No solid food , no pain at the moment unfortunately for me at the moment.

Sorry cant give you advice but only comfort you, as in I understand how difficult it is , plus you think your going mad until it gets diagonosed and I thought am I doing something wrong .

It gets you down as food is such a pleasure,I certainly miss my solid meals alot but the pain etc became just too much for me. Hopefully I may get more news soon. Goodluck and keep strong speak to your Rheumatologist or your stomach consultant ( my Rheumatologist was more help) everyone is different and try and get them to investigate more things .

[Lupiknits in reply to Mellisa1066]

Thanks Melissa. I've had two gastroscopies and a barium swallow. It all started with what seemed to be acid reflux, which I put down to stress. By the time I saw my GP I was whisked off with suspected malignancies. Unfortunately a lot of damage had been done. Nothing sinister, but the oesophagul ulcers have healed with scarring and narrowing. The swallow showed very slow stomach motility. I take 2 x 20mg Omemprazole twice a day, which I'm not happy about, but it does mean no reflux.

I'm sorry for the pain you get - that's rare for me with eating, because I usually know what and how much to avoid. After over 3 years I sadly know that anything the slightest bit acidic, spicy, or alchoholic is a no go. After much denial, I realise coffee is the same.

As to eating normal food - there are days I simply long for a sunday roast but know there's no chance. I've lost quite a lot of my appetite, too. I'm trying to gain weight, doing the "little and often" I don't want to be negative about it, but get frustrated when others really haven't experienced how long it takes to get the "little" down, and then it's time for the "often", I'm tired, and don't have anyone to serve me!

I'll ask about my salt craving, though that isn't recent. Love the stuff, and no problems with blood pressure. X

[Mellisa1066 in reply to Lupiknits]

X

[Petrof]

I have lost 5-6kg in the last 6 months but the weight seemed to have settled now. I gradually had to stop eating dairy, gluten and high histamine food. I have to say that my digestive problems are much better now but only with the limited diet. (Chocolate gave me 10 days of terrible headaches, bread terrible bloating and reflux etc. I also get indigestion when I eat bigger portions - I am trying to put on weight but unsuccessfully). The blood test showed thankfully that I have now vitamins or minerals deficiencies at the moment, which is reassuring. But I still get other symptoms...

[Hidden]

So sorry but I failed to see this post LK. You poor thing it sounds dreadful. I can relate a little but only a tad - having problems often with swallowing and occasionally all comes back up. So just enough that I can slightly begin to imagine and sympathise enormously. I do hope things have got better in the two days since you posted. Twitchy Xx