LUPUS UK
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Feel Like a Hippo

Hi everyone, I am still fairly new to this site. So still finding my way.

Feels like I'm blowing up like a balloon. I've been gaining wait but it feels so uncomfortable. It must be water retention at a guess. I had negative bloods for Lupus but have all other symptoms. I also have EDS (still determining type, but many of the other illnesses that come under the EDS umbrella) and most likely Sjögrens. But today my kidney area is inflammed and body feels swollen. I've gone from 7.2 to 8.7! But not eating like a Hippo!?!

Has anyone else felt like this? Can't cut much more out of my daily intake.

I'm off to Dr Hakim next week, so hope to have more answers as well as local Rheumatologists. I hope I don't POP first 😉

🌻🌻🌻

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Hi - I was slowly gaining weight, and verging on diabetes (as if we don’t have enough to cope with). Refusing more medication, I stopped eating bread, cake and biscuits. I was not a big eater either. It was tough for a day or two but I started feeling more comfortable after that! Amazing how much damage sugar, bread etc can do. After 3 months I am not bloated and my blood levels are good. It is the energy returning that has spurred me on too. Give it a try, it isn’t a diet just a realignment in your eating. Good luck

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Thank you for your help. I can't eat most things because of IBS. Eating isn't the answer this time, but thank you.

🌻🌻🌻

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Could it be one of your EDS manifestations?

Is Dr Hakim helpful? Someone might have already said, "IBS" is a "functional" GI issue, not a formal diagnosis of any sorts e.g. Crohn, diverticulitis, Gluten-sensitive, Constipation, other inflammatory gut disorders with specific names.......etc. BC might have mentioned this, so as a few other posters on this hub. Could be worsened by the rheumatic medications and the level of dosage. Which ones are you on? Please not to mention if you feel uncomfortable. :)

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I was wondering if it was a Lupus symptom. But it absolutely could be anything.

I'm seeing Dr Hakim Wednesday so I hope to have more answers.

Not taking any meds for Rheumatoid (I have Osteoarthritis and low bone density) and at a guess Sjögrens and as above possibly Lupus, would like to be wrong on Lupus, but it feels like a flare up when stress is involved. Yesterday dentist saw symptoms of Sjögrens as well as Ophthalmologist.

I have just started Mebeverine for intestinal spasms. Spasms seem to be one of the biggest issues through my body since I was about 5ish. I used to be bed ridden for a few days because of back spasms. Mother had them so it seemed normal. No medical advice ever sought until I was about 30 when neck wouldn't move.

But yes I think I may have 'Leaky Gut' but guessing, could be a number of different problems would love a real diagnosis. IBS umbrellas so many illnesses so I've read.

Thank You very much for your time, apologies for book. Probably too many thoughts running and loneliness is a bit overwhelming just now 🌻🌻🌻

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Hi Ladyuponthelake,

How frustrating! I feel your hippoptamus-ness. And awfully sorry to read about the overwhelming sensations and loneliness. I guarantee you're not alone though.

I've had something similar happen to me starting 7 months ago. I'm a swimmer and hope each day that I will still fit in my swim costume. Like you, there is no reason on earth that I should be gaining weight as I've not changed my diet and I'm very active. I'm a light to moderate eater with lots of fibre and virtually no cakes or sugar. Yet...I am blowing up with distended stomach, weight gain and a sudden change in bowel pattern (to pellets) that I can't seem to alter with an even more fibrous diet.

Because I've had cancer in the past, I had a colonoscopy followed by a CT just last month. The colonoscopy showed some diverticular disease (like most people have); and the CT showed that I had generalised faecal loading. So basically my colon is full at all times, which I'm guessing means that the natural elimination process must have slowed way down. I'm not sure why exactly yet and I'm not sure if I'm going to get much help on this issue other than taking Movicol sachets for the rest of my life.

The only thing I know is that a couple months after my first Rheum appointment last summer, where I received an UCTD diagnosis, this started happening. I'd not been put on the Hydroxychloroquine yet and no steroids, so medications were not the culprit. My suspicion lies with the connective tissue disease itself because I have nerve fasciculations now (utterly new) as well as a terrible episode last summer after sunshine and sea, where I had shooting nerve pains for a couple months. So this leads me to wonder if the nerve reactions could affect the bowel. This makes your spasming interesting in the same way. It sounds like you're thinking in a similar direction.

My Rheum said the bowel wasn't her area, which just pushed me back to the GP and Movicol, but I've read on a John's Hopkins website that they are looking into the idea that bowel issues can be caused by Connective Tissue Disease. If this disease can affect virtually every other organ, why not bowel? It is clear that bowel issues are common with people with Lupus and other connective tissue diseases, so I'm unsure why there hasn't been much forward motion on this or why my Rheum thinks it's not her *area*. If yours has an answer I'd love to hear it!

All best with your appointments ahead.

Panda

x

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Thank you for your input. I'll post when I get info back from both Rheumatologist.

🌻🌼🌞

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