Hello, I havd been using the depression forum of this site for a few years but my symptoms have changed over the years. Ive been seeing the gp more lately and he has sent me for various tests. All the tests have been negative so when I saw the gp today he said I could have ME. He is doing some more tests now!
The main sympyom I have is tiredness. I have other symptoms like depression, lack of concentration, joint pains and dizziness. I would appreciate other peoples opinion on this diagnosis. I just need answers.
Thank you.
David
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Golfer15
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Hi. I have ME. it certainly sounds like you have it as well. I would suggest you check out a list of symptoms. You are lucky if your doctor has recognised it. My doctor is old school and seems to think that ME is made up. I have given up going to see him. I just hope you get a proper diagnosis. It will answer a lot of you questions regarding the symptoms.
Thank you for your reply. It is good to know we arent alone. This site is good for support. How long have you had ME? How has it affected your daily activities.Thanks again.
Hi David. I have had ME for just over a year and at first it affected me really badly some days I was that exhausted that I struggled to even lift my cup to my mouth to have or drink and also doing other simple things like dressing or brushing my hair were hard to do. My wrists felt like they had got lead weights tied to them. palpitations were also bad and I was walking around in a permanent daze. It has affected me in lots of other ways. light sensitivity, noise sensitivity, breathlessness, aches and pains. The best way of explaining it is feels as if the energy has been sucked out of you with a straw. I am much better than I was to begin with but I have now learned to pace myself and I have gone from working full time to part time which has helped me a lot.
This sounds so much like my symptoms. I too feel like I have had all energy sucked out of me. My limbs ache and feel like they are tied down to the chair. I dont have much energy for anything.
I have just got a few hours work a week and I do a half day of voluntary work. I struggle to do that but I know it is better than sat at home.
Hi David it will get easier and you will learn to listen to your body. As I said before if you learn to pace yourself things should get easier for you. I found it very hard at first as I was always on the go but you will get the hand of it eventually. I do voluntary work and I know what hard work it can be. The manager of the shop has made allowances she is very understanding and if I can't manage a job she will ask someone else to do it. This is the only work I do at the moment. I am trying to find a paid job, just hope
another boss will be understanding. I hope you start to feel better soon and remember there is no point worrying over something you have no control over. It will only make things worse.
Thanks for this. You sound very sensible. I think half the battle is in my head. I know there are physical symptoms and my body will tell me to how to cope. As you say I have to pace myself and maybe change some activities.
Can I ask your age. I dont want to give in to this completely as Im only 49 but I have change my lifestyle.
Are you married or have a partner as my wife is finding it hard to understand at the moment. Is there any publications to help partners understand.
Hi David my name is Debbie and I am 41. In answer to your question about being married I am happily single. At the moment I live with my parents (not for much longer as I am moving out at the end of the week). My parent are very understanding as they have seen first hand how it has affected me. I am sorry I don't know about publications but I am sure someone else on this site will be able to help with that.
Thanks Debbie. Sorry to be personal about whether you are married. I just wondered how your ME affects your family. Im glad your parents are understanding. I told mine yesterday that I might have ME and they seemed supportive. It is a bit more difficult with my wife and children. I have two teenage sons. It is like walking on egg shells. I snapped at my son last night over something silly and now he wont talk to me. This condition makes me irratable.
Hi David.no probs. As for being irritable I often feel like telling people to go away and leave me alone. I try not to snap at people but occasionally I can't help myself. Most people who know me know that is not the real me and accept that it just happens sometimes. I am lucky as far as people believing me is concerned. I know a few people who have ME and fibromyalgia this has helped me to understand the condition. I hope your son calms down and realizes you didn't mean to snap at him
Hi Debbie, my son has calmed down but still not really talking to me. Im just taking it easy this morning. Looking at facebook and drinking coffee.
I feel dizzy today. My gp suggested I come off my anti depressants completely. I have been reducing the dose for a while. They have so many side effects. Coming off that may be making me dizzy. This is only the second day without anything.
He said he may put me on something different once the diagnosis is confirmed. What medication are you on.
I am keeping away from everyone in case I snap again.
What are you doing today. Where do you live. Im on the Isle Of Wight. It is a lovely sunny day here. We are going for a walk after lunch.
Hi David. When I first went to see the dr he put me on beta-blockers which made things worse as I was having really bad palpitations and the pills made it worse. He then put me on anti-depressants even though I told him I was not depressed. I finished the box he gave me and then refused to take anymore. All they were doing was spacing me out and making me really tired. I am not taking anything at the moment apart for the occassional dose of co-codamol. I am preparing an old table I have been given ready to stain it, it has taken me days it was covered in 3 layers of paint but at least you can see the wood now. At 4pm i downed tools to watch the grand prix. I am a real petrol head. I live in wales. It was a bit overcast earlier on but the sun is shining now but it has been very cold.
Hi Debbie, good to hear you dont take any medication. I have come off anti depressants and I am pleased with myself. I have been quite depressed but not feeling too bad now. I wonder if the meds were making me feel worse.
I feel like this is a new start now that I know what is wrong with me.
The table sounds good you are working on. I like doing craft work. Especially bushcraft. I love being in a forest and using natural resources.
Have a good evening. Hope you enjoyed the grand prix. Not my thing.
Hi David the table was a DIY project from my new house. I do a lot of craftwork though but it I usually involves sewing or painting. I am just about to set up my own business upcycling clothes to resell. I work in the ideal place to get cheap clothes from as I work in a Red Cross clearance shop. I have already found a local shop that will sell the clothes on commission for me.
Morning Debbie, the idea with upcycling clothes sounds a good one.
How are you today.
I got irritable again last night. It always happens at the end of the day. That is my worst time. My body felt like lead. Do you get this too. I felt no body was helping me.
Im going to the gym soon, just light exercise. I have done this for years as medical people said it was good for depression. I may have to change what I do as time goes on. I get so tired after the exercise.
I have to go to the job centre later. Ive had problems with benefit for ages. Do you get benefit.
Have a good day. Hope you get the table finished. Be good to se a picture both of the table and you. My photo is at the top.
Hi David. I am fine thanks. Feeling like lead is part of the symptoms I am afraid. Be careful with the gym, don't over do it. Don't talk to me about benefits, I went on the dole in November and was told I was entitled to esa. I then went to see the disability advisor who told me I was only entitled to jsa. She is so patronising. The other week she told me I seemed more interested in my voluntary work than looking for paid work and has put me on weekly signings. The problem is where I live their are very few jobs. The table is going to take a bit more work but at least you can see the wood in places now.
You may have m.e but you could have something treatable so I would pursue looking into your health issues. M.E seems to be a dustbin diagnosis given by doctors when they don't know.
Hi golfer15. I've has ME for about 8/9 years now . I went through a long time when I was asked if I thought I might be depressed. I knew I wasn't cos I have been depressed in the past. However I was mightily fed up cos I felt so dreadful all the time. You need to let yr gp do lots of tests and if they all normal explore the possibility of ME.
Klr22 is right if the dr doesn't know what it is then they say it's ME. However there are specific signs of M E and lots of things that can be done to help. Some areas of the uk have specific ME services usually listed under neurological departments. I've read lots of books on the subject and now have something called the Perrin technique...Google it. It's not available on the nhs unfortunately.
Symptoms vary from person to person as does the severity of symptoms. It has affected my life. There are lots of things I can't do now because of fatigue...or if I do it I need to build in some time for recovery.
I have reduced my hours at work to 3 days, and I was very specific what days I asked for I wanted wed and Friday off do I could have a break mid week and spend Friday recovering so I could spend quality time with my family. As it was I used to spend all weekend in bed....not healthy for your social and family life.
I hope you get some help and get on the road to recovery
Thanks for your reply. My gp has done lots of tests recently and all have been negative. He suggested ME as a possiblity.
It is good to hear you work part time as I have a part time job too which I dont really want to have to give up. Do you drive, I find that difficult as I cant concentrate much. I am having a CT scan to rule out other things and I am seeing a psychiatrist.
Hi yes I drive, but only short distances. I'd never go anywhere more than An hour way. I used to have a lot of brain fog but my concentration is much better these days. I'd be very careful of driving there and back if say I was going away for the weekend, because I don't know how I'd feel in the way home. Likewise in stressful situations eg a hospital appointment because things like that tire me out . I had a lot of help from occupational therapists and CBT , learning how to pace myself and accept that I need to do things differently. Good luck with your diagnosis.
Hi David. I’m going to throw my hat in the ring here. I have had problems with insomnia and pain due to having RLS my whole life, (before I can remember apparently). And have lived most of my life in a near fugue state! At the beginning of 2014 things took a turn for the worse and the little sleep I was getting did nothing. Things progressed slowly getting worse by summer. I wasn't able to do much and my memory and concentration went to hell. I struggled through work and slept most of my life away at home or if the RLS was bad I spent the nights rolling round the floor downstairs as I was too exhausted to walk, (RLS suffers will know the urge to walk).
Anyway could go no further by Jan of this year and dropped. Went to GP who did very little. Went to Occupational Health to pressure GP who has pointed me towards this:
Although he is putting exhaustion under investigation on sick line he things its CFS – although needs to rule out other things first. SO I have a 14 month waiting list for neurology, the pain clinic referral that the Dr was meant to put in last July has gone in in Feb of this year meaning another 6 months wait, (b@stard Dr).
Thankfully my Occ Health Dr is a bit more up to speed and another pt had seen a Dr Weir from Harley St privately and had some benefit. I can supply email address phone number if anyone wants. Any way he also suggested that I try gluten and dairy free diet, (not great but I’ll try anything if it helps), at least there is something I can be doing.
Anyway getting back to your question about the family – I have three kids 8 – 12 and one very understanding and loving wife. I have been very snappy towards the kids as when they kick off about something it seems to fry my head. I have been down for so long with this condition that I have adjusted a bit and if I think I am unable to deal with the kids effectively I leave or if the Mrs sees me she will give me ‘the eye’ to tell me to leave or try a different approach, (the 12 year old is 12 going on 45!!!).
I have sat down and spoke with the kids explaining the situation and how I am very unhappy about it and how that means I can have difficulty coping – they understand and help me that wee bit more – if they are off school they will help out with cleaning as I can’t do it all and its not fair leaving it all for my wife. I have found PACING helps some ghood info here:
its meant that instead of struggling on and wearing myself down I now break up all my jobs and do what I can, (can go for a half hour), then take a 15-30 min rest, (not watching TV or reading lying down either meditating or dozing). I can get more done but nowhere near what I could do, (used to come home from work and do in an evening what now takes me about 3 days).
David, chat with the kids – teens can be ‘challenging’ I was thinking of other words but they might get censored They will have had trouble adjusting to your new role and the impact that has on them, (dad is no longer invulnerable/able to do whatever for us).
Thanks for this message. My situation is just like yours. I have to pace myself during the day. I work part time but even thinking that is too much. I do voluntary work but only a few hours. I do jobs at home but have to rest after. Ive just been to builders merchant to buy some wood for a job in the garden. Im exhausted now so sat having drink with my feet up. My head is spinning and legs ache. It will pass in an hour or so. I have to plan the next stage of the job anyway.
As for the kids, my 14 year old sounds like your 12 year old. He thinks he knows everything and really wont accept my condition. I will try talking to him but always end up snappin. My other son is 17 and is accepting this more. My wife is very supportive. She works full time. I do most things at home. ( I have to hang washing out now, should have done it earlier).
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They will have had trouble adjusting to your new role and the impact that has on them, (dad is no longer invulnerable/able to do whatever for us).
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