Advice Needed PLEASE...what is wrong with me?!

Other conditions
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Hi all,

So I'll try and keep it short....ish..

I suffer from inflammed joints - knees + elbows, but it occurs as 'flare ups' as opposed to me having localised swelling and pain all the time (I was told that I have Hypemobility Syndrome by a podiatrist). I do have a dull pain and general aches constantly though. Specifically, lower back pain that can become extremely painful even if I simply stand for a few minutes to clean my teeth, or shower, etc. I use an Ibuprofen gel from my GP for this, which works great, but I have to take cocodamol and ibuprofen too. The thing is, I have an array of other symptoms, and believe these symptoms, including the inflammed and swollen joints, are manifestations of an underlying illness/ bacterial infection/ virus. I have had had a few blood tests for particular things to rule them out, but I can't seem to pinpoint what is causing my illness. I would love a diagnosis because I feel like I am in limbo.

The other symptoms I mentioned are

- recurrent nasal swelling/scabs/bleeding/soreness, which seems to subside now and then, but never totally goes away. It doesn't respond to antihistamines. It occurs alongside a swollen throat that starts as a scratchy feeling in my throat and gets worse rapidly to the point where it is hard to swallow. I also get feverish and achy. I don't think it is viral because I don't come in to contact with people very often and when I have, they have never caught anything from me. I suffered with tonsillitis constantly as a child and am now allergic to penicillin, so I think it might be strep. I am having a throat swab taken tomorrow.

I have started having lower abdominal/pelvic pain too and have been referred for a pelvic ultrasound. The appointment is taking forever to come, as is a referral to a rheumatologist ('short waiting list' since November 2014?! Ridiculous.). I think that Pelvic Inflammatory Disease is a possibility due to other symptoms in the vaginal area. I had a cervical screening test the other day and it was painful and I bled afterwards, which normally doesn't happen after my smear tests. There is an itchy/inflammed feeling down there, but I don't have any STI/STDs whatsoever and it isn't thrush either, so I am at a loss. I am having a urine sample tested this week.

By the way, I have an unusual bruise-like blotch under my right knee that just developed about 18 months ago. It wasn't caused by a knock or anything of that sort and the pain alongside it feels deeper than just a superficial bruise, say. It aches and twinges and gets worse when my knee swells up.

I am virtually bedridden now because any physical exertion causes my body to just attack me. By 'exertion', I mean practically everything that requires movement - I can't even hoover anymore. 

I realise that I have to wait for the results of my tests, but does anyone have any ideas as to what could be wrong with me? I think these symptoms are all linked by an underlying infection, but obviously could be wrong. Oh, yes, and to top it off, I have a bumpy, spotty rash on my chest, upper abdomin and neck. They are tiny red spots that contain fluid or what looks like little blackheads. I am very hygienic though and this rash started out of the blue about two months ago. It won't go away, but has decreased slightly with my other symptoms lessening, but like I said, it's all recurrent and I can never tell when it will suddenly get worse.

Excuse the length of this! I hope you can shed some light on this for me.

Thanks x

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By the way, if it's relevant - regarding the smear - I have been monitored over the past two years as I had abnormal cells and had LLETZ treatment to remove them in 2013. So, I have had smear tests more frequently than is normal to keep check.

On another note - I had a perforated appendix, later in 2013, and had surgery to remove it.

...Yes, I'm a mess!

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Bobbs, I'm sorry your post is so long, too! It means so much is wrong and it could be from more than one cause...Hugs to you!!

My first thought is Coeliac Disease.  I guess that's because my younger son was a hot mess of symptoms and about 90% improved following his CD diagnosis and complete elimination of gluten (it took 4-6 months for true healing - 4 of those he didn't do much dairy unless he took lactase enzyme with it).  His symptoms included pain, mostly in his joints and head and stomach, major fatigue/lethargy needed far more sleep than average preschool-aged boys with far less physical activity and yes minor activities were exertion to him, nasal stuffyness/runny nose not just at seasonal allergy times, and moodiness/cranky.

You said it yourself in your post - it's like your body is attacking itself. It appears to be something systemic, or system-wide and that makes me think autoimmune.  In my son's case, I finally took him to a pediatric rhematologist and what I really wanted was a cure for his eczema which at that point was unrelenting instead of cycles where he'd sometimes have clear skin (never for long, though) - skin's the largest organ, right?? - I thought we'd get an answer for that.  No such luck, but she did order lots of blood work/tests and sent us to a GI who confirmed CD.  In your case it could be thyroid, rheumatoid arthritis, lupus...but it really seems to be systemic and possibly auto-immune.  Once we were on the right course for my little guy, he was considerably better all except for his skin...which we continue to treat any way we can.  So, I wish you the best of luck as you await your test results and I hope it's something they can pinpoint and treat you for so you can get your life back!!

 

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Hiya Aveline,

Thank you so much for taking the time to advise me

I was tested for coelliac's and it came back negative, but this was a while ago, I am not sure if you can develope it over time?? I totally agree with you that it's systemic and autoimmune in nature, I suspected that too and have been tested for Lupus, but it was negative. It sounds strange, but I always feel disappointed when I get a negative result as I know that I am back at square one, does that make sense? I am feeling very frustrated and stuck at present, unable to move forward.

I will research a bit more along the lines of systemic and autoimmune diseases now though, so thank you again for your advice on my problems, I really appreciate it.

I am really glad you managed to get a diagnosis for your son and he, at least, got some relief from the symptoms!! x

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I just hope that you are able to find a answer. It very bad to have all this and no answer on why. You are in my prayers.

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Hi Bobbs first look at the Beighton scale on NHS direct can you do any of those things? I was Beighton 9/3 now at 68! Don't worry your pains is because your Hypermobile. If your virtually bedridden and you have tummy probs you have Hypermobility Syndrome. Look up that in NHS too! Then go to the Hypermobility syndrome group, there are loads of things about this. Your GP may not know this, mine didn't he does now, he has it too, I diagnosed it! As someone said your tummy probs could be celiac but certainly IBS, it's common with us bendy folk. If you are sore down below you may have thrush, again common, your joint pain may well be because your Hypermobile but I would ask your GP to check for inflammatory markers to rule out other causes. If you have JHS your GP may advise you see a physiotherapist to give you appropriate exercises to strengthen your joints of braces to stabilise them. Try not to worry too much, if I am right then I would join the EDS group for £15 they will send you a very informative book so you can see all the relevant problems. Do inform every health professional including your dentist. Good luck xxx

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Having read your text again if you have inflammatory markers with a raised CRP or ESR, ask for a Anti nuclear Antibody test ANA. If the titre is high please let me know as I may be able to advise you. Try not to worry you must be rather scared, but I am 68 and still going on, there are loads of us bendy folk about, the problem is we have gone under diagnosed for most of our lives, it an historical oversight not your GP or consultants fault they were taught it was nothing to worry about, now the professon has changed its mind! I am Pam from FB British Sjögren's and I'm one of us bendy folk with very Hypermobile feet but not a single podiatrist has noticed so a big plus for yours!!!

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Hi Chrohs  if that's what you mean by CD or Coeliac can both be connected to autoimmune disease. Try not to worry your little boy as he is so young but if his skin doesn't improve there may be a relationship to either. If it's Chrohs mouth ulcers, Coeliac is more likely to give the skin problems you mention. He is so young , I remember feeling poorly at that age, I am sure with the diet he is having he will improve but once a mother always a mother, so you never stop worrying even when they are men and one is a consultant who thinks he didn't get his brain from me, but he is a surgeon with Hypermobility and Psoriasis! So mummy is rather worried especially as his Hypermobility is in his hands!

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Did you find the link in FB?