Quick question..........does anyone with hughes here have, and always had underlying depression?
depression: Quick question... - Hughes Syndrome A...
depression
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Andrewl
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34 Replies
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Hi Andrew
Yes I do but that may be due to work stress from clients and family problems too, so it may not be APS related.
Dave
Thanks, Dave. I appreciate your input, and honesty. Its a hard thing to work with and talk about. I hope your problems are solveable and as I can relate to the depression, I am always here to listen. Much appreciated.
Andrew
Yes but not sure how much related to Hughes. Don't suffer so much now as had psychotherapy a few years ago which made an unbelievable difference. It's a crazy world when I was quite happy to tell people if I needed surgery but not that I was suffering from depression.
What I find now is that I have to stop and think whether I am sinking a bit or whether it is down to intense fatigue or not feeling well. But I am sure the two are interlinked as exhaustion and feeling unwell can make you feel very low.
Going gluten free resolved much of my depression but I also feel myself slipping if my INR is too low.
Yes, and yes. It is up and down, but we have to grieve for the person we will no longer be. Also, not being able to do what we want to do can have a a depressing effect I have found. And the ongoing battles wear one out.
I have been greatly helped by the Psychology team at Guys. If you are a haematology patient they have their own team to whom you can be referred. I have found it a boon to be able to let off steam! I also find it depends on my dear old INR levels.
Good luck with it all..... Ann
I think depression is natural with anyone that has health problems on a day to day basis i know In prone to it x
Hi, I have just started on anti depressants due to work and other issues. I've had APS for 13 years and have been fine normally
My husband has depression never had it before he started to get ill he gets very low I would if I had to put up with what he goes threw every day and every one else who lives with this my heart goes out to you all X
I am suffering with depression at moment. Don't know if its the aps or other issues. I have other health problems and also just left an abusive marriage. So I'm kind of not sure what's what at the moment ???
Thanks to you all for responding to this......It is interesting, and although horrid for us all to live with, almost a small comfort to learn none of us are alone with our low times. I have been told that that there is currently no evidence to suggest that depression is a symptom of Hughes', and I suppose, clinically this may be so. However, It is very very interesting to hear of all of us displaying the symptoms, and had diagnosis of depression, when we all have Hughes'. Be it shear coincidence, or a mental state developed due to restricted blood supply to a portion of the brain through low INR; either way, I would wonder as to a direct correlation with hughes.???
Admin may be interested in running a poll of those with hughes with depression, and those without. ? I would be interested to see the results of that one.
Again, thank you. So glad to be a part of this "society". Although we come from different paths and different countries, we are all united in a friendship, through our adversities; and that friendship is sincere, caring and very special. That is worth being a part of.
OK. Time for me to again hawk my favorite recent non-fiction book: "In the Kingdom of the Sick." (Sorry guys if I seem like a broken record -- oh wait! Is using the phrase "broken record" revealing my age?) Anyway. In this book the author points out that there are some important differences between acute and chronic illness. Those of us with chronic illness have to battle the overt, or implicit, societal criticism that comes with being an involuntary citizen of "the Kingdom of the Sick." People who do not suffer or understand chronic illness (and this includes a lot of doctors!) believe that we are somehow responsible for our illnesses and if we just used the right attitude we would be well. Much of this criticism is internalized which, of course, causes chronic illness patients to be more likely to suffer from depression because -- no -- we can't become well simply by wanting to be well.
And yes, I have been depressed from time to time. Having your life expectations changed is a serious downer. But it is what it is. What else can one do but carry on?
Gina, a very concise point, and one that I would agree with. However, if the chronic illness is avoidable with pma (posi mental attitude) why did my condition not improve when I said stuff you, hughes', I am not having this, I will set up a business.? I was rewarded with tia's. Thus, a flaw in the definition, as I understood it......if we think good things and rise above it, we will not have to be on warfarin etc, as we will have mended the biological problem. Please don't think I am criticising you, I know it is what you are reading in the text, but can you see my angle? If the case is right, at what physical illness point (requiring synthetic drugs) does chronic become acute? That is a question directed at the medical profession, based on GinaD's findings in the literature. What do you think?
Gina, I think you hit the nail on the head with the depression and change of life, that is the crux of the problem. Keep fighting, my friend, I am with you all the way.
Yes I have depression and am currently being treated by a psychologist. I feel like I'm at an AA meeting writing that.
I have got close to ending it all several times and begged for a referral from my Lupus consultant. It took 12 months to come through, but he is helping.
I do not know if it part of my APS / Lupus or a result of have a long term health condition, I don't particularly care, my depression is real and only professional help and the right medication can help.
Whether we have APS as primary, or secondary we live with many small problems that others, those close to us, don't see. Some of these problems cause us embarrassment. We see our Doctors, and always manage to forget one the questions we wanted to ask! And even those we care about, even friends, ask after us, and we lie constantly - oh yes, I'm fine answers. Reading up on our diseases is good - but we have to be very careful we don't convince ourselves we have the symptoms or numerous diseases. And when the Coaguchek, or blood test at the clinic comes back with a result of 6.0 for what we see as no logical reason that particluar week we have to shrug, amend dose as required and carry on as usual.
It would be so easy if we all had the same symptoms as well, and not the multitude of horrors that strike causing pain without warning (I woke last Autumn with a kidney infection which gave no warning - & cried at the pain!), or the upset tum that always appears when you least need it.
I hope my general moans make sense. Personally I think we live, and have to deal with a great deal of frustration which can play heavily on our minds.
I find that a low INR lowers my mood - as it impacts on me physically, my mood becomes low too. Some days the effort involved in doing the minimum does depress me. I think I grieve for all that I was and all that I could be if Hughes had not hit.
I also have pernicious anaemia and am due my B12 jab next week and boy do I know I am ready for it - it is as if the world will never be nice again - lol. I have to tell myself that this too will pass!
I think some of it is my fault as I am so stubborn and will not give in - so this morning I have been doing some decorating even though I could have wept with pain and tiredness. Two hours of decorating and I had to have three mini lie downs mid way- lol!
Funny thing is, all my friends say what a laugh I am and often seek me out saying that I cheer them up - happily they don't see me from this side!
Lynn.x.
I can totally relate to what you say. People say I am fun and outgoing, and doing well........little do they know. It isn't nice I know.
Yes me too, I even hide my true feelings of ending it all from my hubby as he would not know how to deal with it. You are the first people I have confided in other than a very good friend who unfortunately lives at the opposite end of the country from me. Everybody thinks I am the life and soul of the party - little do they know.
I am glad you have told us here, Jan. Keep coming here - it has truly helped me to be able to come here and "talk". Could you also talk to your doctor?
Much love,
Lynn.x.
Lynn, thank so much for your comments. I feel I have hijacked this discussion, so when I am feeling a bit better, (I think I have had a TIA this weekend so need to get that checked out tomorrow)I will start a separate post to let you know how I am getting on with the phsycologist.
ooops - sorry I missed you were seeing a psychologist. I have had a bad weekend too - slurred speech again and not really with it - I missed your earlier post 
L.x.
Hi Jan, on the contrary....you have not hijacked this discussion, it is here for us all to say what we want to and feel. Well done you for speaking out, I know how hard it is to publically announce it. I admire you, and am interested in the thread and the way is is working out. It appears a lot of us have this similar problem. You take care. Oh, and I tried the ending it all once.....don't go there.......it is embarrassing, hurts those around you, and makes you feel worse. Trust me, I found it easier to talk it through with someone, even once a total stranger!! They were a bit startled, but sympathised, and the very act of talking things out helped me see a way through. If you are strong enough to consider ending things, you have more than enough courage to fight the lesser beast....that is aps. Always available to chat here xx
Hi everybody
I have been reading your comments wirh interest as I too get depressed or down for no apparent reason. I have Aps and am Lupus positive but have refused anti-depressants as I always seem to pick myself back up eventually. My sister has very active lupus and is taking 2 types of anti-depressants to keep her going.
Our Rheumatologist told both of us that depression is part and parcel of Lupus related conditions.
That is very interesting to hear, thanks for sharing ...makes you wonder reading all these comments, doesn't it?
Certainly does, perhaps it' time for that poll! I will see if I can work out how to do it.
Yes I have been treated with SSRI'S for 20 years......long before diagnosed with APS..however, CLinical Depression
runs in my father's family....he clinical episodes several times during his lifetime as did others members of the family...My paternal grandmother had APS/ from what I figured out....in perfect health until 65 and then had a stroke..
died at 70.....don't know if there is a connection.
AS I sit here this morning and read these reply's and the true emotion and very real concerns this shoe fits all to well. I have an appointment this morning with my pain care Dc. , she truly does understands my problems and is the administrate r of most my med's . This i think is she chose me to be her patient, she treats some other APS patients and saw my file and wanted to learn from me as i do alot of work to try to understand my problems- a true breath of fresh air and i should have a lot more Dc's like her . then today i go to Lebanon to my sleep Dc.who i think is one of those that doesn't understand and i will show her this ????? .If in all the time i have been involved with this group I can't remember a topic and responses so truly expressed than these{ MY memory of course is not the best at this time in my life, been having a rough go of it ,seem to be slipping downward}and people say J be happy -Happy people bring happy people and this comes from those that i thought really understood me ?????.I have had my 3 hours sleep and i am getting paper work ready for my appointments today .Glad i chose to check this site today - i am going to copy these responses and use them.I have a new hemo that on his last report stated --patient doing well with treatment because with his lesions-blood and other trouble and all considered hasn't had any bleeding events so he is basically fine - and these dc's wonder why we have depression!!!! I am and will always be a fighter with this mess i have but there have been times in the last few months i have been having depression. thanks to all who took the time to respond i plan on taking these with me today - they will be of great use -- Thanks J
This is an old post but I am replying to it because the other day I posted something about depression and APS and never got a reply from anyone. It was very discouraging to have no one reply whenI was reaching out for help. I am not sure about the connection between APS and depression but my depression seemed to get a little better when I first got on medication for APS but lately it has gotten worse. I don't know if it is because my APS is flaring up or because of medication or just a coincidence. I had a 2D Cardiogram on Wednesday and am awaiting the results. I have had more dizzy spells lately and some numbness in my arm and pain in my leg. I envy those of you who are in the U.K. You all seem to have a better understanding of your disease and much more support medically. I was diagnosed in July of 2004 but the doctor labeled it "borderline". I was put on baby aspirin and that was it. Not until this past year have my doctors started paying attention to the APS and its connection to my various health issues. I always worry about telling my doctors about the depression because I feel like that just makes them think my symptoms are only due to the depression. I have suffered with depression since I was a child. I have had migraines and dizzy spells since I was a child. I just wish there was a way to find out if APS is at the root of my depression. I have never been on Anticoagulants other than baby aspirin and regular aspirin. My doctor treats me with a beta blocker and a muscle relaxer that works on the nerves. (Propranolol and Methocarbamol) He also has me taking NSAIDs. I just wonder if depression and other symptoms would diminish if I were on anticoagulants. I don't know how to get my doctor to see that this might be a better treatment for me. I don't want to tell him how to do his job but because he has never even mentioned anticoagulants it makes me wonder how much he really knows about APS or how seriously he takes it. I often wonder if I should request blood work again. I am very frustrated by my health and depression is getting worse.
Hi, I agree with everything Kerstin says, dealing with all òur symptoms and with no or little understanding from Doctors leads us to additional stress and despair. I too did not see your depression post-sorry.
I went to my GP last year and ended up in floods of tears - he thought depression and offered me drugs, me - well I was in tears because I was so angry I wasnt understood. Im saying this because I feel there is a fine line between interpretation of our feelings.
Please if you are feeling low and want to chat, post again or pm me and we can talk. Xx
• in reply toHollyHeski
After checking I think what I did was compose a post that I never actually saved so it didn't ever post. I see my doctor on Wednesday for follow up on all of my recent testing. I plan to mention my depression to him as well as ask about getting new bloodwork or see if I should see someone else. It is easy to be discouraged right now since I am also coming down with something. I feel like I have strep throat. I'm getting headache and my throat hurts terribly. Thank you for your response.
Hi,
I will try to answer this old thread; First of all I have not read that you wrote something special about your depression and APS. Which question was that?
It is natural when having an autoimmun illness like HS/APS to feel depressed and many members here have told us about the doctors telling them "it is all in your head" and that they needed sedatives for the symptoms. They did not understand at all! That was not much help!
Especially Neurologists who do not "get" what this illness is about - too thick blood - use to act that way.
Also NSAIDs are the same as Aspirin. Does he/she prescribe double dose?
We are not feeling good when sitting too long as our body likes mowing around. Yes, the HS/APS tends to become more serious over the years especially if you are not properly anticoagulated in time when you need it as most.
This illness runs in some families.
We need a Specialist so I suggest you should not wait but put a new question asking for a Specialist in Dayton, Ohio. That way everybody will see it.
I hope you will feel much better in every way when you have found the right Doctor who knows autoimmun illnesses.
Good Luck with that!
Kerstin in Stockholm
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