Scared and lonely

Hi everyone,

Been very unwell for many years and as I suffer with severe anxiety due to my health problems doctors have been quick to palm me off. I have since developed a severe firm of health anxiety as nobody could figure out what was wrong and I felt like I have been going insane. I badger my gp so much he finally agreed to refer me to rhemy. He was sure it was nothing would run done tests and was adamant it was just to reassure my anxious mind, didn't expect anything, blah blah. Only thing is results came back and they believe I have APS and maybe Lupus!! I am shocked as I have been convinced I'm dying and slowly going insane and now I fear my greatest fear has come true. I am absolutely petrified. It now seemed so much easier just thinking I was crazy. Now it's all too real and every headache, every tight chest and ache has me thinking this is it. They said they need to run the tests again in 6 weeks and until then no treatment until they are 100% sure but the wait is awful. I feel I have a time bomb inside me and my days are numbered. Cannot eat, sleep concentrate. My brain for getting is awful, constant migraines, had my 9th miscarriage in Oct and I am so exhausted I'm sure I'm dying. Could really use some advice to get through this waiting period and to put my mind at rest. Such bad migraines worried I will have a stroke. Also having horrendous palpitations and tachycardia. Recently told I have an arrythmia but not to worry!! I am anaemic, have severely let with vitamin d and lupus anticoagulant is positive. Any ideas?

Thanks in advance for any advice and Thanks of reassurance

14 Replies

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  • First of all let me give you a big (((HUG)))). I totally understand the health anxiety as I went through it some years ago. I was certain I was dying. No form of anxiety is good and only make you feel worse. I am glad they eventually listened and now have something to go off and soon you will be treated. I am so sorry for all the miscarriages you have had to go through. Try to eat and sleep as you need to, as speaking from experience not doing either will make you more ill. I know it's hard but please try.

    Worry and anaemia will cause palpitations and make you feel your heart is going to give out when it won't. In 6 weeks you will fully know if you do have Lupus and APS and if you do then you will get treated. It will seem like an eternity but please don't worry. I speak from the heart knowing what worry did to me and my health.

    Someone who knows more will be able to assure you but I had to respond as I know only too well about health anxiety and feeling like you are going to expire any minute. You won't. Help is on it's way. Good luck.

    Dee

  • Where are you located? Can you get yourself to see Professor Khamashta at the London Lupus Centre? No wonder you have severe health anxiety! Are you taking any medication at the moment? When you had your recent blood tests done, did they do a D Dimer, do you know? I am not a doctor, and if you are able to, I strongly recommend that you do make an appointment with Prof Khamashta - you may not need to wait 6 weeks for the inevitable diagnosis if you can see him as, based on your test results and symptoms, he may be able to diagnose you. Sometimes a simple aspirin each day is enough to lift the symptoms of APS and I wonder if it is worth you taking this for the time being until you get your firm diagnosis, whether you see Prof Khamashta or not? Once you do get your diagnosis (and well done for persisting!!) you can be treated and hopefully then your symptoms will greatly improve and your anxiety will lessen and you can get back to living a normal life!!! My thoughts go out to you. I am sorry you have had to go through so much for so long and yet have only just begun to get some answers. X

  • Hi and a big welcome to you, I am so sorry you have had such a difficult path to diagnosis, please join the club, you are not alone with this. There is now real light at the end of the tunnel for you. As your GP/consultant is in a round of testing with you, along side your Lupus and Hughes/APS, and lots of us have both plus other conditions, make sure they look in detail at your Thyroid and also to make sure your levels of Vitamin B, D and Iron are optimum, this is vital to give you the best chance at better health. Many of our members find Plaquenil as in using that actual brand rather than the generic very useful for the fatigue, but it is not a quick fix, results come about over months rather than days. Please let us know how you get on, and also please also familiarize yourself with the charity website, and the list of recommended specialists. Where are you located by the way?

    I am sorry you have had such an awful situation with multiple miscarriages, many on this forum will relate to this having experienced similar, my own sister had 7! Hopefully with diagnosis your situation will now become more clear and also over time greatly improve.

    hughes-syndrome.org/

    hughes-syndrome.org/self-he...

    All the best to you, please use this lovely and supportive forum to help with your situation. MaryF

  • Thanks everyone for responding so quickly. Firstly I am in County Durham, I have been told I cannot start aspirin or any other anticoagulants until my next set of tests in May so as not to cause a problem with the tests. I have severely low vitamin D and chronic anaemia for 18 months despite increasing iron. Gp has also asked hematologist to look at why I am not absorbing iron? I turned 42 Friday and my biggest concern is will I suddenly just stroke out or get a PE and not wake up while waiting for my other tests. Recent D dimer was very low and Dr was not concerned, I have swollen superficial veins, was phlebitis apparently. Always short of breath probably due to anaemia but now I have fixated on is it due to clots. Its awful to have this train of thought. How do others cope on here, any advice? I am bipolar( unmedicated and stable two yrs) with severe anxiety so this is really not helping my state of mind. I'm so very grateful for everyone replying so quickly. It really helps to not be alone in this x

  • Please remember that if it normal to supplement with B12 alongside Iron as well as the Vitamin D, I hope you improve. We hope Your GP/Consultant will look into this. Also please bear in mind that people who have Hughes Syndrome/APS also often have Thyroid problems and the TSH test is NOT reliable, untreated Thyroid problems can also lead to mental health problems which present as Bipolar and other, due to possible untreated Thyroid issues, not saying it is this, but you MUST not leave this not investigated. Please join TUK if any of this sounds possible, as they are our forum of choice on such issues. MaryF

  • Thank you, I'm not sure if there is a specific value thyroid should be ideally but my gp says it's within range. Not sure what it should be. My youngest has type 1 diabetes and hypothyroidism and severe migraines since he was 4 and the only member of my family ever to have autoimmune problems besides myself. I was told I had ME when pregnant with him but it seemed like a' we don't know what's wrong with you diagnosis.'

  • Please join TUK, who realize as the NHS's forum of choice that the standard TSH testing is NOT reliable and there is campaigning due to this, patient symptoms and also history is often sidelined, MaryF

  • Hi and welcome.

    My colleague, Mary, has given you some good advice, as have others on here. You are no longer alone, you have new friends here, who understand APS/Hughes, as we all have it.

    Although we are not medical professionals on here and cannot give you advice on what medications to take I would just say that many people, those who have APS and those who don't, take 75mg Aspirin as a daily precaution against many of life's nasty surprises, which may befall us as we all get older.

    Good luck and keep in touch with us.

    Best wishes.

    Dave

  • One of the things that helped me the most during my most anxious times (I have had health anxiety and have been seeing a therapist) was meditation. When you breathe long, deep, slow breaths your whole body relaxes and it really can help with the anxiety. I think at the moment, the anxiety is what you should try to focus on if you cannot do anything about the APS/Lupus for 6 weeks. I have now done the 21 day Deepak Chopra "Perfect Health" meditations over and over again, and this is the best therapy for me. It helped calm me down and think logically about things. I realise it isn't for everyone though it has helped me more than seeing a therapist. The other thing is practising mindfulness - the theory being that if you are fully aware/concentrating on what you are doing, your mind cannot be wondering off in other directions.

    The fact that your D Dimer was very low is great - so it is incredibly unlikely that you have active clots at the moment. The other thing is that you have suffered with these symptoms for what sounds like a number of years, if I am not mistaken? So whilst it is possible for any human to have clotting events at any time, the good thing is that despite a delayed diagnosis, you are still very much alive and have therefore every likelihood of getting through the next 6 weeks, onto the right treatment plan and then living a long and healthy life!

    You seem to talk about yourself and your anxious feelings quite negatively and I just want to say - don't be so hard on yourself! It is entirely understandable that you are feeling the way you do - I can't imagine anyone being able to carry on as normal if they'd suffered in the ways that you seem to have and you deserve compassion.

  • Thank you so much merrohawk, I am not very good at living in the moment and spend most of my days in what if? Such an awful waste of my life, I have so much to be thankful for yet I have spent 10yrs battling what seemed like an imaginary illness to all but myself. I honestly thought I was going crazy. I wondered how my mind was so powerful it had manifested symptoms and Dr's were so sure it was all down to my anxiety the symptoms didn't ease off. I had to get proactive and rather demanding this last yr as I was becoming so unwell. I thought I'd be admitted into a psych ward as I couldn't understand how I could be responsible for making myself ill. My Dr agreed to refer me as he basically wanted to quiet me lol. I was truly becoming neurotic. Also to be honest I knew I was developing a severe health anxiety but I just felt something was amiss. Blood tests apparently cannot be psychosomatic, Thank God! I would live to be more mindful and would love some reading material suggestions . I have completed 5 courses of cut but failed miserably. Yoga and pilates exhausted me so much I felt awful. Been stuck in an awful loop of fear it's hard to even think straight. I thank everyone for being so kind and giving me advice and compassion. X

  • Life will now improve, diagnosis is half the battle and support is good on here, best wishes to you. MaryF

  • Thanks Mary!

  • The road to diagnosis is always a difficult one. But while my road was full of gravel and downed trees, it sounds as though you were road was full of boulders and landmines. I, responding to the belief that my issues were psychosomatic, was calling my issues "panic attacks." The MRIs I finally had showed these were actually mini strokes. Not transient ischemic attacks, but full blown ischemic strokes, with white matter damage up there on the screen for all to see.

    I felt betrayed by the medical providers I had trusted. But it is a difficult diagnosis and a poorly understood malady. Give yourself and your doctors some grace.

    On the other hand – sometime after I was finally diagnosed and put on warfarin, A close friend accused me of being "obsessed," with my illness. The thing is though, many autoimmune disease is are so poorly understood that obsessing about our illness is how we stay well. Trust yourself. And know that many of us on this site have traveled similar roads and were here to share and support.

  • Another hug from me. I have lost 7 of eight babies and even though I had anticardiolipin antibodies such was the era in the eighties that APS was not diagnosed or treated until I had a heart attack last October. Firstly, try, as hard as it maybe to get some relaxation and calmness into your world. Now you have been diagnosed treatment should prevent the more dangerous effects. No wonder you thought you were going mad. I also had so many "small" symptoms all apparently unrelated it is almost a relief to know that I am not mad. However, I agree it takes a lot of effort not to feel panic and fear. I am not quite there yet! Another hug x

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