Sticky Blood-Hughes Syndrome Support
8,336 members8,512 posts

Fear of the unknown

Good evening all, firstly thank you to everyone being so kind to me yesterday and addressing some of my concerns. Unfortunately I have kinda worked myself into a right state today. The brain fog has been so overwhelming for five days and I feel like my brain is full of syrup. Its really frightening me as I'm worried this signifies the beginning of a catastrophic event. I have six long weeks to wait for my repeat tests and in the mean time I have been told to 'hang in there' by my Dr. I am not to start any aspirin till my condition is confirmed. For yrs I have been told it was ME, fibro and an overactive imagination due to Health Anxiety, it's a catch 22 now as I have developed severe disabling anxiety which has kept me housebound due to feeling so unwell and thinking I have imagined it all. As I explained previously, thankfully blood tests( severe vitamin d, chronic anaemia and positive LA) showed a problem, they said possible Aps and or Lupus, and I am after 10 yrs finally being taken seriously. Both my immunoglobulin tests were raised but serum electrophesis was normal and I have no idea what that means? Dr says probably means nothing significant??? I am so worried it's too late and I am gonna drop dead before I get any treatment and I cannot cope with this. I am beyond afraid to the point I am shutting down and withdrawing from everyone. I just feel it's too late and I cannot shake the just knowing! I feel self centered and completely obsessed and self absorbed! I don't know what to do. Has anyone else felt this way? How do you move on from the fear of the unknown? Every time I feel a twinge in my chest I'm completely freaking out about a blood clot and the brain fog is

horrendous I keep thinking a stroke is imminent. I only got married last yr to an amazing kind man after 9yrs of marriage to a very abusive man. I fear as I have found peace in one area of my life everything will be taken away in an instant due to my health. I could really use some friendly advice as I don't know where to turn right now. I am so sorry to be so needy right now but if anyone can relate I would like to hear from you. Thanks x

9 Replies

bobbywgirl3, I know that feeling of being completely out of control of a situation. It is really frightening and I have been there. I have been blessed with a faith that no matter what life throws at me, Jesus Christ will be there with me. The bible says that there is a time to give and a time to receive. This is your time to receive and someone else's time to give. Don't close yourself off from others. Sometimes other people don't say the words that we want to hear, but that doesn't mean they don't care. They are just trying to help us calm down. Don't assume they are just trying to brush you off. Try praying for the people on this site, and I will be praying peace for you. The waiting is terrible, but we are not the only ones dealing with it. We are in this together!


Its so hard not to be anxious when we don't know what is going on.

The vitamin deficiencies can cause anxiety too so hopefully when you get on top of that you will be able to feel more in control. Its not always just in the head ...vitamin and hormone inbalances can really affect how we feel.

I'm not sure if it was coincidence or not but I found that when I started taking folate and iron for my folate and iron deficiencies I felt a whole lot brighter and less anxious. I also think that going gluten free helped too. So many things can affect how we feel.

The chest pains worry me every time too so you are not alone on that.

Hopefully you will get the help you need to feel better soon.


Hallo there,

If I were you I would take long walks and get some fresh air. We all of us feel better when we exercise. The blood will move better also. I always take walks as that makes my body feel a lot better. I can think better afterwards and sleep much better. That is my suggestion.

Kerstin in Stockholm


I agree with Kerstin. Get outside and breathe the air that is around you. Fluid intake is gigantic as well as right eating habits. Clean eating and fluid fluid fluid.


I agree- exercise is huge for me and I've started meditating for 10 minutes a day. I take long walks every day and participate in exercise classes at. Gym. I told my rheumatologist I was anxious and she wisely said I've been through a lot and should not take meds for anxiety but seek to find activities that make me happy which I tried to do. I also try to remember that I'm not in charge and try to turn my anxiety over in daily prayers and remain in gratitude for my good medical care and health. I t t y to remember that stress makes brain fog and tiredness worse. Support groups help too. Be well.


Being with someone when you exercise can help with the first-diagnosed anxiety. When I was first diagnosed I took daily long walks with a friend. or I swam at the local indoor pool after telling the life guard to watch me closely. Is there a group exercise class in your area? Getting out, moving and spending some social time will help your circulation and being with people might help you " pass the ball" on symptom checks: if you develop something sudden and alarming -- they are going to notice.

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Boy, can I relate to your post. I am home too, but find every little pain I get freaks me out. Days when I can't breathe too well, panic attacks, foggy brain, pain in my back, headaches, heart palpitations. All this makes me a little nutty....I have been exercising to alleviate some of my day of worrying. It helps a lot. I agree with what others have written....try to take a walk...with a friend is better....and yes, I come to prayer too...some things are too big for me, and I pray that God is by my side. I saw a picture once of an angel holding a man in its arms. I keep that image in my head when I get scared. Hope this helps..


Please hang on in there and do move about and get yourself outside and call in favours from friends, life is going to get better for you, sooner rather than later. MaryF


You are on the right track and things are moving forward positively. You are further up the road in a shorter amount of time than 75% of the people who are members on this Forum who blithely went through life being missed diagnosed or ignored for years! At least you have a Doctor whose on the right track.

So as the others have said, keep busy, get outside if its a nice day, feel the sun on your face and take a walk with your wonderful new hubby and think of him when the negative thoughts try to intrude. Nothing nasty is going to happen and you will be ok. x


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