If you have ever wondered what it feels like to have an unseen disease, I will tell you. I am currently at work right now. I am attempting to type, something I have done for years and years and I am quite good at it. Only now all of the sudden my fingers won’t work well. I spend more time correcting mistakes then I do typing. Some of my fingers are slower and some won’t bend as easily as others meaning I hot the woring buttone and have to somctantly correct myself. (I didn’t sorrect that to show you how bad it is.)
I’m frustrated to the point of tearing up because this isn’t me. I can type very well. I am also tired, not ugh I’m a Mom tired. I am I tried to untuck my shirt from my pants tired and had to rest my arms because it felt like I had been doing pushups all day tired. All I did was untuck my shirt! As I am typing this I can tell you I have this needle poking in my stomach pain that is neverending. It joined me yesterday and will come and go periodically. I also have the bottom rib on my right side that feels like it is separating from my body it hurts constantly and I can’t sit comfy at all. I forget words I know how to spell like separately (thank goodness for spell check). I once forgot how to drive home. I was with my kids and had to google my address and directions.
I woke up last night drenched in sweat. No reason, just a 101 degree fever that is gone in the morning. My left thigh has a spot about the size of my fist that is almost constant nerve pain. Remember when I was walking up the stairs yesterday and stopped to chat? That was because I couldn’t make it up without stopping but I can’t stand people looking at me like I’m sick. So I have learned to hide it.
I have been to so many doctors and hospitals through the years. I’ve had countless tests and each time they tell me “I don’t know”. They always offer me pain pills. I don’t want pain pills I want to be fixed! Sometimes I am so tired all I can do is crawl in bed in defeat. Sometimes I’m too tired to eat. In front of you I will exhaust my last ounce of energy so you can’t tell. I hate how it makes me feel so weak and tired. I used to be a very busy strong person and I feel that slipping away at times.
My toes and fingers will go numb periodically, it doesn’t even bother me anymore it happens so often. I get nauseated periodically especially if I’m not careful what I eat. I’ve lost four children. My first loss at 9 weeks can be explained but the following 2 losses at 5 mths along? My last loss at 13 weeks? Those aren’t coincidences but no one can give me answers.
I have painful nodules in my muscles, I have sporadic nerve pain, I have muscles that feel too short at times, I have numbness in different areas, I have brain fog, memory loss, lack of appetite, insomnia, night sweats, heart palpitations, fatigue, stiffness, unexplained rashes, joint pain, weird eye symptoms… Oh yeah one time the whites of my eyes filled with blood… that is not normal! I get frustrated and snap at my husband because I go from feeling like a hypochondriac lunatic, to wondering what is wrong with me. I constantly feel like it’s in my head until I feel bad enough to know it isn’t. Am I sick or mentally ill? Being undiagnosed is horrible! It’s living with all your symptoms and carefully hiding them so you don’t have to explain to people who ask what’s wrong that you don’t know.
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mclaurinkids
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I know you are waiting for your appointment with a Hughes Syndrome/APS consultant, when you go along make sure as well as the tests for Hughes Syndrome/APS you also get your Iron, B12, D and full thyroid tests done, as sometime it can be a mix of many things, I expect also they will test you for Lupus even just to rule it out. I hope you feel better soon. MaryF
Thank you and I will. Luckily my rheumatologist appt is in three weeks. I left out that my sister, mother and one aunt all have APS, that is why I posted here. My sister also has suspected Lupus and my mother has been diagnosed with Mixed Connective Tissue Disorder. I just hope that my tests will show what's wrong. I'm tired of feeling bad with no way of knowing what is really wrong. I live in the US and have no medical insurance therefore it took quite awhile to save up money for my Appt. (over $500). Thanks for listening to me whine!!
get the most out of your appointment, list your medical history in short bullet points, and also write out your relatives and their conditions in a bullet point list also don't forget any obvious ones going back in time also. MaryF
If you meet an APS-Specialist who understands that you have all the weird symptoms of APS you will feel much better already. A lof of members have zero-negative tests and are diagnosed by symptoms only.
Perhaps he or she will suggest you to do a trial of LMW Heparin and see if your symptoms improve with anticoagulation.
Have someone suggested that you read "Sticky Blood Explained" by Kay Thackray? I do it now!
She has got APS herself and writes about the different symptoms and how it is to live with this illness. It is also good for relatives to understand what we are going through. It is written some years ago and it has not the newest oral drugs but we still have these symptoms. It is a good book about our illness.
If you meet an APS-Specialist who understands that you have all the weird symptoms of APS you will feel much better already. That someone listens and really understand that you are not crazy at all. A lot of members have zero-negative bloodtests and are diagnosed by symptoms only.
He or she may suggest you do a trial of LMW Heparin to see if your symptoms approve with anticoagulation.
Have someone suggested that you read "Sticky Blood Explained" by Kay Thackray? I do that now! Kay has got APS herself and writes about the different symptoms and how it is to live with this illness. It is very good also for relatives to understand what we are going through.
It is written some years ago so you can not find the newest oral drugs in it but we still have all that symptoms today. It is a good book about APS when you are newly diagnosed etc.
another book recommendation -" In the Kingdom of the Sick" describes the gulf between the healthy and those of us with chronic conditions. Those Normals ( Muggles?) only have experience with acute conditions and so, believe that if one wants to be well one simply follows doctor orders. The book helped me pull back from frustrating encounters with some erstwhile friendly "normals" and put their ignorant condescension into perspective. Which has enabled me to know how to communicate with them.
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