Sticky Blood-Hughes Syndrome Support
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Memory loss and a feeling of "can't cope" with work

For the past 2 years every time I've been to see the specialist or my GP, I've mentioned that I keep forgetting things I've always remembered. They just shrug it off - but I'm really concerned.

I used to have a responsible complex job but over the last few years, I've changed for something less involved. I'm currently coming to the end of a 1-yr contract and looking at other job adverts and I have a real scary feeling in the pit of my stomach. Everthing looks to hard and I feel that I can't cope with things on the job spec.

I used to be so tuff and now I'm weepy and panicky.

I have SLE, APS, hyperthyroidism and Menieres. However, I've had them since I was 20. I'm now 44 and so I've had a good run as I don't suffer from alot of things I read about that others get.

How do I make the doctors take me seriously or am I just whining and being a drama queen?

23 Replies

Hi Nat: I'm so sorry, as I know the feeling you are talking about. Guilt. Guilt that you are not donating the same salary to the family; just all sorts of guilt of every kind. Make an appointment with your GP telling him these symptoms have now gotten so severe that you no longer feel you can do a competent complicated job. You would like his help in convincing your company in finding a position that you can do. Try it, no matter what it is. If you find that even that is too much - let the doctor know, as hard as it is for you to face you do not feel you can give a fair job for a fair wage and your ethics simply won't let you continue. All of the diseases you mention have symptoms and tired fits in all of them. Also, when I had trouble coping I sought a doctor for that too. It was undoubtedly the most helpful. Worked good and hard on guilt and finally rid my self of it and used that energy for improvement and education instead. I am fully disabled now for the past 12 years. Every once in a while the guilts (all of them) hit me and get me to a depressed state. The difference is, now I have weapons against them. I have learned ways to concentrate on the positive and leave the negative on the other side of my front door. If I can't find a lot of positive to concentrate on I know it's time to create some~ and I do what I can no matter how small.

Listen to your body. Consider going part time to a less complicated position. I hope these suggestions help. It's a major lifestyle change... for the better.

Warm wishes,



This was an excellent reply.

Nat you are not being a drama queen at all.

i was looking at job ads this morning as I feel guilty for not bringing much money in to the house but just the job descriptions made me feel tired - just thinking about it :)

Canary offers some good ideas.

Be kind to yourself - you have some horrible stuff going on.



That's exactly it, Stillwiting. If people were half as kind to themselves as they are to perfect strangers we would all be better for it. Not any easy feat, I know. Especially considering all our lives most of us have had someone saying "you can do better" somewhere in the background. That little whisper travels through one's life with them, consciously or unconsciously. We are intelligent beings in charge of our thoughts and actions as adults and fully capable of our thought control. Truly, we are strangers to ourselves. It is a psychiatrist's job to help us know and treat ourselves better. Worked for me.

Warm wishes,



You have really helped me today - thanks :) I am riddled with guilt - yet I can be so kind to others yet I can not forgive myself :) I am going to try to take my own advice and be kind to myself.




I agree with the above. I still have my job but seen as I haven't worked a day their since January and I had a long period before that Sept 2012 to January 2013. I managed to return for two week in January before becoming really ill. I use to have the terrible guilt about letting my family down, friends down, Colleagues. I didn't feel I was attractive anymore. I felt like a broken record to friends and families. I have some complex issues and I'm still under investigations . I keep thinking there will be a miracle cure or diagnoses. I have a lot of gynea issues going on after a hysterectomy last year. I was diagnosed with APS this May after a blood clot killed off a few arteries in my hand. I have had problems with my mobility and they are now suspecting MS. I've always given it my all to my job and being a teacher I think I spent more time with other peoples children and tied to the job I don't think I had time for my own children and family. I has made me realise that things happen for a reasons. We are struggling financially and my family are upset about my continuous health issues. Seeing how I was to being crippled and some days not being able to walk or remember words easily. I must admit I still feel the guilt now . I think that apart of being someone who does care its battle. I've come to the conclusion at this moment I wont be returning to teaching any time soon. But I have a positive idea that one day I will get right meds to help me in the future and then I can have a dabble in supply teaching 1 day a week. But for now and the forceable future this is a journey I need follow. You need to think what's right for you and your family. Financially it might not work but you will adjust and it will be tight . Something will come up. Maybe part time is the way forward?

Hope things work out.

Andrea xxx


Hi, I do feel for you as I had to give my job up just as was becoming supervisor :(

I couldn't concentrate, memory was terrible, joints so painful, was lethargic all the while, got so stressed, fed up & frustrated with I know how you are feeling.

That was 12 years ago now, I'm trying to make a go out of working for myself as a photographer to work around this damned illness!

Recently with the government stopping my DLA I have been considering going back to work as I cant pay my bills! but I know this will have a huge bad effect on my am just hoping for a light at the end of the tunnel at the moment?!!

You need to see a specialist that will sympathise what you are going through, listen & understand......this is very serious & you are no way a drama queen...or that would make us all drama queens!!! & I certainly are not one of them! I've always done everything for myself, paid my own way, stood on my own two feet since I was it gets to the strongest of us......but we are a strong breed & WILL get through what it tries to throw at us....ok?!!

Hugs to you. keep strong & positive xx


Hi You are a photographer. May I ask if you have taken the photo of the woman with black wings and talking of beeing strong?

I am interested in photos because my great interest in life was painting oil and aquarelle before I had neurological difficulties with my eyes.

I think it is a great photo with that text also! Hope you can soon have time to continue

I wish you will soon have time to be nice to yourself as I understand that you have a tuff time at the moment. It is so difficult to express feelings in English but I wish you everything good in the near future .

Kerstin in Stockholm


Hi, no that's not one of mine, but feel free to look at my website :-)

I take many variations of photos & love it, also art, but my hand cramps up very bad so it limits me at times :-(

Thank you for your kind words x


I can imagine! When my eyetrouble was gone after warfarin my hands started to cramp. It is difficult to write and hold the pencil.

You stick to your photos. It is a way of painting. You learn to see forms and colours and I think it is good for our brains in many ways.

I will look at your website. Kerstin


Thanks for all your supportive and caring replies. I am currently working part time and I'm hoping to find something part time again ... however, I'll need to take what I can find and what comes up ... even if it's full time. I live alone so I can't afford to be out of work. I've also been off sick a few times this year and of course, don't get paid for sickness. It's such a catch 22. I wish they still had DLA and I could get some financial support - it would help immensely. I WANT to work ... I just need to find something less pressurised. I used to have excellent attendance as well, but now - not so much.

Just been looking over another job description and they want enthusiastic, driven candidates, someone who can travel when required and good verbal skills. God, his used to be me and now I have trouble remembering and struggle when trying to speak searching for the right words. I must sound drunk/slurry sometimes.

I'm going to try to be kind and forgiving to myself. You are right ... if I was offering another friend or colleague advise I would be much kinder to them.

Thanks again for your kind words x


Just a thought - but does anyone know of any medication that can help with memory issues?

I currently take daily; prednisolone (5mg), hydroxychoriquine (200mg), thyroxine (125mg), citalopram (20mg), Asprin (75mg), calcium (500) and of course pain-killers. I've recently been on folic acid too.


I have heard of Ritalin for memory. I have never tried it myself. Also brain exercises as in brain-games; puzzles, cross-words, Rubix Cube type games. Perfection is an excellent brain stretcher! And when you master that, Superfection is expensive ($50) but well worth the extra effort. Quite fun. Can be played solitaire or with with others. Get yourself an Erector Set and begin to build things on the dining room table. You actually stretch other neurons in your brain. You get faster, better, and more creative. It works. You feel more alert after playing. My neurologist started me on brain-games after my stroke and it works for me. Talk to your GP about which he would recommend for memory. There are many word-finding games and others free on the web.

Good luck, have fun while getting better!

Warm Wishes,



Hi Nat

You may need better anticoagulation than Aspirin alone; Warfarin or Heparin. My memory problems were eased a lot by Warfarin and even more now I have changed to Fragmin (Heparin). Who is managing your APS treatment?



Dr Lövey at Halton and Warrington Hospitals in Cheshire, England.


Than you Nat

I think you should discuss with him whether you should have better anticoagulation, as this helps many APS patients with memory problems.

If you are not happy with what your consultant says you could have a look at the list of experience APS consultants on the HSF website; click on the logo at the top right of this page.

Best wishes.



I agree with the above but recognise that when you live on your own, the pressure on you is enormous to keep going and earn more money.

I have struggled too with getting health professionals to acknowledge the memory loss issues with APS so no, you're not whining. The frustration of trying to explain the impact and reality of this problem at our age is huge. People say "oh I get that all the time" and i want to scream because it truly is a different sort of memory loss. Don't get me started on the word finding issues either! ;)

Good luck with the job hunting and be kind to yourself!


MY memory and wordfinding has improved on higher anti coagulation . I would ask for a referral to a specialist who understands these issues. Perhaps print off some of Professor Hughes case histories which cover memory and concentration issues.


Dear friend, when I was reading your post It seemed like it had been written by myself!!

I do have a responsible and stressful job like you and I am very worried about my memory problems. Doctors didn´t believe me despite of complainning about it everytime. They said it was a mental problem so I visited a psychiatrist and she diagnosed that I hadn´t any problem. After that, I shew that medical report to my Neurologyst and told him:

"It says that I have no mental problem, and my memory loss and lack of concentration is real and is causing me problems at work. I want somebody to test me (cognitive tests). I want to change my job because I am an intensive care nurse and somebody could die because of it"

The neurologist wrote a report about my memory problems, it was the first time in 3 years. Tests weren´t necesary!!


The neurologists are not good at APS. She could not understand that I had miniclots but now every doctor (I hope) have realized that my neurological problems and TIAs and memorytroubles are due to APS. Much better on warfarin. Are you on warfarin and selftest (Picture)? I have had tests and they believe me. I feel for you. What can I do? Nothing here from Sweden I guess but I wish I could.

Do not loose your believing in yourself !.

Kerstin in Stockholm


Your are not a dramaqueen! Read what I wrote to Swirl. That is ment for you as well..

Never loose your believing in yourself! Good luck in the future!!

Kerstin in Stockholm


Ive had to give up my chosen profession and for a long while, I thought I would never work again. I took medical retirement and settled in to doing voluntary work. This is a great way of building up confidence and it can also lead into part time paid work if you choose wisely.

This year I started doing Consultancy work. This gave me the opportunity to work at my own speed and on my terms. It means I can work from home (in bed on my computer if need be) and only go into the office when I have to. I have to be very organised and make lots of lists and write everything down. I also have to be very honest with myself about what I can and can't cope with.

I realise this is not possible for some but I mention it to point out that changing direction, even when you are over 60 is still possible. You can balance your life to combine this horrible illness and still retain some self respect without getting too stressed.

I hope more of you manage to do the same. :-)


I used to work half time secretary, office work in small organisation. But I could't handle it at all. Memory and concentration was so poor. Also fatique is horrible sometimes. Luckily I was transfered to another kind of work, where I work with people. In that time I didn't know what was wrong with me. The diagnose was CFS/ME, which was not correct diagnosis. Another 40 % work I had to give up this last month. Now I work only 40 % and it is more than enough work for me at the moment. Correct diagnosis (this year) and medication (anticoagulation, hydroksiklorin, cortisone) has helped a lot. I have high expectations from warfarin treatment, which I started only a week ago.

This forum is great! I hope you find a way to manage! Take care!


Have your vitamin d checked. Don't accept any no's or that's not a symptom. Trust me. I asked for 3 years and was brushed off by my GP. Finally to shut me up he did it. Boy was he surprised to find out how low I really was. I am now doing much much better. Mind you he gave me about 15 other dangerous drugs thinking it was something else. I refused too take them. Listen to your body, You know it better than any one else.


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