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cristiana

Waistbands etc - ouch!!

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I don't know if I'm putting this in the right category as I'm not sure if it is a celiac thing, but I wondered if anyone else suffers from pain with waistbands or anything that is at all constrictive around the abodomen/torso.

This is something I never suffered from before my diagnosis, but I get it all the time now - anywhere there is any pressure, from sort of bra level down to the lower abdomen, I get a really nasty, burning feeling if I wear anything that is too tight.  I have had it for nearly five years, on and off, and am in the middle of a flare right now.  It is odd as it only ever affects my left hand side - but when it happens, it is debilitating.

I have had all sorts of tests - sigmoidoscopy, ultrasound, endoscopies, you name it.

Can anyone relate?  

Thanks!

 

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That is bazaar! Have you had any neurological testing done, say like scans of the spinal column or brain? The asymmetrical nature of it makes me wonder if there is a neuro basis to your symptoms. Shingles is another possibility that comes to mind.

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1 hour ago, trents said:

That is bazaar! Have you had any neurological testing done, say like scans of the spinal column or brain? The asymmetrical nature of it makes me wonder if there is a neuro basis to your symptoms. Shingles is another possibility that comes to mind.

Hi Trents - and thanks.

Shingles was suggested but I was told it was odd to have it on more than one dermatome - the pain does major along two of them, at chest and hip level.

I've had MRIs of my spine and brain since DX and nothing appeared to be amiss.

It is odd how it goes into remission.

Someone rang me the other day to say her daughter has terrible pain and has been DXd with fibro, and suggested that is what I have, but does Fibro happen just on one side?   

The pain is at times frightening, but then it goes.  I've had my heart tested - ECG,  O2 levels normal, normal pulse, normal blood pressure.

Last night was dreadful, but I woke up again this morning without it.

Sigh....

 

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I have the asymmetry pain as well. Flares and yhen stops. Drs want to say Fibro but found many things in my bloodwork and genetic tests. Have single chrom for MTHFR so adding 3000 lmethylfolate helped pain intensity from bedridden to mobile. Have elevated Centrimere meaning immune system is attacking myelin around nerves in arms, legs, hips, shoulders. Get pain and have inflamation with movement especially repetative. Arnica tablets help and safer than Naproxyn which is back up. My chicken pox and epstein barr is high also meaning always fighting them. All pressure is uncomfortable. Ice and accupressure points help.

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If everything checks out, then blame autoimmune!  Whatever is flaring, my gastritis (AI) can impact my other body parts (achy, headache, blah!).  

My Mom has fibromyalgia.  Her pain tends to move around.  She can use her hands one day and then not be able to carry or hold anything.  The worst usually occurs in her shoulders.  She can not stand wearing a bra.  We have tried every bra in the retail world.  It is so frustrating.  The Band causes pain around her chest.  The straps cause pain.  She has tried camosoles, pasties, you name it.  Really in today’s fashion, you need a bra.  A corset  is out because that is too restricting too.  She comes home and on goes a MU MU dress.  

I can not tell you the number of times she has landed in ER because of her crushing chest pain, but it is always fibro.  She also gets a weird cold sensation deep in her chest.  That lasts for a few hours and then she is fine.  No comfort or or heating pad takes the cold feeling away.  This happens in the heat of summer! 

So, maybe it is fibro or some AI issue.  For me, I am trying to focus on diet, exercise and reduce stress.  Not sure how successful I will be, but I want to avoid medications and my doctors know this.  

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I used to have abdominal pain that finally went away when I stopped wearing pants with an elastic waist. I even have to make sure that undergarments aren’t too tight around the waist.  Sometimes when I sleep flat on my back I wake up with abdominal pain.  I sleep with a wedge to avoid that.  

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Hi everyone!

Thank you all so much for responding.  You have given me much to think about.

I do think that the way forward is the Demis Roussos kaftan for me.  I'm beginning to wonder if, like your Mum, cycling lady, I'll ever be able to find a bra that actually doesn't cause pain.  I bought a new one on Tuesday and have been in so much pain since putting it on.  Yet it was meant to fit me perfectly and not cause these problems.  I have a collection of them that are absolutely no good at all - ranging from a Rigby and Peller Rolls Royce of bras (they had the royal warrant) to one of those budget ones you can buy in older persons magazines that aren't meant to hurt!  All absolutely no good at all. I now also have skirts with elasticated waists, and dresses with empire lines, that are almost unwearable.  

Sorry gents for the rant!!

The idea of uticaria is also interesting - as I find certain clothes do cause my skin to feel very irritated at certain pressure points.

I must admit my stomach symptoms are greatly reduced by wearing loose garments.

It  could well be a nerve thing too.  And shingles - that has gone through my mind often.  Someone I know who was 'fortunate' enough to have the visible rash - I have been told that is possible to not be able to see one - said to me, "The thing I don't like about shingles is how would I know if I'm having a heart attack or not?"  I totally get this.

I have been recently diagnosed with costo.   But almost the same pain happens in my hip area, so the idea of fibro might make more sense.  Crushing pains in the chest sent me to A&E last week, so thank you for mentioning this - I find it reassuring that fibro can present this way.

I didn't realise that pain moved so quickly with fibro - that makes sense to me,  I can be in so much pain, and wake up pain free the next day - or sometimes just a couple of hours later.  

Thanks so much for all your suggestions.  It is reassuring to know that whatever it is, I am not alone.

 

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