I need some advice please and support

[Dant88]

My name is Dan I am 29 years old and when I was 11 I had to help care for my dad who got diagnosed with ME. He was 28 when he started suffering bad. I lost a lot of childhood doing the shopping paying bills etc as he was bed ridden with it all.

When I was 18 I was diagnosed with a hiatus hernia, acid reflux and chronic gastritis. I have lived with this for 11 years. It’s got worse every year, but the docs won’t operate due to my ages.

In the last 6 months I have felt there is something else.

3 years ago I went through a lot of emotional trauma, suffered severe depression and had on going stress everyday for 2 years.

I got over it all, came off the very strong anti depressants I was on and turned my life around.

Recently, I have been bed ridden for day and sometimes weeks at a time due to tiredness, headaches, too much sleep, not enough sleep, headaches, migraines, stomach pains, contstantly sniffly, but no cold, coughs, when I go out, the bright lights effect me. I feel sick at times, either have diareahh or constipation all the time. In turn this has effected my mood and social elements again.

I am at wits end.

I want to know what’s wrong with me.

Doctors keep saying it’s depression again, but I feel weak day in day out and struggle with day to day activities.

When I push myself to exercise to keep fit, I can suffer for days being in bed.

I am starting to wonder if I have the symptoms of ME.

Can anyone tell me is it known to be hereditary? Or is there a trigger?

I have suffered stress all my life from a young age. But life is great now apart from my health.

I feel I’m letting my partner down and I feel lazy, but I can’t control it....

I find it odd that my dad was exactly the same age when he got it....

Please can someone shed some light on things and offer some guidance or advice?

[SusanDW]

Bless you Dan. It's funny coz its not until you look back that things start to make a picture....After so much suffering. I am at exactly the same point you are at and I think you just need to keep on at your gp. I think they don't particularly like to diagnose what isn't black and white, but that doesn't mean it's not there. You know your own body. Good luck

[Dant88 in reply to SusanDW]

Thank you Susan

[Plen]

Hi Dan

I'm sorry to hear about your illness.

I'm afraid the above advice does not represent my experience of ME in certain respects.

I have never been informed ME is a mental health issue from anybody in the medical profession. It even states on the NHS website it is not psychological. I'm pretty sure it is listed as an immune disease by the WHO. It will certainly test your mental health that is for sure. You can survive this condition if you are diagnosed with it. You will just need to accept and adjust to a new lifestyle. The human spirit can do amazing things in the face of adversity.

It may be hereditary or it may be in everybodies genes, but it takes the right combination of environmental factors to trigger it's expression. I'm afraid I can not confirm this as there is no scientific studies proving or disproving this.

You have mentioned stress a lot in your post. You should try to address this as much as possible. I had co-existing PTSD and once that was treated my symptoms became less severe. I do not think the body being in a state of stress facilitates healing. Speak to a councillor, therapist, trauma specialist or whatever you feel will work best for you. Look up meditation on you tube video for free help. Yoga with Adriene is good if you can manage it. She does short videos and you can pick and choose the best ones for your level. Do some stretching whenever you feel able - it won't torch through your energy supplies and it will keep you healthier than doing nothing.

It has been a long harsh winter. Check your vitamin D levels. Mine are low and they did the test after I'd been in the sun for a week (and I was already suplimenting with 1000 units per day). I didn't see the sun for months when I was bed ridden - obviously this is terrible for your health. Try get out in the open air everyday if you can. Live in the hope summer will help lift the severity of the symptoms.

There are several new hypotheses being tested and showing results for a possible cause, which are bringing us closer to a test and therefore possible treatment.

One final tip! I had a good day on Saturday and felt strong enough to try some wine. My advice is stay away from booze! It made me crash faster than a three mile jog. Panda eyes are back and a bucket full of regret.

[Dant88 in reply to Plen]

The above advice does not coincide with me and how I feel and suffer and also how I have seen others suffer too.

My immune system is awful with other problems I have too, so keeping it boosted is very difficult.

Thank you for your advice.

I do believe the stress has been a massive factor on ALL of my conditions and worsened them.

Yes while I do suffer from mental health problems, it is mainly because of my health. It brings me down. I have had the support and help to get me through what I been through in life and I don’t feel that is a bearing on how I feel now. I know my body and I feel completely drained 24/7 at the min. Las night I had 4 hours sleep and today I feel worse than I did yesterday. Each day is different at the minute.

My mum also has fibromyalgia which is another avenue to explore.

I am just so confused and angry with myself that I have so many problems at 29.

[SusanDW in reply to Dant88]

It is irrelevant what age you are. Yes you are only 29, but being 29 means you have the maturity to deal the hand that's been dealt...Rough as it is. I know it's hard to deal with but you can. You've touched on mental health..But that doesn't need to be all negative. As you are tuned into it realise that you also have mental strength.....You must have to deal with what you've dealt with. Look after yourself, hour by hour until you can do day by day, and focus on your successes no matter how small. I became t1 diabetic at 30 and grieved as I thought I wouldn't live to see my family grow up. I am here at 50 with grandkids. ...And a whole host of other health issues. Find your family/kids/grandkids (hearts desire) and focus on that. It makes dealing with the other stuff bearable.

[Brendanaylor]

I was diagnosed with fibermyalgia after an operation me followed my mother who is 82 started after hip replacement my older sister started been ill at 60 she has started fibermyalgia so we have it just need a trigger to start it ask for a second opinion keep a diary what you feel like emotionally and pyhsiclly see what another thinks

[Dant88 in reply to Brendanaylor]

My mum was diagnosed with that too, 5 years ago and is using a mobility scooter to get around. I’m hoping it’s not that either as I know how bad people suffer with that also.

There is not enough support for people with varying conditions.

[Brendanaylor in reply to Dant88]

No and it depends what area you live in too

[Calliepet]

My daughter and I both have ME/CFS and it is common to find it in more than one member of a family so I think there is something in the genes that leaves us vulnerable to this illness. It doesn't matter if it is or isn't ME/CFS as the life style changes you would make good diet, good sleep, remove stress are not going to do anyone any harm. Catch it early would be my advice. Make big changes now and you might win, dedicate the next 3 months to yourself. Rest as much as you can (no TV, no reading, no gaming just music or audiobook), in bed by 9.00 so you can wind down to sleep by 11.00, if you work rest in your car during the lunch hour, book days off and just rest, no socialising, no exercise. Say no to shopping trips, long drives, holidays, all that normal stuff will have to wait for 3 months. Explain to your partner how important it is to sort this out now and try to get rid of the guilt. Would you feel as guilty if you had cancer or heart disease? I did a course on Mindfulness for stress relief which helped . I also have a mantra, don't stand if you can sit, don't sit if you can lie down. So sit on the edge of the bath when you clean your teeth, bath not shower, save all those little bits of energy to use for more important things. I find low dose SSRI (20mg fluoxetine) helpful, if your doctor wants to prescribe for depression you could give it a go.

[Karenlynne]

You have successfully come off antidepressants and perhaps other medications so first of all well done you!! You are obviously a determined young man. Some of the but symptoms mimic ibs.(i.e. all or nothing at the loo). Migraine.disturbed sleep pattern as well do point to some degree of stress which may well be caused by the m.e or even the rear of your getting m.e. As a sufferer of both may I suggest you try something like l theanine supplements which may ease anxiety and help with sleep.( I take 100 my in the day if stressed and 200 to get to sleep and 100-200 my through the night when I wake up) Another one is called gaba. Both were recommended to me by my GP who specialises in chronic fatigue syndrome. If you really want to know if you have m.e you could have a mitochondria function test which measures the amount of mitochondrial membrane in the body. This will give you the levels in comparison to those of normal functioning levels. Expensive. Yes. Worth it? Definitely. If work is problematic you also have proof of your condition and can claim relevant benefits. As previously mentioned everything takes energy physical as well as psychological. For me even having the curtains open is unbearable much of the time!! Your immune system may well be depleted so you may be more prone to infection as you probably already know. I'm on a wheat gluten sugar dairy diet as recommended by Sarah myhill. Read her book chronic fatigue syndrome mitochondria not hypochondria and see if you recognise your symptoms. Also take a bucket load of supplements. They help some. Most of all rest both body and mind. As suggested read up on mindfulness. It does work and is very helpful. There are plenty of books like I am here now that will help anyone to live in the moment m.e or not. Having m.e and dealing with the day to day existence of it is enough to make anyone feel ill,so having previously suffered from a bout of depression/ anxiety it's a sure way to retrigger the black dog. Let your partner read Sarah's book so she can gain more insight and understanding of what you're enduring. And try to not look back at what happened with your father. Times have changed. New trials are being done and new treatment looked at.eg have just had an oxalate test with sky high results so am waiting to see what happens next. It doesn't have to be the same for you as it was your dad. Good luck. Anything else I can help you with please let me know. Karen L

[Mandy211077]

I really feel for you missing most of you're childhood, and now your ill I'm not sure its hereditary but my mum has fibromyalga my great grandmother had ME ,you symptoms sound similar to what I got I constantly had acid reflux for a year in 2015 I want always sick I've had ME for 8 years and keep relapsing. Go to you go and also keep a daily diary it helps them understand.

I hope you get well you need a break from illnesses after looking out for you father so many years.

[Mandy211077]

Go to your gp I mean

[BeckOlesen]

The condition ME is not caused by a virus despite previous evidence to the contrary, scientists have announced. The illness, also known as chronic fatigue syndrome, is triggered by infections in the blood which are not fully understood.

Although scientists do not know exactly what causes M.E., they believe it may be triggered by a combination of factors such as exhaustion, a traumatic event and an infection which weakens the immune system.

Experts also believe there may be a genetic link, with some families more prone than others.

it was properly recognised as a medical condition in 2002, when the then chief medical officer Sir Liam Donaldson classified it as a 'debilitating and distressing condition'.

So it is not considered a psychiatric illness, but a recognized phy, sical disorder. In 2005, a study by University College London found the physical symptoms of the disease were often exacerbated by psychological ones.

There is a possibility that SOME cases of cfs/me MAY be triggered by a virus that 95% of the human race is infected with during childhood. In people with normal immune systems the virus remains inactive. This is the Human Herpesvirus 6 (HHV-6). The virus's DNA integrates into the structures at the end of chromosomes known as telomeres and furthermore, this integrated HHV-6 genome can be inherited from parent to child, a condition commonly referred to as "chromosomally integrated HHV-6," or CIHHV-6. 0.08% of the UK population has CIHHV-6 and those who inherited this from a parent may be less able to defend themselves against other strains of HHV-6 that they might encounter. Medveczky reports that some of these individuals suffer from a CFS-like illness. In a cohort of CFS patients with serious neurological symptoms, the researchers found that the prevalence of CIHHV-6 was over 2 percent, or more than twice the level found in the general public. In light of this finding, the authors of the study suggest naming this sub-category of CFS "Inherited Human Herpesvirus 6 Syndrome," or IHS.

[BeckOlesen]

DANTE this is important. Don't get overly obsessive on ME as this kind of worry alone will make you get sick from stress and I honestly do NOT believe you have ME.

I believe you absolutely may be suffering from SSRI DISCONTINUATION SYNDROME. Every symptom you list is a symptom of SSRI discontinuation syndrome!! It is often misdiagnosed as a relapse of depression and, ironically, the only way to stop the symptoms (and easily determine if this IS the cause) would be to take a low dose of the SAME antidepressant. If it is SSRI-D.S the symptoms usually disappear the same day you take a pill. MANY DOCTORS DO NOT SEEM TO KNOW ANYTHING ABOUT THIS PHENOMENA which is why it is SO often misdiagnosed or ignored by lazy doctors.

Symptoms of SSRI discontinuation syndrome: Runny nose, sleep problems (insomnia, sleeping too much) fatigue, muscle weakness, stomach and gastrointestinal problems (nausea, diarrhea, stomach pain/cramp) headaches, muscle cramps. Also something many people call "brain zaps" something like a mild electric shock in your head that shoots down, sometimes down your back or arms - they are uncomfortable and painful and you may be experiencing this. Other symptoms: vertigo or dizziness, lightheadedness, anxiety, sweating, nightmares or vivid dreams and visual disturbances (trails, after images, pupils do not dilate or contract normally). There can be many more symptoms and symptoms related to mood.

You did not name the antidepressant you were on, if you simply quit or stepped down the dose gradually, or when you stopped taking the med. But, based on the 3 years ago 'every day for 2 years' and the symptoms began roughly 6 months ago timeline you stated, I'm guessing the symptoms began within a few weeks after you stopped. The symptoms may begin within a few days or not for several weeks and can last for 2 or more years. It's different for every person and some people do not experience this problem. Some antidepressants are more known to cause this & taking them for 2 years or more can make the symptoms last longer and be more intense.

Find a SYMPATHETIC doctor, not one who dismisses what you say and/or be more vocal and firm when speaking to a physician. Try not to get upset (I know it can be hard) or they are more likely to dismiss what you say. Don't allow them to TELL YOU...make sure you are heard. Google SSRI Discontinuation Syndrome and be prepared to see the doctor. Make sure they understand you need to take the SAME medication to test whether this is what's causing your symptoms. Since they think it's depression anyway they shouldn't object to prescribing it anyway. (If you happen to have a couple tablets left, I would take one. You'll know within a few hours if the symptoms magically start to clear up that this is what's wrong). But I have a strong feeling this is what's happening.

GOOD LUCK AND PLEASE LET US KNOW !!!!!