First time Post

i am a 47 year old man who developed this illness 9 years ago have fought the inclination to ever go on anything like this before because I really didnt wanna admit anything was wrong and I was weak in anyway .it started with a cold like virus which developed into uncontrolable shaking and constant hangover like feelings which knocked me for six . I ended up being off work for close to 2 years and only because of a number of senior managers who did not want to give up on me managed to keep my job I am very humbled I had these people having my back . I worked as a prison officer and am six foot one and seventeen stone I had a very active life in the prison service and to have to give that up was very hard . Luckily they found a job for me outside of this and to this day I still work there less pay but with the uncontollable shaking I would not have stood a chance with the prisoners . Went to a very good Neurologist who managed to alleviate my symptoms with warfarin and various other medications it has taken many years to steady the ship with symptoms at my worse it used to feel like somebody had grabbed my spine and yank it causing my neck to snap back . I feel like coming on this makes me a bit of a whinger I have a wonderful family who supports me fully my wife is my rock who not only looks after me but also are Autistic son (18 now and is the best thing to ever happen to us) . Problem is I have now started to develop new symptoms dry eyes tingling fingertips etc . Must admit I wanna always go back to the good old days but know they will never happen . I refuse to be a whinger as that is not what I was brought up to be , to certain extent what is sent to try us only makes us harder Al x

5 Replies

  • So you have been diagnosed withHughes/APS? Where are you from? Have you ever been tested for sjogrens disease? Sorry but these are the questions you will be asked so we can try to help you. You said you are on meds, have you checked if any can cause these add'l symptoms?you can type sjogrens in the search box in above right corner to get some info on sjogrens

  • Hi and welcome. Before I go into a long post of advise can you just confirm that you have been diagnosed with Hughes/APS Syndrome as its not quite clear from your post? Once I have that I can suggest a few things you can try to do. Perhaps also you could let me know what other medications you are on and the dose of warfarin. Thanks.

  • Hi, do you have a diagnosis for Hughes Syndrome/APS, let us know the we can help you with more detail. MaryF

  • Ah sorry was given the name of illness as lupus anti coagullant sticky blood on wafarin and paracetomol and live in England . Have the constant hangover feeling but that has become a way of life and am used to it . The spasm like painful jerks in neck and shoulders only come on when I am ill or stressed . Have got an appointment with Drs for fingertips and dry sore eyelids .

  • Hi, yes that is a very old fashioned name for it, where in the UK, as we do have a list of specialists who understand the condition. You may need your medication tweaked a bit, ie a higher INR setting, also a good idea to have your Thyroid, B12, Vitamin D and iron checked also. It is also not unusual to have Sjogrens DIsease alongside this, we do have quite a few guys on here including one of our admnistrators Manofmendip MaryF

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