Desperate for diagnostic suggestions

[ENesbittsAnkle]

I would be so grateful for any ideas from anyone of what is wrong with me. I feel like death & yet am made to feel like a giant irritating hypochondriac by my gp!

I became ill suddenly almost 3 years ago with a very violent flare up of the type described below. It came at a time of acute stress.

I have asthma & suspected bronchiectasis as background.

Most days now, I have the following symptoms. They’re getting worse and ‘good days’ are few now.

Acute pain in right hip and in groin.
Severe jaw pain- difficulty talking & eating. Difficulty turning head.
Dry mouth.
Vaginal pain - an irritated feeling.
Feeling of irritated ‘thrumming’ skin on legs.
Eyes red irritated & watering.
Catarrh on chest - coughing it up- and in nose.
Palpitations.
Exhaustion.

I have terrifying flare ups as well. These seem to be to be associated with stress. In them, I usually wake in the night with the following:

Really terrible pain in both hips & legs. I am unable to walk- I have to crawl.
Wheezing.
Diarrhoea.
Skin feeling red hot on legs.
Uncontrollable shivering & (despite hot skin!) feeling terribly cold.
Blue feet.
Bad palpitations.
Very dry mouth.
Horrible perineal/vaginal pain.
Bleeding gums.

This lasts about 4-6 hours. It feels like I’m dying. As it recedes my nose starts pouring catarrh & my legs become intensely itchy.

After these flare ups I will be coughing up pink mucus with red streaks in it - ie with blood in it- for a few days and my gums will be bleeding much more than normal. Eyes also very clotted up. I will feel very rough afterwards.

No rheumatoid factor found. No CRP - at least when I’ve been tested. White blood cells ok.

Scanned pretty thoroughly including lungs. No tumours. Nothing on liver kidney etc. some mild osteoarthritis (but not enough to explain symptoms) and inflammation in fluid around right hip seen on scan.

Saw a rheumatologist privately who said it can’t be rheumatoid as a) no obvious swellings on joints and b) no rheumatoid factor or crp. (He said ‘if you had had undiagnosed rheumatoid arthritis for 2 years, you wouldn’t look like you do’. Ha! I look like shit.) Diagnosed fibromyalgia by him instead.

I know people with fibromyalgia & they’re not coughing up bloodstained mucous*.

Oh, and random irritated rashes on lower legs & chest.

I am in despair. My whole life seems to have been overturned. Can anyone suggest anything?

NC for this btw.

*I actually think fibromyalgia is a cop out diagnosis that leaves people - generally women- with life changing conditions suffering because drs can’t be bothered to work out what the real medical issue causing their symptoms is. Fibromyalgia= ‘too difficult for the dr so piss off and suffer quietly’ . Sorry to rant!

Ummm I would have said RA combined with mast cell activation.

I wasn’t actually told I had RA for about 5 years and show no obvious symptoms to an observer. My rheumatoid factor sometimes doesn’t show up but apparently I am still classed as have RA.

Are you unusually flexible? Wondering about EDS or near perimenopause age?

Goodness! I will report repeated posts.

Thank you! (I wondered what the deleted posts were!)

I am 55 and at the moment pretty much immobile! (A very bad patch.) But thinking about it I have had comments in the past on unexpected flexibility. I will look into it !

Mumsnet was glitching whilst posting last night so didn’t dare follow up, hopefully it’s fine now.

Given your age would you consider HRT? I’m 56 and it made a huge difference to random aches and pains and recent insomnia.

Covid exposure triggers my Rheumatoid factor which expresses itself in awful hip pains for weeks.

Dry mouth and eyes usually mean I’m testing on the high side for Sjögren’s syndrome (another fun autoimmune thing)

Your other symptoms sound like post viral Dysautonomia which I think would be worth a google.

It’s not uncommon to have a combination of all these things and does feel absolutely awful.

Mine started 25 years ago triggered by a flu vaccine so I have some experience in controlling/resetting myself.

Perhaps look into a private prescription for LDN (low dose naltrexone) this has been an absolute godsend to me in the past for controlling inflammation and subsequently getting some of my life back.

That is such useful information. Thank you.

I actually think fibromyalgia is a cop out diagnosis that leaves people - generally women- with life changing conditions suffering because drs can’t be bothered to work out what the real medical issue causing their symptoms is. Fibromyalgia= ‘too difficult for the dr so piss off and suffer quietly’ . Sorry to rant!

Totally agree.

I have asthma & suspected bronchiectasis as background.

I also have asthma and bronchiectasis plus RA and Palindromic RA. A lot of what you mention I would put down to the bronchiectasis, particularly the coughing and wheezing..
I get a lot of itching and red eyes. The Palindromic RA causes acute pain in random joints which lasts about 24 hours. If it's a hip I can't walk. It did affect my jaw once. It also leaves no trace when not in flare.
When I first started the rheumatologist diagnosed Palindromic RA 15 years ago but it progressed to RA.

Have you had sputum tested for infection? Coughing up blood stained mucus warrants more investigation. Hate to say it but have they screened you for TB, would omagine it would have shown on one of the scans but it can be missed ( and was for several years in one of my family members).
have they run an autoimmunity panel? ANA?

What did your lung investigations consist of, OP? Many of your symptoms are suggesting sarcoidosis to me, but 90% of sarcoidosis patients have visible hilar lymphadenopathy on chest xrays or CTs, which you don't mention. Or you could be in the 10%. In the absence of lung findings, an abnormally high serum ACE level might be suggestive. Joint, skin and GI symptoms, plus dry eyes/nouth/mucosa, are all very common, as well as fatigue and general malaise during a flare up.

Hi OP, 👋 I'm sure most people who say "menopause" are the bane of your life (and mine! Lol) but a lot of your symptoms, from the bleeding gums to the vaginal pain sound familiar and I'm a decade younger going through perimenopause.

Mine all started about 5 years ago after my youngest daughter was born, and they've decided to stay unfortunately 😔 😂

I don't get any symptoms like the shivering or blue feet, but i was so surprised when a lot of my perimenopause symptoms appeared that I've never even considered to be hormonal ie gingivitis, dry eyes, palpitations, fatigue etc. I'm at my wits' end with a lot of it, to be honest, but I am very sensitive to medication side effects (after I was injured permanently by an off label antipsychotic prescribed for severe insomnia and anxiety after a head injury and it gave me a neurological involuntary movement disorder called tardive dyskinesia).

So I guess i should try HRT but sm terrified to 😐😵‍💫 Do you think that yours might be a bit hormone related? Or do you think it's more autoimmune than that?

Have you had your iron levels checked?

It wouldn’t explain all of the symptoms but fatigue, palpitations, bleeding gums can all be symptoms of low iron. And low iron often comes with both perimenopause and many other conditions (when your body is poorly it often doesn’t absorb as well).

It won’t fix all of the problems but it’s a two minute blood test followed by supplements if it’s low. So a very easy fix to try.