Any help please? Potential auto immune/arthritis?

[Artdecolover]

Hello 👋

I've had lots of health issues since my early 20s after a glandular fever infection at 18.

I was dx with ME at 23, fibromyalgia at 38 and am currently having lots of pain/odd symptoms. I did put some of it down to being peri menopausal.

I have a phone appointment tomorrow with my Dr to discuss the results of a Thoracic MRI which showed a hemangioma at the T9 vertebrae. I've had blood tests (ok) and a chest x Ray (also ok)

I know I have some arthritic changes in my spine due to an x Ray I had a couple of years ago.

My current issues are:
▪️burning/sunburnt skin feeling on rt side ribs/mid back (no redness, rash etc)
▪️pain/ache in rt armpit
▪️widespread joint pain - in hips, toes, knuckles, neck, back, rt ribs (am using hip/thigh pillow, memory foam neck pillow, have regular massages and Chiropractic treatment)
▪️pain in toes/upper foot/achilles tendons - mainly left foot where I broke my toe 2 years ago - told to go back if it got painful
▪️dry eyes - new condition dx last week. Drops 5/6 times a day

WIBU to request the following referrals:
▪️Fracture clinic for left foot
▪️Private referral to radiology for USS of rt armpit and upper rt quadrant
▪️Private referral to rheumatology

I'm so fed up of being in pain. This can't be normal can it? Sadly any dx of ME/fibro means ime that ANY symptoms are attributed to that.

I know the Dr will probably just say "hemangioma not important" BUT I have symptoms!

Any advice/thoughts?

I feel that fluid is leaking from the area around my eyes.
They're a little sore, and lately very swollen but they look as if they've been burnt with a blow torch.

I describe my Sjorgrens eyes as ‘piss pots in the snow’

Red, sore, sensitive to touch (e.g. rubbing my eyes).

And god forbid I try to wear any eye make up. The skin around my eyes is also dry, sensitive and prone to eczema.

Rubbing my eyes is the very worst thing to do, but I have to sometimes.
Then I know I'm in for a day of it!
I think my eyelashes are now thinning, but can't be sure, cos it's hard to focus enough to look properly.

My eyes water a lot
They feel like I've got grit in them all the time

Sorry to hear you're struggling op. Somebody mentioned it up thread but I have axial spondyloarthritis, i was diagnosed in 2009 after 10 years of pain & investigations. X-rays showed nothing but was eventually diagnosed with blood tests showing inflammatory markers and an MRI scan (my spine & hips had started to fuse). I take anti-tnf medication which works really well for me - I can walk at least! I do have soreness in a lot of other joints though, including wrist pain, plantar fasciitis etc.

I also have the random armpit pain and some soreness in my ribs (a sort of burning sensation I suppose) Only on my left hand side and I've never really thought much about it. It's just added to my list of general things that ache! I also get bad boughts of uveitis (again, only in my left eye) and I blepheritis. It might be something to keep in mind. There is a good website for help and support nass.co.uk

Keep pushing for that referral to rheumatology and an MRI scan if you haven't had one already. I hope you get sorted, I know how frustrating it can be. Good luck! x

Thank you x
I guess I'll see what the new referrals bring!
And the blood tests of course
I think I'm going to push for a private rheumatology referral whatever

The mole referral has come out of nowhere (I have loads of them...)
Must not Google!

Please let us know how that goes, too.
Is there a long wait?

Both 2 week wait appointments

I'll be with you in spirit every step of the way. 👍

💜

Hi OP, I don't have all the same symptoms as you but I do often get the sunburned skin feeling. It's horrible and makes me feel so run down. Nothing seems to help it either, just have to wait it out. I believe it maybe to be to do with stress/low iron/low b12 but I have no real way of knowing this as no Dr has ever known what to say about it. I also have arm pit pain, sometimes 1 side, sometimes both. Glands often up in various places for god knows what reason. Often have a cold feeling all down one side of my head & body, similar to that of a migraine, which I also get.

I have previously been diagnosed with fibromyalgia but I don't think it fits entirely with my symptoms. The Dr seemed like he was just trying to push drugs on me, I refused pregabalin, amitryptaline, duolexetine etc. I'm not in such high levels of pain that I can't function but I do struggle. I have a high rheumatoid factor (reason unknown), joint pain, frequent infections, digestive issues and fatigue. I've also recently had problems with worsening vision in my left eye and I've had hearing loss since I was a child. No one has ever taken the time to look at all of my medical history and put anything together to try and figure out why I am ill so often and why I have so many ridiculous things wrong with me. I got so tired of being fobbed off that I just gave up. I guess I should probably go back but whether or not anything will come of it is another matter.

I'm so sorry to hear that 😔
Sadly not unusual if this thread is anything to go by...
I'm just trying to relax and await my referrals/blood tests

It seems not to be unusual at all unfortunately. So many are struggling to get any kind of diagnosis and not just be palmed off with meds that may or may not work and that have god awful side effects.

I have a gp appointment re the arm put pain as it is worrying me but I might just list everything that's wrong and see what she says!

Pregablin didn't work for me
Which makes me think my pain is not nerve/neuralgia related
If the bloods are OK I'm unsure what else to do

I believe pregabalin is a controlled/restricted substance now or something along those lines, along with gabapentin. I don't think they're allowed to prescribe it willy-nilly like they used to due to it being so addictive.

No idea
I was on 100mg 2 x day
Didn't help with the pain which leads me to think it's not nerve related

So my referrals have arrived
Bloods next Friday, breast clinic on 21st and dermatology on 22nd
Feeling a bit low about it all

Aww, I can understand you feeling low.
Are you nervous they'll find something, or that they won't?
It's incredibly wearing, regardless.

Both I guess!
Added to that we are having lots of work started on the house on Monday
Great timing!

Got my days all mixed up.
Have you started with the appointments yet?
How are you feeling, anyway?

Hi,
The same :(
Blood tests on Friday
Breast clinic next Tuesday, Dermatology on Wednesday

Let's hope some light is shed on what is happening.
It all seems so long winded, which I know can't be helped, but when you're struggling.....

Hi @Artdecolover ☺️ Just stumbled on this thread and I am going through a lot of the same symptoms as you are currently!

My current issues are:

▪️Random aches, especially in legs and back, no reason as not currently able to exercise due to pain worsening after exertion
▪️tingling feet and lower legs
▪️widespread joint pain - in hips, neck, lower and upper back, ribs on both sides, left shoulder and left knee, right ankle and tailbone pain (I am also having regular massages and Chiropractic treatment)
▪️carpal tunnel just diagnosed
▪️dry eyes and blepharitis, diagnosed earlier in the year, drops every 2 hours, micellar wipes and heated eye mask
▪️Abdominal pain, under ribs and breastbone, was told it was excess acid and to take PPI. Been doing this for 2 months now and no improvement
▪️Burning skin, usually on arms or legs

I do have psoriasis and am actually seeing my dermatologist tomorrow for my 6 monthly check so am going to ask to be screened for PSA as unbelievably I have never even been asked if I’ve got any related symptoms! 😱 I’m also going to have a blood test on my hormones as wondering if it could be peri menopause related? Although am not even 40 yet, I started my periods before I was 10 so is a risk I may start menopause early.

Am sick of waking up everyday not knowing what’s going to be worse today! Or if something new is going to appear 😵‍💫

I’ve had my thyroid levels checked (including antibodies), vitamin levels checked, full blood count etc and all ‘normal’. Now awaiting an appointment to see a neurologist and have abdominal ultrasound. Driving me mad, feel like I am never going to feel ‘normal’ again.

I hope you get some answers with your tests soon 💐

@SkinPaperThin

Hi OP, I don't have all the same symptoms as you but I do often get the sunburned skin feeling. It's horrible and makes me feel so run down. Nothing seems to help it either, just have to wait it out. I believe it maybe to be to do with stress/low iron/low b12 but I have no real way of knowing this as no Dr has ever known what to say about it. I also have arm pit pain, sometimes 1 side, sometimes both. Glands often up in various places for god knows what reason. Often have a cold feeling all down one side of my head & body, similar to that of a migraine, which I also get.

I have previously been diagnosed with fibromyalgia but I don't think it fits entirely with my symptoms. The Dr seemed like he was just trying to push drugs on me, I refused pregabalin, amitryptaline, duolexetine etc. I'm not in such high levels of pain that I can't function but I do struggle. I have a high rheumatoid factor (reason unknown), joint pain, frequent infections, digestive issues and fatigue. I've also recently had problems with worsening vision in my left eye and I've had hearing loss since I was a child. No one has ever taken the time to look at all of my medical history and put anything together to try and figure out why I am ill so often and why I have so many ridiculous things wrong with me. I got so tired of being fobbed off that I just gave up. I guess I should probably go back but whether or not anything will come of it is another matter.

I completely understand where you are coming from. I’ve had a plethora of symptoms appearing over the last 18 months, I just cannot believe they are not connected. GP tried to fob me off with all the same meds as you, told me I couldn’t be referred on until I tried them!! I did try amitriptyline under duress but the side effects outweighed the benefits so I stopped it. There was no way I was going to try gabapentin, especially after I’d read the side effects so in order to be referred on I lied and said I’d taken it when I hadn’t and it just didn’t agree with me! 😳 I don’t want to take drugs, I want to find out the root cause of my issues so I can try and correct them! 😫 I’m not even 40 yet but I feel like an old woman 👵 I always have the inflammation markers in my bloods, I’ve always assumed it was my psoriasis but maybe it could be something else. My IBS has been worse lately and I’ve definitely felt more fatigued than usual. I’m so sorry we all seem to be in the same boat 😫💐