I am new to this site. I have been looking for a while to find a community which may be able to offer moral support, and hopefully I have found one!
As it stands, I am not yet officially diagnosed with M.E., but I am fairly sure it must be what I am suffering with. I am unsure if there is a direct connection, but, as a child, I was often ill with throat infections and as a consequence, prescribed anibiotics on a regular basis...say...4 times a year. This went on for a good 4 years throughout my childhood and then when I left home at 16, right up to my tonsilectomy, when I was 19. I fear this may have damaged my natural immunity. Also I have suffered significant, stress throughout my life, beginning from day one really! I cannot actually recall a drama-free year! I believe these combined factors may have led to this illness.
I am currently in a new relationship and looking for work. I am finding it very difficult to find work due to the competition for jobs in the area I live. I am trying incredibly hard though, because my new partner should not have to be in the position of supporting myself and my child. Obviously, I am finding the situation stressful. Alonside this situation, I have endured a miscarriage, (a month ago), my cat was run over and our landlord has been nothing short of bullying us to the extent we have chosen to move. These factors are adding to my stress levels.
I am trying so hard to reduce my stress levels, because I know this is not going to help me feel any better. Right now, I am completely run dow. I have a perpetual cough/ cold and feel generally fluey. My brain is all over the place and I can't seem to focus on anything. I am forgetting appointments and I feel so cross with myself. I am supposed to be an adult and yet I am beginning to feel much like a child because I feel I need looking after by my artner. I never put him in this position, but often he will ferry me around in his car due to me being late, or aching, or exhausted. I just want to be free from this.
I am unsure whether the illness is causing the stress/ depression, or whether the stress is causing the illness. Possibly a bit of both?
Can anyone offer me some practical advice on how to deal with all of this. I am only 34. I feel like my life is over. Please help. Thank you.
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RachelHNC
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Welcome to the Myalgic Encephalomyelitis Community!
We are very new but working on expanding and it's great to see you here!
If u post I will always try to reply if I can!
I set up this community to offer support and understanding so I'm glad you're here
Sorry to hear you're having such a bad time.
What are your symptoms?
And when and how did they start?
I know u said u had lots of illness when you were a child and as you grew up, but when did the symptoms you're having now start?
The reason I ask is because I can't really answer your questions without knowing a bit more about these things.
BUT, obviously you don't have to tell me anything and please don't feel obliged to say anything at all - you must only ever say to anyone what you want to and feel comfortable with.
If you do want to reply though, I'll see what I can do to advise/support you!
It's up to you
I'm not a doctor but have a lot of relevant long term experience and knowledge so will always do my best to offer info and guidance, but it's not formal clinical advice which obviously comes from doctors.
Many doctors don't have experience of ME and/or understanding and/or knowledge of the condition.
Some doctors based on complete ignorance of the thousands of research findings, and international recognition of the condition Myalgic Encephalomyelitis as neurological, don't even believe it exists!
This is why fellow patients and people with personal experience pointing in the right direction or offering info and insight for you to consider in terms of your own individual circumstances can be particularly valuable!
Please do reply if I may be able to help.
If you don't want to answer my questions you can still say/ask anything u want about ME here and seek support.
Hello! Thank you for replying so promptly! Bless your heart.
I have been experiencing these symptoms ever since I was about 21 I think, looking back. I am now 34.
The symptoms are basically not being able to function like most other people, (or so it would seem). I have limited amounts of energy, so I have to be careful what I sign up to and often have to plan ahead and get things done in advance because I know I will be wiped later on.
Specifically, it is complete exhaustion...So, headaches (particularly behind the eyes), muscle tension, I hate this part if the tiredness, but I get really ratty. I always try to explain it's only because I'm tired and the person I am being short tempered with has done nothing wrong. My brain seems to mist over too, so I get really confused and forgetful. I am beginning to lose what little confidence I have due to the latter.
I believe I may have had glandular fever as a child, although I am unsure as I am estranged from my mum and she preferred to try alternative remedies on me and only called the doctor in extreme cases. So, the antibiotics I had must have been when she was really worried about me.
I think I could do with losing a bit of weight (I am currently a 14 and am usually 10/12). The last few months have been extremely stressful though and I fear I have been comfort eating to compensate.
I also wonder if exercise will help me. A friend of mine has told me how much extra energy it has given him. The trouble is, I can barely muster the energy to get through the day, let alone take up exercise. My muscles are aching so much at the moment.
This all sounds like I am just a big old whinge bag doesn't it?! I am so sorry! I am not normally like this! I seem to have misplaced my usual positive attitude though!
I really appreciate your time and any advice you may be able to offer. I understand you are not medically trained but I do feel advice from someone who has been in my position will help me so much.
Again I just want to say how sorry I am that things have been so hard and you've been feeling so rubbish.
It's a difficult one if you don't know how your symptoms started.
I don't think having antibiotics as a child would have damaged your natural immunity, and if your current set of symptoms didn't start until you were 21 then it's unlikely to be caused by any illness you had as a child.
Were you depressed and/or anxious prior to developing any physical symptoms? Or were the physical symptoms there first?
In Myalgic Encephalomyelitis depression and/or anxiety are
not causes.
Some people over time from struggling with chronic illness, disability and physical symptoms find that they eventually get depressed as a reaction to this - as is common In chronic debilitating illnesses - but depression is not a cause.
The symptoms you're describing could possibly be ME, but may be fibromyalgia syndrome - depending on your pain characteristics - or may be CFS depending on prominence and characteristics of pain.
Have you talked to your GP about your symptoms yet?
It would be important to do that so they can fully check out your symptoms.
I know you might be worried about being disbelieved or fobbed off, and this is understandable and is a common concern for people, but it would be a good idea to discuss with your GP.
If you go in to the appointment prepared hopefully you'll get further!
Don't beat yourself up about gaining a bit of weight. I also would say at least for now don't stress yourself out trying to lose weight when you're already ill and struggling.
Maybe just focus on trying where possible to avoid comfort eating too much so u don't gain more weight and just stay as you are for now.
Again, I understand that must be difficult and is also a common struggle for people with chronic illness.
Exercise is a difficult one as it depends on which condition you have
- in ME exercise is a disaster area as patients have a scientifically proven physiological intolerance to exercise. This applies to both the heart and the muscles to name but some of the body parts effected.
Patients with ME are often given erroneous advice to gradually increase exercise - and this has terrible consequences for people with classic ME. For example there have been innumerable cases such as this example: People who have been able to walk and work part time have been 'prescribed' a graded exercise programme and ended up as a direct result of the exercise being too much for the body in ME, relapsing severely and becoming bedbound or wheelchair bound and unable to even care for themselves let alone work as a result of the exercise and many don't recover to their pre-exercise 'therapy' level so has tragic long term effects.
Many NHS consultants who have advised patients to undergo graded exercise, or graded activity, and the above sort of deterioration in the patient's condition has been caused as a result, have had to apologise to patients.
However unfortunately the wider NHS still advocates GET, GAT and activity management which all involve progressively increasing exertion to patients, which defies science and patient experiences and ignores the voices of charities and patients groups who continually fight for the NHS to change their standard advice on this.
- For patients who meet the less specific CFS criteria exercise may or may not help or may make people worse.
For patients with fibromyalgia syndrome (FMS) without ME, exercise may help. Many FMS patients report that light gentle exercise can help them.
Although not all people with FMS find exercise helpful.
- For people with classic ME as defined by the International Consensus Criteria, who in addition also meet the fibromyalgia criteria in these cases exercise is not helpful to improve symptoms or the overall condition. In contrast, exercise is very unhelpful.
The only exception being - in some cases - very gentle light stretching of muscles.
- for depression without ME, exercise is helpful usually in increasing energy and mood levels
All this is generally speaking.
When your friend said that exercise helps a lot to give more energy and feel better, this is true in most people's bodies - this is the normal physiological and emotional response to exercise.
However in ME the biomedical mechanisms of the illness impair that normal response to exercise so exercise does not have the common effect on the body in ME patients - it actually causes more problems for the body and can be medically dangerous if ME patients are pushed to exercise despite symptoms.
You will see graded exercise therapy or GET for short often promoted including across the NHS as 'treatment' for ME.
This approach ignores all the scientific evidence showing that graded exercise is harmful for ME patients and the damaging effects of exercise on the ME patients' bodies.
But unfortunately it is very prominent.
This approach is based on the theory that 'CFS/ME' - Which have been inappropriately amalgamated together - is caused by psychosocial factors - or at least maintained by psychosocial factors.
This theory ignores the literally thousands of research papers showing multiple biomedical abnormalities in ME patients' bodies and central nervous systems.
In ignoring all these proven facts, this approach considers that lack of energy and disability is due to nothing more than 'deconditioning' of an otherwise 'healthy' body - ie people resting too much and not exercising.
So the theory is that by increasing activity and exercise levels, the patient will miraculously recover.
This theory and approach is completely flawed and contradicted by masses of biomedical research results and also completely contradicted and discredited by the adverse effects ME patients experience when they undergo graded exercise or graded activity (GET or GAT or Activity Management means gradually increasing activity or exercise regardless of symptoms) which makes them deteriorate, often severely.
So in answer to the exercise question, it really depends which condition you have!!
Are u planning to see your GP about your symptoms?
that was a well thought out reply very up to date and very helpful to many .considering the amount of medical papers i have managed to read recently this reply was very concise and not to tiring to read.
I know the feeling of waiting for diagnosis I went back and forth to every GP since 2012 continuously told it was nothing until finally the GP I have now suggested it could be M.E took over a year after he suggested that for the official diagnosis only weeks ago considering the 6Months I waited each time to see a rheumatologist.
You must be doing brilliant studying and looking after your child too. I'm only just about managing studying would be hard to cope with anything else added to that too! So well done to you sounds like you are doing pretty awesome!
I do see myself getting very irritable at times and my mood shifts easily. It's just one of the many symptoms i try not to worry too much about it. I feel sometimes it's a case of a good rest to feel less annoyed. Tiredness and pain is bound to make us feel that way so do you beat yourself up about it just try to recognise when you are feeling slightly annoyed or short tempered and it might help you deal with it that's what I try to do works or at least helps.
M.E does actually affect metabolism in some cases and medications can cause weight gain I find my emotions more intense too therefore stress eating. Im off for Xmas now and eating like it's Christmas day lol
Lighter exercise is a good way to start If you're wanting to workout. I find I need stretches daily to keep my legs going, my personal opinion is regardless of weight I felt more activity made me more mobile. I found tai chi perfect for me and I did go to the gym regularly in the summer. It's all trial and error just do as much as you can of any exercise. The first day I went to the gym I only did half an hour or less just gave ten minutes to each thing and didn't over do it. Even use YouTube to find whatever exercise you fancy if you would rather do it at home or get a wee exercise dvd.
I'd say just enjoy Xmas and don't worry for now I have a cheek to talk hardly exercised since the summer I tell myself the diet starts in January.
Good luck with the diagnosis and finding work It is so hard these days with so many people going for the one job. All the best x
Sorry u lost the reply u wrote, i've been having trouble with HU when writing mesaages the past few days too Hope healthunlocked sort out the problem soon as it's so frustrating losing what you've written isn't it!!
Just reading your story I truly thought it was my life you were talking about! I have only just joined this community like you I dont have a diagnosis but I am convinced I have ME or CFS.
I see its been 3 months since your last post, you mentioned you were going to a CFS clinic, did you have any success?
I had to write to say hello and I hope you are well.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hope healthunlocked sort out the problem soon as it's so frustrating losing what you've written isn't it!!
Still In The Bed
Living with ME