ME / CFS is a Real Disability! Questions? Ask Here!
What is ME and CFS?
Myalgic Encephalomyelitis (ME) is also known as Chronic Fatigue Syndrome. This is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness.
My Story - Me and ME
I am Joy. I am a listener here on 7cups and i am not without my own struggles, i have many health issues mental and physical and i live with ME/CFS. There are good days - there are pretty damn bad days where i am completely bed ridden. I have chosen this time to tell you of my health because I believe the awareness of this illness is important.
You Can Ask Anything!
If anyone has any questions please ask away - I can't speak for anyone else's experience but i can explain mine. Whether you are a sufferer yourself, or you have a family member or friend that you are unsure how to support or just want to know a lil more. Please ask - No question is wrong - No judgement here!
Below are a few bullet points about ME and CFS…
- There is not a specific test for CFS/ME, so it's diagnosed based on your symptoms and by ruling out other conditions that could be causing your symptoms.
- Treatment for CFS/ME aims to relieve the symptoms.Most people with CFS get better over time, although some people do not make a full recovery. It's also likely there will be periods when your symptoms get better or worse.
- Living with CFS/ME can be difficult. Extreme tiredness and other physical symptoms can make it hard to carry out everyday activities. You may have to make some major lifestyle changes.
- CFS/ME can also affect your mental and emotional health, and have a negative effect on your self-esteem.
Below is a summary image of a few of many symptoms people experience with ME/CFS…
https://www.meaction.net/ - Action for M.E. tackles ignorance, injustice and neglect for people whose lives have been stolen by M.E.
Remember.... Please ask anything you wish - No question is wrong - No judgement here!
Stay Strong and Keep Fighting!
- Joy <3
@JoyfulUnicorn Hi thanks for speading awareness about ME. I have had ME for 20 years and have been homebound for the last 10 years.
@adventurousBranch3786
Sending Spoons! Stay strong and keep fighting you do not have to experience this alone!
-Joy <3
@adventurousBranch3786Do you get any remission and relapses for instance feel good enough to do something which then triggers a bad relapse?
Hi Joy, another spoonie here.
How do you rest? As in, what do you do to make yourself comfortable? Do you have little tips, tricks?
Do you find yourself speaking more harshly to yourself when you're very fatigued? I've found that, although it often initially looks like encouragement (eg "you'll be alright" "you'll feel better tomorrow" - but what if I don't feel better? I need to be OK with not feeling better).
On fatigued days, do you have to retreat away from people or can you be around some people?
@Rosa9570
How do you rest?
Okay so for me personally i i find the best way for me to rest is just lay and watch netflix or if im really lucky do a little bit of colouring..
As in, what do you do to make yourself comfortable?
To make myself comfortable i have a V pillow and i love my blankets and teddies. I am 19 but they give me comfort especially when things get tough.
Do you have little tips, tricks?
Honestly, its about learning what works for you, but its important to always remember to be kind to yourself. Its not your fault you are unwell. Cut yourself a little slack.
Do you find yourself speaking more harshly to yourself when you're very fatigued?
Yes. I personally do as i i strugg to accept i am unewell and cant do what others can do now.
Can i be around people?
On my bad days i prefer to just lay in bed and be alone, i i dt mind being on video call to my friend, and my partner jn the same room but i dont like physical contact because of the pain... Also i dont want the need to be mentally awake as that is exhausting too!
I hope me sharing a lil bit about my experience helps you feel less alone! Spoonies stick together and i i sending you many spoons!
Stay Strong and Keep Fighting!
-Joy <3
@Rosa9570
Generally I want nothing to do with the entire world when it's really bad, but my husband is the exception because I sort of need him to help me, I don't really have energy to chit chat, though.
It's gotten to the point where I know tomorrow won't be better, the last 12 years of tomorrows has only become harder which has basically caused any optimism I may have once had about feeling better in general to have disappeared years ago. I know how depressing that sounds but it's my normal
Great post.
I have got some questions:
- What causes CFS/ME?
- Is CFS/ME more physical illness or mental health condition?
- How common is CFS/ME?
- Is CFS/ME more common in males or females?
- Are there any risk factors for CFS/ME?
- Can CFS/ME be prevented?
@gentleSun78
Hi sun - i will reply to your questions shortly - sorry for not doing so sooner as i i ha been self caring!
-Joy
@gentleSun78
Hi sun! Sorry for such the late response to your questions. Here is my knowledge upon these from experience and research! Though everyones situations are different!
- What causes CFS/ME?
There is no specific answer but some expamples of what can cause chronic fatigue consist of...
Viral infections, such as glandular fever. /// bacterial infections, such as pneumonia. /// problems with the immune system. /// a hormone imbalance. /// mental health problems, such as stress and emotional trauma./// your genes – CFS/ME seems to be more common in some families.
- Is CFS/ME more physical illness or mental health condition?
This controversial illness is sometimes presented as a psychosomatic disorder that requires psychological treatment. However, there is no compelling evidence that ME/CFS is a mental health condition and increasing evidence shows it is a biological disease with a range of complex symptoms. It does not invalidate the illness and make it any less real.
- How common is CFS/ME?
- Is CFS/ME more common in males or females?
Women are two to four times more likely than men to be diagnosed with ME/CFS and tends to develop between your mid-20s and mid-40s.
- Are there any risk factors for CFS/ME?
Factors that may increase the risk of CFS include: Recent infection such as cold, flu, or stomach bug; Family history of CFS; Mental health illness—especially problems with stress, depression, or anxiety; Early abuse, trauma, or family problems
- Can CFS/ME be prevented?
CFS/ME cannot be prevented though when you have the illness you can better control the chances of flareups/ relapses by ....
1) Avoid overexertion. ...
2) Get your Zzzz's. ...
3) Soothe stress. ...
4) Zap illnesses in the bud. ...
5) Pencil in extra rest around special events. ...
6) Figure out your limits. ...
7) Adopt a reasonable schedule. ...
8) Boost your energy level with food.
Stay Strong and Keep Fighting!
-Joy <3
@JoyfulUnicorn i am pretty sure that i have ME (i have experienced constant (daily) fatigue for over 2 years now) but my doctors just keep telling me that i need to take vitamin D, or i just need to change my sleep schedule etc. Can you recommend how to get a diagnosis or go about trying to get them to take me seriously and investigate more? I do think that a vitamin D deficiency is part of it, but i've been taking vitaimin D for months and months now and there has been little to no change to my condition.
@WolfPrince
Honestly, i found thatbit was perserverance. I spent many years being turned away but once you have excluded thebother options then they need to look further. I would express your concern as they are the professiknals and there are places that you can be ferered to for an assessment. It is unfortunstely a really big struggle :( sending lots of beams and just keep your head uo. Youre Youre doing amazing and it is such a difficult challenge to try and be heard by doctors!
-Joy
@WolfPrince
It took me a year to get a diagnosis, but by then I'd stopped looking for a cure from mainstream medicine so I hadn't been to the doctors for 6 months. I went back with the sole intention of getting an official diagnosis so that I could apply for extra support from school and uni, and carry on with my life. I'd spent 6 months trying to get answers and being fobbed off, talked down to, and even having my family insulted by doctors, so I didn't have a huge amount of respect for them by then. I think it helped that I wasn't asking them to keep investigating, I got the impression they'd lost interest by then. It's a bit of a vague diagnosis anyway, so I think that also helped them sign off on something they don't really understand.
I suppose it helps to know what you're after and why. Having a diagnosis is useful because it opens doors in terms of getting other support. If there's a specialist unit in your area they can be helpful sometimes (there wasn't for me). But it sounds like your doctors are out of their depth on this one but maybe don't want to admit it (mine were like that). I agree that persistence is key. Good luck!
@Rosa9570 yeah, when i was starting my 'journey' (i guess you could call it) to getting diagnosed with my various medical conditions, i knew something was wrong but i wasnt sure what, i thought i had restless leg syndrome; i'd been told when i was growing up that it was just growing pain but after i stopped growing the pain didnt stop; i ended up eventually being diagnosed with cerebral palsy, so hopefully going in with a general idea of what i have and the symptoms i experience will help me get diagnosed
Hi Joy,
I was lucky to find this thread. I was recently diagnose with CFS and its really sucks, really really sucks.
I did backread your posts here. Are you still an active listener as I want to connect with you if possible?Thanks
@Fighting99
Hey, I'm not sure if the person who created the thread is still an active listener, but I have been through almost identical situations and was eventually diagnosed with fibromyalgia and ME/CFS and a couple of other things a few years later. I'm disabled, I've tried everything that can be prescribed and nothing was too helpful. I read that u were recently diagnosed, I'm really sorry, that sucks. I wish I could tell u it gets better but after 13 years, it doesn't appear that that's true. It's also confusing and there's soo many symptoms linked that it's impossible to list them. If u want to talk, I'll answer whatever questions u may have, just send me a message. Good luck
@LostTurtle2. Here is an older post with some info on CFS.
Some primary symptoms of CFS:
- Greatly lowered ability to do activities that were usual before the illness. This drop in activity level occurs along with fatigue and must last six months or longer. People with ME/CFS have fatigue that is very different from just being tired. The fatigue of ME/CFS:
- Can be severe.
- Is not a result of unusually difficult activity.
- Is not relieved by sleep or rest.
- Was not a problem before becoming ill (not life-long).
- Worsening of ME/CFS symptoms after physical or mental activity that would not have caused a problem before illness. This is known as post-exertional malaise (PEM). People with ME/CFS often describe this experience as a “crash,” “relapse,” or “collapse.” During PEM, any ME/CFS symptoms may get worse or first appear, including difficulty thinking, problems sleeping, sore throat, headaches, feeling dizzy, or severe tiredness. It may take days, weeks, or longer to recover from a crash. Sometimes patients may be house-bound or even completely bed-bound during crashes. People with ME/CFS may not be able to predict what will cause a crash or how long it will last. As examples:
- Attending a child’s school event may leave someone house-bound for a couple of days and not able to do needed tasks, like laundry.
- Shopping at the grocery store may cause a physical crash that requires a nap in the car before driving home or a call for a ride home.
- Taking a shower may leave someone with ME/CFS bed-bound and unable to do anything for days.
- Keeping up with work may lead to spending evenings and weekends recovering from the effort.
@adventurousBranch3786
Thanks for this reminder, I try and ignore the ME diagnosis I have, but sometimes it is good to get a reminder. So many people are unkind and say we are shirking or just lazy, but I know what I was before I got glandular fever and I know what I am now. And I am not lazy!
thaNKS AGAIN :)
@CocoaCassie. Your welcome, it’s unfortunate that this illness is so misunderstood.
@JoyfulUnicorn Thank you for sharing this. Its a very helpful post. I, too, struggle with chronic fatigue and it's incredibly difficult
@JoyfulUnicorn
I love this, I was diagnosed with it as well as fibromyalgia at 24-ish, I'm 36 now and it's only gotten worse, which I expected.
Edited March 25, 2023
@JoyfulUnicorn
Sadly, it seems like it took a global pandemic for it to finally get the attention we need it to have had forever ago... Long covid is suspected to be the same thing or simply enough that it's being researched finally
@K87 I thought long covid has respiratory symptoms and is complete body, and ME doesn't.
@K87
I could not agree more. It has taken this horrific pandemic to highlight a condition that has been debilitating people for many years. It took 5 years for me to get a diagnosis of ME and then a further 5 years for anyone to believe the constant pain that i am in. The specialist, when i finally got sent to the hospital, diagnosed fibromyalgia. But i had to fight constantly to get taken seriously. Especially with a history of depression, that was seen as the culprit to my physical ailments. But i knew that there was much more than that going on. I spent years telling my doctor that i was in pain and she would say, where is the pain ? And when i replied that it was everywhere, even in the roots of my hair, she would look at me with such a look of incredulous disbelief. Finally i think that i wore her down and she sent me to the hospital. Where the specialist had no qualms about the diagnosis of fibromyalgia. To finally be believed means everything. Although we still have a very long way to go to get both ME and fibromyalgia fully understood and de-stigmatised. My heart truly goes out to all who are suffering in such a way and i send gentle hugs xxx
@sooty41
I went through the same thing, I had a doctor who didn't believe fibromyalgia was real and refused to treat it, my psychiatrist (they were in the same building) treated it until I could swith doctors
@K87
It is shocking how stigmatised and misunderstood both CFS and fibromyalgia still are. I am relieved that you eventually got a diagnosis. As prior to my diagnosis i was told by the mh professionals that it was all in my head. And finally for a consultant to believe me was so validating. Just to know that the pain is real and believed. Look after yourself and all the best for the future. xx
@sooty41. @K87 The stigma and lack of knowledge by the medical community (and others) make things very difficult for people with these illnesses.It took me 10 years to get a diagnosis after being told that it was all in my head too. There are some studies happening for these illnesses. So fingers crossed 🤞 for some helpful discoveries.
@adventurousBranch3786
I'm sorry that it took you so long to get a diagnosis. Yes ! I'm taking part in a genetic study, so hopefully things will be so much better for those coming after us.
Take care and sending positivity and gentle hugs xxx