Desperate for answers. Lupus, autoimmune diseases.

[Sabbyv20]

Hi my name is Sabrina I am 22 years old. I had my baby in 2017 July 27. After that(and even during) things have been going down hill.. I became depressed, and had alot of anxiety. This is due to the fact that I faced the uncertainty of knowing if my baby had down syndrome or not during my pregnancy. After I had him and found out he did have Downs I guess I became scared and very depressed. It all started when I would have these pains in my chest that lasted the first time, 10 mins, then when I'd be standing or something, it would last like a min. I never went back to the cardiologist because around that time I started to get a blind spot in my eye and (long story short) was diagnosed with uveities in both eyes. (I havent been back to the doc but last time I checked it was going away). So when I found this out I got so much anxiety and pains in my body that I was scared something major was going on. I became sort of a hypochondriac and would be researching all day and night with anxiety. I went to my GP and got some blood work to test for lupus and other autoimmune diseases. Nothing came back. So my doctor says I have fibromyalgia and gave me depression pills. ( Which I never took ). My doctor just prescribes me with new medication (that I don't ever take) when I come to her with problems. I've been in and out of the ER many times since then. (side note: no body believes me when I say something hurts , everyone thinks I just want to die , which is not the case. My family and fiance just think I want to be in the hospital and I'm a hypochondriac (which I admit I am a bit). Why would I want to die though?? My son needs me he has DS). Anyway last year I went to the ER with throwing up (it was just the flu) and they realized my heart was at 120 bpm and not decreasing. They didn't want to release me. I was basically told I might have a thyroid disease. Long story short I was diagnosed with Graves disease and had hyperthyroidism. I've been struggling with these pains and feeling scared to speak up because of the people around me just call me crazy and want to drug me up. Here's what I've been facing since I've had my son:

-joint pain

-back and neck pains

- headaches (recently)

- sometimes I feel like my joints and feet swell (but idk if it's all in my head )

- sharp pains around body

-throbbing

- I have these two bumps on my chest and arms maybe cyst

- breast pain

-chest pain with movement sometimes

- hemroids

-stomach pains when I eat certain food

-stomach ulcer

-when I went to ER I got a CT and the discharge paper work said ulcerative colitis they never told me I had this I barely noticed it on my paper work.

-maybe acid reflux?? Idk

I weigh 250lbs since having my baby i don't know if this has something to do with my weight. I'm trying had to lose weight.

I know I have arthritis I just haven't been diagnosed. These pains come and go.

Please what do you guys think? I know it's a long thing to read but I just want to know that I'm not crazy and that I'm not just a hypochondriac. Thank you for taking time to read and comment.

[whisperit]

Hello Sabrina,

It does sound like you have a lot to cope with at the moment.

As you know, it's impossible for us to diagnose anything over the internet, but in any case, the symptoms you describe are really tricky to pin down. They could be signs of an undiagnosed auto-immune problem, or down to one of the other probelms you've already suggested, like hyperthyroidism, ulcerative colitis, anxiety etc. From what you say, you have no blood signs of systemic auto-immunity, so that may be a reassuring sign - but of course, it doesn't rule it out completely. And there is no excuse for clinicians disbelieving you when you have pain.

It's a bit of a worry that you say you aren't taking the meds that are prescribed.

I guess my thoughts at this stage would be to arrange a double appointment with your GP to go through all your concerns. Tell them that you really need a clear explanation of each of your diagnoses and symptoms (and not a blanket hand-wave like, "It's all part of your anxiety"), that satisfies you. Likewise, you need a clear explanation of how each of these is to be managed. Be honest about what meds you have and have not taken, too!

If I was your doctor, I guess the biggest question I'd have from what you've said so far is whether you are being supported well enough both with your thyroid problem, and - since you mention it specifically - whether you'd benefit from being in touch with a support group for mums with children who have Downs? In the first case, the Thyroid UK site here at Health Unlocked is pretty active and very well informed.

Hope that helps x

[KayHimm in reply to whisperit]

Hi Sabrina,

I agree with what whisperit has said but would like to add that you have pain diagnosed with a neurological pain syndrome condition, fibromyalgia, that is often debilitating. The doctor gave you the antidepressant medication not for depression but for the fibromyalgia. Common neurological drugs are used interchangeably. Many of us take seizure medication and anti-depressants for our neurological issues. Also, Graves’ disease is a serious illness with major systemic symptoms. If you were not diagnosed until you vomiting, that sounds late and you must be feeling very ill. You need to clarified whether you have ulcerative colitis or not. Did they refer you to a GI doctor? You have a lot going on, including the sadness of having a baby with Down’s syndrome. Give your family information about your illnesses, tell them you need support and that it is unacceptable to refer to you as a hypochondriac. All best. K

[Shorthouse]

Gosh savvy they say stress makes a i stuff worse .childbirth triggerd my lupus & a friend of mine the same .you can help yourself a lot eat as healthy as you can sugar has got to go you will lose weight too.(why has my I pad changed you to savvy)maybe being savvy is a good idea x love to you and your baby x

[Shorthouse]

P s if your a hypochondriac so am I (and I know I’m not)

[JimCWalker]

Hey Sabrina,

First off you're not crazy, honestly. Secondly, welcome to the Down Syndrome family!

I have a young man with Down Syndrome who turned 18 in September. Being scared and depressed is perfectly normal in relation to your health and your sons. If at all possible try to make contact with other parents of your people who have Downs it really helps.

If possible see your GP with a list of meds that you are and aren't taking, ask for health and meds review to see if it would be worth starting from scratch.

Also see if you clarify whether you have ulcerative colitis. Ulcerative colitis and Graves are thought to be autoimmune disorders, the colitis can cause painful and swollen joints as well.

It is important that you look at your diet, especially with the ulcer. Get your diet wrong and you can end up in more pain. Stomach pains and reflux may be related to your diet and it irritating the ulcer.

Please consider your mental health. You are under a lot of pressure and there have been some really major changes. Some of what you are describing suggests anxiety to me, which given what you're going through and the uncertainty is understandable.

Please try to avoid googling symptoms, it can make things much worse all round. Be really careful on where you go for information. My starting point is always the NHS or WebMD.

See how you get on and let us know how you're doing. Things will eventually become easier to handle.

[Sabbyv20]

Hi everyone, thank you for your replies. You don't know how much they mean to me! <3 usually people just wave me away, so to hear someone tell me it'll be okay really means a lot and very reassuring.

I guess I'll start by saying I have taking my medication for my graves disease (hyperthyroidism) it's called methimazole. I don't take the depression pills because I'm terrified of taking them. I'm scared to be on these medications. I guess I'll have to go back to my doctor, maybe even find another doctor, and see if I can get things sorted out. Ive put it off thinking she wouldn't listen and just send me off with more pills. I was never diagnosed persay with ulcerative colitis , but my discharge paperwork said I have that, I never brought it up and forgot about it. But I will go back and see if I can see a GI. I've been getting on these diets and nothing sticks. I'll try harder guys. Thank you ☺️ I will get my mental health in order also! ❤️❤️

[KayHimm in reply to Sabbyv20]

You took your first step toward feeling better, and that is asking for support. You are taking your thyroid

medication, which is essential. My mother had Grave’s disease so I know how that can really be rough until it is under control. If you are reluctant to take the anti-depressants, that is fine. Talk to your doctor about your concerns. Many people are fearful of medication. You just have to weigh the pros and cons. One step at a time. And good luck to you! K

[Sabbyv20 in reply to KayHimm]

I did not know graves disease was that bad. Thank you for commenting

[Lisalou19]

When ever I read symptoms started after child birth I can totally relate to this. Something inside me changed and it never returned to normal .

Up until recently I have been around the houses trying to find an answer to my symptoms, only now are my family taking it serious that something is wrong!!!!! I guess they possibly thought it was all in my head and a reason they never offered help! It’s extremely difficult dealing with anything that is invisible to others.

For you it is really important to try and discuss your anxiety , this can cause many problems and your baby needs you to be as well as you can be. I definitely become more anxious after having children, the worry of having to keep another human safe is tough. If your feeling unwell your anxiety could potentially be making you feel worse.

I did some counselling sessions and it was so rewarding. It is always a good thing to talk things through xx

[Sabbyv20 in reply to Lisalou19]

Wow! Yeah exactly the same with me. Yes I need to get this mental health under control thank you ,,xxx

[Ree32]

Hi ,i have been throught the same as you pain wise and same with gps and er department i also have been diagnosed with graves disease .wich is aches n pain wich come and go in different places ..short of breath .hair loss not to mention i cant bear any thing that makes me upset or i shake all over to the point i have to sit down or my legs give way from underneath me.the most part i cant stand the pain and burning or the feeling like im having a heart attack ..chest pain or upper spine pain like someone is severing my spinal cord and the pain runs through to under my left armpit.my joints ache..but wierd thing is my bloods come back as no c-reactive protien ..the thing that tells doctors your in pain and what degree. Which has baffled me cos im pretty high pain tolerent but i know when im in pain and for the doctors to tell u its all in your head fustrates one. They dont tell you how much and many of symptoms graves gives you and how much its scary and the feeling of impending doom that comes and goes ..mood swings also ect. So many to mention.but gps just put it down to not being as crippling as wat it is .im sorry to hear you feel alone ..as i do ..its not fair that not enough gps and endocrinoligists let alone science based research has been neglected in this area.they know how to give pills to bandaid a problem before they even give it a second thought on why its happening and how to cure the problem firstly. Pharmaciticales need there money i suppose

[Sabbyv20 in reply to Ree32]

Yes exactly the same! I feel those pains too. I've learned to ignore them because to me I feel like if I pay mind to them itll only cause me to research and become extremely anxious if I read 'cancer" online or something to where I think I'll die soon. So I just take the pain and roll with it. but all those things I feel I have. Esp that burning pain in my chest that comes and goes. My breast bones hurt to move. I have neck pains all the way to my chest pains with movement. Lately the headaches have been bothering me the most... Hang in there okay. I'll do the same. Thank you for commenting.