PTSD with autoimmune disease in family: I have... - LUPUS UK

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PTSD with autoimmune disease in family

Jjd421 profile image
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I have PTSD and I have for the last year been having really weird symptoms, chronic ear infections treated with antihistamines and antibiotics. It still keeps coming back. It's a build of pressure feeling in my ear that is just obnoxious. I also have heavy periods that last over 7 days. Joint pain, unexplained bruising and red dots that show up. A lot of hand and leg cramping. I drink a lot of water, and a few months ago I got a cbc and it came back normal. I also have had kidney stones since I was 12 that are genetic and not induced by diet. My kidneys seem to always hurt and I have dropped twenty pounds in the last two months. I feel like because I have PTSD my doctors think they are psyochosymatic. I have a child and I feel fatigue all the time and I truly feel something is wrong. I have no clue what to do or how to go about this, please anyone with some type of advice help me out in any way. I am someone who never complains about health but I have this feeling something is wrong.

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Jjd421
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babssara profile image
babssara

Hi, sorry can't offer you much help but can offer support. I'm at the same stage as you, but find from the different forums on Health Unlocked, the advice, information, and support invaluable. I have been "following" same symptoms/treatment people from different sites and read all their historical posts and replies - it is really an inspirational experience and takes away the uncertainty, and fear.

Nothing is too much trouble. HU is the bet thing I've found and wouldn't be without it.

Take care x

Babs

Freckle1000 profile image
Freckle1000

Hi,

Look for some new Doctors ?

I have PSTD and Lupus. Ironically part of the reason I have PSTD is because of many years worth of 'literally' being egnored by Drs when very sick because they seem consistantly distracted by my anxiety state. (I believe the technical term for this is diagnostic overshadowing) ie. discrimination.

I recently had to Dump my long term, and as it turns out very influencial Rhuematologist as he was actually the source of the discrimination - the GPs just followed like sheep.

I really wish I had a good answer for you.

However I do have a strange one.

Recently I've ended up with a GP and specialist who are utterly un-smiling, souless individuals with no interest in emotions or psychology what so ever. I'm also very careful myself to keep my information very impersonal and strait to the point - I don't elaborate & I don't try to make friends with them. I'm still presenting as anxious - but essentially these men 'really' don't care - they just do their job the same way a builder would replace a roof tile.

As heartless and unpleasant as this system is, it actually seems to be working for me 'thus far'.

* Having said this, I would really appreciate some advice on this issue myself.

Sorry, I think I may have gone off on a bit of a tangent.

Good luck.

I know its tricky.

x.

ps. Finding an advocate to go to apointments with you might work?

Jjd421 profile image
Jjd421 in reply to Freckle1000

I can totally give you tons of information on PTSD if you want. My email is Jordandavidson421@gmail.com. And that doesn't sound weird to get a dr who is only set on looking at the scientific aspect, it actually makes a lot of sense. Thanks for responding!

Purpletop profile image
Purpletop

Have you asked your GP to check for autoimmunity? A full blood count doesn't show ANA which is at least an indicator that something autoimmune is going on when coupled with your other symptoms.

If you manage to get that done and that comes up positive, then you've got a good argument for autoimmunity.

The ear issue is suggestive of autoimmunity (maybe not lupus, perhaps something like vasculitis) but I don't want to worry you unnecessarily. I'm not a doctor so it's best you start with a blood test for ANA and take it from there. You might also want to go onto the Vasculitis UK forum, check out symptoms there too.

Don't let them put you in a PTSD box - by that I mean that each time they mention it, ask them to give you the evidence that the particular symptom they put it down to PTSD isn't caused by autoimmunity. If they say that there is no point doing so many tests, ask them why they think so. If the national health service is here to help you, then you want to take full advantage of it.

If all fail, go privately, though that's a lottery too...

Freckle1000 profile image
Freckle1000

Hello Jjd421.

Many thanks for offering to send the PTSD info. I'll probably take you up on that.

And purple top, very much like your assertiveness tip - re PTSD and immunity. Helped me come up with some similar comebacks.

Thanks !

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