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Combination of fatigue/ Gastrointestinal/ musculoskeletal symptoms

9 replies

uncomfortablydumb60 · 27/04/2025 15:20

I’m posting on behalf of my DS1 best friend who is really struggling with above symptoms.
she is 30 and was diagnosed with ME at 16, but above have appeared over the last couple of years.
Yesterday a red blotchy rash appeared all over her body which is sore.
She has had colonoscopy as suggestive of Crohns but that was negative
Her DM is TI diabetic and has RA
Her GP is out of ideas now, which is ridiculous imo
im wondering whether Ehlers Danlos:hyper mobility may fit as she is also hyper mobile
She’s such a lovely girl and I feel sad for her
Any ideas much appreciated

OP posts:
SnowFrogJelly · 27/04/2025 23:24

Not being funny but this person isn’t even related to you and should see a doctor with these symptoms not get a diagnosis from MN

Lemsipper · 27/04/2025 23:28

SnowFrogJelly · 27/04/2025 23:24

Not being funny but this person isn’t even related to you and should see a doctor with these symptoms not get a diagnosis from MN

Seemingly she has and the doctor is all out of ideas.

Ohnohelphelpehlp · 27/04/2025 23:29

I realised after a lot of trial and error that vegetable oils made me ill. Mainly rapeseed and sunflower, palm oil doesn't seem as bad. After reducing/cutting out as much as possible (they're in nearly everything) I had a drastic improvement in allergy and joint symptoms as well as less fatigue. I do think it's something people should try - I was diagnosed by a specialist as having eds so it was all those type of symptoms. It got to the point I couldn't eat anything without feeling really really ill to the point of vomiting at times.

Switching to real butter (rather than spreadable/Marge) cooking with animal fats and olive oil and not having normal bread have really made a difference for me. So not an expert, but would suggest trying it.

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uncomfortablydumb60 · 28/04/2025 00:01

Thank you all very much for your thoughts, I’ve sent her this thread.
@SnowFrogJellyNot being funny but if you’d read my post properly you’d know that she has had various investigations which have all been negative
I have posted out of deep concern for a woman who means a lot to me.

OP posts:
FrazzledHippy · 28/04/2025 00:03

Fibromyalgia as well as ME?

SnowFrogJelly · 28/04/2025 00:43

uncomfortablydumb60 · 28/04/2025 00:01

Thank you all very much for your thoughts, I’ve sent her this thread.
@SnowFrogJellyNot being funny but if you’d read my post properly you’d know that she has had various investigations which have all been negative
I have posted out of deep concern for a woman who means a lot to me.

I did read your post properly I just don’t see the point of asking for medical help from unqualified people on the internet

Wearealldoingourbest · 28/04/2025 01:31

I'm assuming she's been tested for coeliac disease as well? If not it sounds a lot like CD with dermatitis herpetiformis (gluten induced autoimmune rash) as the main symptom. With that medical history she should also be tested for psoriatic arthritis, lupus, pernicious anaemia (autoimmune B12 absorbtion disorder) and Sjorgen's syndrome as a starting point. I'm not a doctor, so this is not medical advice, but I do (sadly) have some experience with autoimmune conditions. I hope she figures it out.

YouBelongWithMe · 28/04/2025 01:33

I was also going to suggest coeliac disease

Yoonimum · 28/04/2025 01:44

Those sound like very typical problems as part of ME, tbh. Transient problems like rashes can be due to the up-regulation of the immune system in ME. Has she ever been referred to a specialist, chronic fatigue service? They can be helpful. However, I'm aware a lot of people have to work out their own triggers and management of them.

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