Has anyone been soo down, depressed due to ME/CFS that you have resorted to self harm??

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I know this is very personal but any insight will be a help. I have found myself very low at times and depressed because of the constant chronic pain, at times it's unbearable. sad

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  • Posted

    Hope you don't take this the wrong way, but: Doesn't seem like a good way to improve things tbh.

    Very sorry to hear that you are feeling so bad and hope that things start to improve for you soon. Better to give yourself a hug and a stroke than do any harm imo, but I realise that may sound rather trite. Good luck with everything.

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  • Posted

    i have been fed up enough to think about giving up and makeing it easier for my wife... but... i just dont do give up. Been a stroppy git all my life always pushed myself on and always spoken up for others regardless... i have the vie that at the end of each day i look myself in the eyes and decide did i do right today that will always be my judge, so i will keep trying and trying harder, and taking the bad days and trying to get something positive out of each day... did i read enough do enough sleep enough smile at view outside, enjoy the rain / sun/ wind/ experience, did i try........ make little targets and achieve them, even if it seems like making a cup of tea is the best, then make it the best cup of tea and enjoy drinking it! many years ago it was a cup of coffee that saved me, so enjoy and treasure a moment each day, then two moments and then........
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  • Posted

    Yes Rose; I can understand/know where you you ae coming from.  Many a day I have felt, Why?   It's not showing that we are weak.....no.  I often think it's the other way around....to myself, I think, why do I have to just sit around all day, every day?  I'm intelligent....I have had a career running an Emergency Department (which as you can imagine, was a very hectic work load, constantly Thinking,ensuring I didn't lose This Patient)...I have studied with three post-graduate courses...I'm not stupid, so why am I wasteing my life........and when is the end?   BUT do you know what pulls me up...many things: firstly me;  I tell myself that there is a reason why I'm here, and maybe it's to talk to people who are like you (think, why did I find this web-site to begin with...it was by shear fluke); and yes, I have also studied Counselling, so today I feel justified in having studied that Course, and I thank you for letting me make use of this.  Do you have any family....husband/partner, any children...extended family?  to these people in your llife, is another reason and yes, I also know that there are times that I say, "can't they see what is happening to me? Do they not understand? "   and yes, they do....for it is just in the last few days/weeks, that this has been proven...I wonder, have you ever thought about talking openly, firstly to a counsellor/psychologist  (try to to keep away from psychiatrists, as I feel they dig too deep, and sometiimes due to their superior education, they can't reach us on our level)....but I have spoken to a Psychologist, and each time, have come away feeling, that "at last, someone understands......I've actually been able to talk about me, and they have listened !)....do/would  you try that for me?  You have already contributed soooo much to this site, and have proved invaluable,  please now help yourself?  and keep in contact, as that is why I keep checking into site, to talk and to follow others and find out what they have learn't/know, and you have done that....even by talking today, you have opened up  a huge door for all of us, who have all of those thoughts, because of the Sheer Frustration.....talk again soon.
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  • Posted

    I've been extremely depressed at times, and I sure understand how you could be depressed. Especially with chronic pain. This is a very difficult illness to cope with. It goes on and on, and people around us don't seem to get how debilitating it is. And isolating. Do you have anyone in your life you can reach out to? A spouse, family member, or close friend? If not, what about a therapist--someone who believes in the illness and won't tell you it's all in your head. When I sought out therapy, that's the first question I asked. The last thing I needed was yet another person questioning my illness. Finding a connection with someone and talking can help counter depression. I've found that it's helpful to focus on the moment and appreciate what's going on in the present. Otherwise, I get too overwhelmed by "what ifs" and catastrophic thinking. Meditation/mindfulness has been an important tool for me in doing this. There's a 6-week free online course sponsored by the University of Massachusetts Medical Center that's been invaluable for me. The hardest thing about depression, I think, is to reach out at a time when you want to do just the opposite. Remember, you're not alone. We're all in this together, doing the best we can. 
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    • Posted

      Thank you all for your kind replys.i find it hard to open up about the illness as it's not visible. There is no x-Ray or any imaging scans that determine that you have CFS. My family don't really know much because I haven't mentioned it. They will keep on asking me question as why and how did I get it and there is still not much understanding of the illness. I have met health professionals who don't show any understanding or empathy. I have a husband who is supportive but at times I don't feel he understands how I feel. Because of the pain i get irritable about everything, little things get to me. Whether  someone is drinking tea too loud or chewing noisily  can affect my mood and I get snappy with my husband.Deep down I'm not happy because of my pain. In the morning first thing I think is the pain as it's constantly there and I do sometimes feel overwhelmed. This forum is good as there are other people who are like me and it's not all in my head. I would like to get into counselling one day as that seems quiet helpful... And Jackie I live in london so can I do the course online too?
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    • Posted

      Try Googling the following: Palouse self-guided MBSR.  (MBSR stands for Mindfulness-Based Stress Reduction.) Also, I've discovered a pretty powerful way to get others to understand this illness. Years ago, author Laura Hillenbrand wrote an article for the New Yorker, entitled "A Sudden Illness." It's about her experience with ME/CFS. You can read it and print it out for others. It's very well written and powerful. She's the author of the books "Seabiscuit" and "Unbroken," which were made into movies. You can let the article speak for you. This way, you can distance yourself a bit from having to explain things, and let others see how awful ME/CFS can be.
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  • Posted

    Hang in. I don't know your symptoms so hard to give advice but look for the good. Try, as hard as it is in the bad times, to remember the good things. They are there. 
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  • Posted

    Don't be hard on yourself for the Frustaration re noise of tea drinking etc....having read more re symptoms, to us Loud Noises/light are a symptom of CFS....and yes, when someone (my husband) turns the music up above just that one decibal too much,  it makes me irritable too....have to turn it down!!!  Lawnmosers, vacuum cleaners etc do same....but don't be afraid to speak to a profesional Psychologist...they do undestand....as do we all...and yes, there is no x-rays/blood test etc to confirm, and if you like myself, went through every known test there is known to exclude other conditions, like MS, I became Very frustrated, until eventually, I made an appointment with a Doctor (rhuematologist) who I had worked with for many years, and who knew me....that I got my answere, and pain control....keep reading/researching (and printing out for family) and you will come up with all the answers you and your family need....I found a site that suggests it is ?could be a result of the Chicken Pox Virus ????....and I tend to agree.
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    • Posted

      Hi Bronwyn, very good and intersting - chicken pox? i had read the links with Glandualr fever, having had that badly and chicken pox mildly...? also aware of links with chest and oddly sinus infections.... I agree with sharing research with Family and friends as well as your supportive (or not supportive) health teams. It took a while for my wife to understand and ven now doesn always get it and does what i think are daft things but in reality are normal things (i guess) but without here i would be here (i also have heart conditions) Not sure if you Rose but i would be inclined ot get your hisband to read the stories on the forums (and yes yours) to get him to realise how bad it actually is and that you are not alone. we are allk in a deep dark hole some of us find a way out (i did once) which is very hard to see the daylight at the top let alone climb out of. I often think that the radio series of hitch hikers guide to the galaxy had it right when marvin starts to climb out of the hole he made.... I also realise you may not want to share all your posts with your husband but at the same time perhaps it would be the kick up the .. he needs? reading what every one says though would show it isnt just you but hundred of others too!  and remember we are all here for you and each other, good luck and keep trying...

       

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    • Posted

      Yes Andrew..the correlation to Glandular Fever is also on my radar, as after having Glandular Fever in 2005, I feel that is when I REALLY started to deteriorate; I had had symptoms of extreme Tiredness, and muscle pain/weakness etc before this, but it was after the Glandular Fever, that I lost most of my Working Capacity.   The links to the Herpes Virus, affecting one of the linings of the Brain (Encephalus), leads us to the name ME...myolin encephalites...and why some of us have gone through the testing for MS, as some of the symptoms are the same, and in MS, the Myalin Sheath around the nerves is affected.....too co-incidental....I feel that the Glandular Fever could have been a result to my lowered immunity, also a symptom of CFS/ME, and Fibromyalgia...and it exacerbated the existing condition ???? More thoughts appreciated. Regards
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    • Posted

      I agree, Glandular fever does kick the immune system well out of kilter... Not sure about chicken pox, but as a pox virus can do all sorts of strange things... it would be sensible to include it. What got me was the sinus link and made me wonder about visuses and their other relations entering a weakend head area and being able to travel the body. Chest infections again lower the bodies ability to cope, as the body gets very stressed by not being able to have "enough" O2 I wouldnt be suprised if in the end ME CFS turns out to be a large prion type thing. the body can almost recognise it as foreign and flares up in resposne but the prions hide again and so the flare up  / inflamtion receeds to rekindle again later hence the often seen cyclicle nature of up and down days. i wonder if there is a bacterial start or carrier? which only gets exposed when the immune system gets challenged enough eg over training athletes Glandualr fever and bad pox (chicken) attacks even mumps could be immmune lowering enough. other illnesess? are more specific and while not fun may be they dont do enough immune damage? for long enough Flu is horrible but often is at its worst for only a week or two, but flu seems to provoke a very strong immune response where the others provoke weak responses and so last longer.    
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    • Posted

      Thankyou again; it appears that you and I are really intent on researching all sites for information on Why?what is the causitive factor/s....I'm not one to take what the doctors say/medicate without asking why?  After my bad experience in my ealy days when one Musculo/skeletal Specialist tole me "I needed to find a Relaxation Method....go and play a game of Squash"  dumbfounded me, as I could hardly move my arms/legs, and he suggested a game of squash !!!!  He was also the reason why I had to give up my nursing career, which I had spent many years, not only practising, but studing for,by insisiting some Acupunture would help my muscles...and resulted in casuing "Knotted Nerves" instead, which causes "knife-like sharp stabbing pains in my lins regions".....if I'd known better/more in those days (1998), I would have sued him for not only Malpractice, but Loss of Income/supperannuation, mental/emotional trauma.....you mention it, I'd have done it.  My exposure to the Chickenpox Virus was very severe in my 15th year, and also always being exposed to the same virus with children (own) and those in the hospital environments, is one reason why I follow this line of thought.  I also agree with the affects of flu, and it's symptoms, as the reason I first asked for help was one day while working (in the ED), was asking some docs if they knew what could be the problem, as  " I felt as if I had the Flu from my Neck Down"....who knows, we'll just keep re-researching any new information....Bron
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    • Posted

      I had problems in A&E due to doctors not knowing what was causing my heart pain.... my wife and i seporatly researched it and came to the same answer and presented it to the GP and to Prof Kaski who diagnosed me GP went with that and told cardilogsts at "my hospital" on a recent visit i had the situation of chest pain senior nurse and 1 A&E doc knowing what i was talking about the other A&E doc saying he had never heard of it could see how that could happen and it was all rubbish...and wanted to give me Morpine to control the pain... hmmmmmm anywa luckily the 4th doc agreed with the other two so i won 3 to 1 my wife was nearly in tears...i was getting so annoyed and stressed it was making me worse... and i had to stay in longer till doc 4 and pain nurse were happy i would be alright... ME we equally researched (twice) and Prof Pinching and team were a great support. Both wife and self have degree backgounds and i have a lot of coaching qualifications and two world gold medalists so am used to doing ongoing research but it amazes me how many missed oppertunities there are. its like the recent step forward with cancer research this was being done twenty years ago and yet this is now being pounded out as a new discovery whqat happened for the last twenty years?  My Psychotherapy chap who taught me mindfullnes and both my GP's preach being an expert in your own condition. Get a folder write notes copy in information and use it. i do have a large blue folder my docs like it, A&E are less chuffed...  be your expert and get others to help you go forward. Somedays i cant somedays i can but i aint giving up yet... Bronwyn, we will have to set up our own research co-ordination centre though i am not sure what the ME assoc would think of that... I (we) just want to be well at least well enough to be masters of our lives again not some mass of foreign DNA living off us.
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    • Posted

      Hi andrew22534, you mentioned you have had chest pains.  Do you still have them?  Has anyone tried to help you with them?  I have chest pains too.  My 24hr ECG recorded my pulse goes up to 143 just climbing a set of stairs.  I have also noted numerous pulse pressure ratings of down to only 7.  Basically if I'm standing or even sitting up right my pulse is late 90s or over 100 and my pulse rate will be 80% of the time under 20.  Going to see the M.E. clinic in a couple of weeks for their advice.  The hospital Cardiac unit are refusing to see me cos I have M.E.
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    • Posted

      Hi Julie, yes mine is all diagnosed now and on treatment but...... doesnt help having this added extra i have to admit...
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    • Posted

      Was your diagnosis likely to be mine do you think taking into account what I described as my heart rate and pulse rate?  I'm 37yrs old (had ME/cfs and Fibromyalgia for at least 23years).  Any advice would be really appreciated. smile
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    • Posted

      Hi Julie, I would say unlikey to be the same cardiology cant refuse to see you? if your gp refers you then they at least have to examine and do 24 / 48 hour recording and so on... the fact you have ME doesnt mean you cant have a problem with other areas of your body its like them refusing to attend to your brocken leg as you have ME... if you are ok doing so ask the ME clinic to refer you or go to your gp today / tomorrow and ask to be reffered and if refused to give detailed explanation in writing. My heart issues come as a result of being at elite end of sprinting and a reaction to a cardioversion combined with stress at work
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    • Posted

      I'm definately not near the elite end of sprinting.

      My pulse was taken whilst sitting talking with my lovely supportive Gpm it was 98. She immediately referred me to the hospital Gp. That was booked, then a week later the Cardiac consultant cancelled it cos I have M.E. My Gp then had a 24hr ECG done at the doctors surgery. Those results were clearly indicating a heart problem. The hospital date was booked again.  About 2 weeks later the same Cardiac Consultant cancelled again, saying that I have Sinus Tachycardia and the Ischema episodes were purely a red herring. He still will not see me.  My Gp is fed up saying same as you, just because a person has M.E. it doesn't mean they can't have other conditions.

      I am now going to see the M.E. clinic in a fortnight for their advice and support. Hoping if they think I should be seen by a Cardiac specialist if they refer me the Cardiac consultant will struggle against them. Though what attitude he will have might not be good.  As I sit here I might to ask for a different consultant?

      Thanks for getting back to me smile

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    • Posted

      sounds like that cardiologist doesnt know quite what to do, or has some fixed opinions.... see what the ME team have to say,  perhaps asking for a second opinion might get round it, as there is an entitlement to second opinions.... pleasure and good luck!

       

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    • Posted

      Hi Julie;  I've just read this insert that you have put in re your pulse rate...am I reading right in that "your pulse rate is normally 80% of time under 20, and then increases to around 100 - 143  on exercise"  ?     This is a very wide difference...and if pulse can be as low as 20 beats per minute, for a normal person (ie not an athelete)  there is certainly something Very Strange going on....Bron
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    • Posted

      Pulse pressure and Pulse reading are two different things.  Pulse pressure is the difference between the two blood readings.  It's that which is 80% of the time lower than 20. My pulse is between 60 and 145.  Going over 100 always when standing. Thanks for your concern

       

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    • Posted

      Definately fixed opinions of us M.E. sufferers.  We thought showing the results to the M.E. clinic they will hopefully have experience of other M.E. sufferers readings.  With that knowledge they can either back him up but give me some coping advice or tell him to stop being so condition judgemental. So fingers crossed my situation will improve one way or another.cheesygrin 
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