Frequent infections

[shreddednips]

Just wondering if anyone has any insight on what's going on with my health. I'm having terrible problems with repeated infections- chest and tonsillitis. I've probably had 4-5 courses of antibiotics this year and keep coming down with colds between bacterial infections.

I've got various other issues too- started slipping discs when I was about 20 and it's been an ongoing problem. I also get injuries very easily and normal things like carrying a heavy bag can leave me with awful joint pain. I quite often get widespread joint pain and just a feeling of incredible exhaustion which lasts for a few days. The joint pain and infections started suddenly after having DS 3 years ago and I've been struggling with it ever since.

I was referred to a rheumatologist who ruled out autoimmune disorders and fibromyalgia. As he said there was nothing wrong I've been trying just to get on with things, but it's getting worse and worse and I'm struggling to work. Thank goodness I'm self employed so I can work very flexibly.

I've booked another appointment with my GP but I'm not sure what they can really do for me as the specialist was stumped. Is it worth being referred back to rheumatology?

The GP needs to do a full panel of bloods including thyroid and any possible vitamin deficiency e.g. B12 and even Iron.

I would be looking into Ehlers Danlos Syndrome

Thank you both for your replies. I had wondered about Ehler Danlos because I'm highly hyper mobile, but I hadn't realised that it could cause immune problems. I'd also assumed I didn't have it because my skin isn't especially stretchy, but I will ask the doctor whether it's a possibility.

They tested my thyroid previously and it came back normal, but I don't think they checked for deficiencies. I'll ask about that too, thank you

Connective tissue disorders can literally affect every part of your body- because connective tissue is everywhere.

The upper respiratory infections could well be caused by reflux which is incredibly common in EDS

Sorry to hear about your health @shreddednips . I've just been diagnosed with hereditary hypermobility but have autoimmune issues too. The rheumy found it around two years after she found the initial problem and my skin is not particularly stretchy. Hypermobility is not uncommon & afaik the least bad thing under the Ehler-Danloss umbrella and there's a severity scale score (Beighton). Can you bend little finger & thumb back, bend and touch the floor with flat hands with legs straight and more tests. As others have suggested get a full blood panel including iron studies, vitamins B12, magnesium, & get GP to refer you back to rheumatology. Oh and around 10 years ago my vitamin D was through the floor so get that checked as that can cause immune problems & bone/joint pain. Good luck 🤞

Thanks so much for your replies, they're really helpful and I'll definitely raise all these points with the doctor. I do have reflux, it's not especially painful but I'm aware of an acid taste in my mouth. I can bend my little finger back to a right angle and touch my wrists with my thumbs, I can't touch the floor but could before the disc problems started. I'll definitely get some vitamin d supplements, that's a very good idea. I'm really determined to get to the bottom of this now because it's interfering with my life so much 😩

They would judge that as positive if you used to be able to flex a joint- and I'll bet it's the reflux causing the infections. It just makes it so much easier to catch things in that area!