Myalgic Encephalomyelitis Community

It's NOT always,"just anxiety "!

I think most people who read this, will agree that your symptoms are not always "anxiety", just because a physician states that. I am going through that type of situation right now and think that label makes me anxious as well as effects my physical health. I have had health problems since I was born and now I am bedridden and hopeless. I am falling apart at a much faster rate than I ever expected. I have so many symptoms, rare conditions, undiagnosed conditions and I have a doctor who doesn't believe me or want to invest his time. I am only 40 and should be out having fun, not living in bed, so sick that I think I am going to die. No person or patient should ever feel this way. To me, it seems cruel to leave someone this sick and not do anything to help. I am lost at this point and scared to death that something will happen to me. As far as the "anxiety" label?? It makes me so sick to even hear the term!! Yes, I'm anxious! ! I am sick, my doctor is an asshole and thinks I must love feeling like shit and love to make things up so I can go spend countless hours in the er to get no answers and have the er doctor say I just have anxiety!!! Lol! NOT!! I would rather be out having fun, playing in the sun, traveling, having a relationship, move out of my dad's house and be able to take care of myself. I don't know what person would make up being sick. Being ill will make any sick person have anxiety as well as having a doctor neglect you and think your a lier. Being this sick with many things going on at once, and not knowing why your health is declining is causing severe anxiety. I am very lost and hopeless at this point and I'm so sick of begging for help. It's bullshit and I hope I'm wrong about my feeling of what is going to happen.

19 Replies

I know exactly where you are coming from ...and I supose so do many others.

If yr ill, it breeds fear, and fear brings anxiety. Of course you are worried ....worried because you are ill....that came first. There's nothing wrong with bring anxious or depressed ...another label I've been given, but let's treat what was wrong in the first place instead of giving someone a llabel and then patting them on the head and sitting the, in a corner . Thankfully I have had help. To recognise what I'm ill with and to recognise the physical symptoms of anxiety, and how to learn to control them. I had impending fears of doom, that I wouldn't wake up in the morning. Can you change your Dr. They don't sound very sympathetic? I had CBT with an ME group it helped me to recognise my symptoms and gave me tools to deal with them. Thankfully my G P is helpful, he once said to me when i felt like I'd never been away from the doctors .....keep coming it's my job to find out why you feel ill.

It's so defeating when you feel that no one understands you and you're being ignored. and when you gp feel so physically ill it's very difficult to fight your corner. I wish you the best, good luck and dont let the ************ get you down


You really did help me:)) It's so nice to know that there are others who know what I'm talking about. My situation is really really bad! Once your locked in a " psyciatric box "? I think your SOL. I am so hopeless and sick at this point that I can't even start over with a different doctor. I'm trying to be positive but this has to be that bad for me to give up. I refuse to go to the er ever again. I can't fight and beg anymore. My body will give out at some point at this rate. I know that my symptoms feed anxiety but I also know when something is not caused by anxiety. I'm just waiting for a letter in the mail from my doctor dismissing me as a patient.. Am I suppose to go see a counselor about my vomiting, kidney stones, kidney pain, cough, etc?? I don't know what to do..


Stay strong, you are the most knowledgeable person about you . You know we all support you I hope you get some sort of breakthrough. You sound like you are at your wits end . Sending positive vibes, and If it's not too personal a hug as well

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I was very anxious about the things you describe for the first six months and went to 'sleep' (not much of it) fearful I wouldn't wake up. I am lucky and my partner had this hideous illness for 16 years before I met her (and recovered) so i knew what it was early on (although I'm sure some would say that's what made me think I had m.e!!) but i got rid of the anxiety about being ill by using Amygdala retraining. It didn't cure me, but it helped me calm my nervous system down enough to start getting out of bed more often. Then I was left with the physical anxiety of having low cortisol and I have even been told by other people with m.e that some of my symptoms are anxiety and that makes me cross because I don't have anxious thoughts, just the body feeling like its strung on a massive taught wire that get jangled by the smallest thing!

Anyway, what tests have you had? Have you paid for a saliva stress test? Have you had a mitochondria test. Have you had thyroid tested and do you have a print out of the result rather than believing their 'normal' response. You need all if these. I have worked my way through every possible approach from Sarah Myhill to chinese herbs - the herbs, acupuncture and homeopathy made me worse. I am now trying Optimum Health, but the dietician ( i know for some people pyschology and personality means thay don't do themselves any favours and keep on pushing, but I ain't one of them. My partner fits the steroptype but I don't). I have to say I wish I'd gone to them in the first place, expensive yes, but despite having had mitochondria testes by Myhill this dietician is actually giving me a proper undertstanding of what is going on to stop my energy production and I feel she has many things to try before we give up. It would have been cheaper to just seem them four years ago!

Anyway first things first, for crying out loud change that GP, change within or just change practices!! I have done both to great effect. My first lovely GP changed personality when I got m.e and I found a truly undertsanding one in the surgery - just try them all - and then we moved to wales and the practice were s**t and I changed practice last nov and at least have a sympathetic one who isn't threatened by an intelligent self resreacher! Start any converstaion with a new one with 'What';s your undertsnading of M.E?' and if they come out with urr or anything worse don't waste your energy talking to them, they obviously think it's pyschosamtic.

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I've had alot of tests in the past and just the normal tests that drs do. This dr refuses to run any tests!!! He ran a carboxyhemaglobin and it came back high. I don't even smoke!! He did nothing about it. I have given up now. I'm just scared that something will happen before they believe me. I acually feel it!!! Thank you so much for being supportive. That's means the world to me right now. I wish there was something I could do but I cant. It's their thoughts and words against mine. I know in my gut that whatever caused my skin disease, is what's causing this. I have mid dermal elastylosis. I started having the skin symptoms when the pots symptoms began at age 28.


A genetic dr thought I had a mito or mast cell disorder but my doctor wouldn't listen to him and refer me. I've been sick since I was about 3. In the er every week with stomach pain and cyclical vomiting syndrome, admissions to the hospital, rare viruses at 10 from our birds and now, things have just compiled over my 40 years. I've never been this hopeless in my life. Right now, being hopeless will not be good and giving up when things have now become this bad will be even worse.


There was an article in the Mail on Sunday's You magazine about a lady with Mastocytosis or mast cell activation disorder - is that what a genetic doctor thought you had? You can ask to be referred to an Immunologist and don't take no for an answer - or pay, if you can, to see one privately. This lady did a number of things to improve her condition - her name is Daisy Honeybunn if you wish to google her and what she said in the magazine.

Doctors tend to label someone mentally ill if they don't know!



Really? Yes, a genetic specialist was pretty sure I had that. I will ask to see an immunology specialist for sure! I know my dr will say no and to seek mental help:(


Google the article - perhaps you could take it in to your doctors. What about the report the genetic doctor did for you - surely you can get a copy and pursue that? Could you see the genetic doctor again? This person (Daisy in the article in the You magazine) found that it took ages to get a diagnosis. Don't give up.



Hi Karen. I didn't get to see the genetic dr. I just got him my records and told him all my symptoms. He was pretty sure I had either mast cell activation or a mito disorder. I couldn't afford to get the tests. I had a phone appt with my dr today and he never called me. This will be the 4th time he hasn't called for my phone appt. I want to give up. I don't think there is anything I can do at this point and asking my dr for anything will just be refused. I'm so upset and scared. Feel ugly also because I'm so swollen for some reason. Probably just anxiety. .lol; ((((


Why do you have to pay to have tests done? Can you change doctors? There is a support group in the US (I think) for Mast Cell Activation or Mito disorders. Can you get advice from them? Just some ideas. You are not getting the help you need from your doctor - but then you know that already. Can you ask your doctor (if you can get in to see him/her) why they think it ISN'T Mast Cell Activation or Mito disorder? Just some thoughts.



Just looking through my medical notes the GP supplied for private consultation - he believes there is a certain amount of Somatization - yup its all down to me being anxious!! That is despite no previous history, I have no family/work/social issues and I have only become anxious about loosing my job because I have been so unwell!!

F**K me but to have someone who hasn't a clue label you in that way is frustrating - ihatedrs40 I feel your frustration the only upside is you are talking with a community that knows - a GP doesn't!

I have gone begging for help - I have gone with a list of healthy things I have been doing only for the Dr to tell me to stop! What am I meant to do lie down and give up so I can be declared depressed as well?

Stick by your guns and if they mention anxiety depression demand that they acknowledge that it is secondary to a life destroying condition.

I know from my experience in the health field that when they label you with a psychiatric disorder you fall to a second class service and EVERY ailment is filtered through the thought that it is a physical symptom of a mental disorder.

Although I will say after extensive tests on a family member for vomiting and headaches it turned out to be a grief response that was cured after talking. It goes to show how both things are so interlinked and for a GP to separate the two is shoddy halfarsed doctoring in my opinion.

You are not alone here and your suffering will be heard and understood

Good luck.

P.S. I had written a reply to another post but I lost it and can't remember what I wrote but keep your spirits up and don't give up!

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Hi Raffs! Isn't it bullshit? Yes, second rate service also. You get what you pay for and if you have more than one symptom? Good luck if those symptoms aren't putting money in your doctor's wallet. You almost have to pay them to give a shit. I'm trying to keep this up but I really can't and now I'm to sick to even fight or stand up for myself. I'm scared..


MY Drs approach on the CFS things is don't be depressed and your doing fine! That's easy for him to say as he sits at his job earning plenty and can run out to the golf course and do whatever he sees fit with his family while I sit and stew!

There is a lot of information out there (and is often dubbed 'conspiracy' ) about how Drs make money out of keeping people on the cusp of good health and I am beginning to believe it.

They know little other than to push drugs, some of which are poisonous to the body and mind, to mask the symptoms of the illness. I'm pretty disappointed in my man as I really thought he had listened to me and if he had he would know that any low mood or anxiety is following this condition whatever I have, (yet to get a proper diagnosis).

Have you tried any of the 'alternate/complementary' approaches Reiki, Bio-Aura, etc? I have a mate whose into that and he says since CFS is an energy problem maybe an energy solution is required. Worth a thought.

Good luck.


I have tried everything and I'm so hopeless now. Never believe you have CFS or fibro!!!! Their both bucket disease and and they give that diagnosis at an" anxiety" alternitive. It's bullshit. It's their way of saying it's all in your head and don't want to make the effort in their patients.


Seen Dr Weir he maintains it is a viral infection and that with the developments they are getting it shouldn't be long before it is identified!

He did bang on a bit about anxiety, ( I am to meditate twice a day) but in the context of an illness so I didn't feel I was being fobbed off. He says if found early and the correct steps taken, (Gluten/Dairy free - big dose of Vit D followed by maintenance dose, Omega 3, Pacing and something else that escapes me now).

For me anyway the prognosis he said was good but had I left things and not started doing all I was doing, (most of what he recommended actually), and it goes on too long then it becomes very difficult to recover, (Difficult not impossible).

He went for an ME diagnosis as he doesn't like the CFS label as it is much more than that.

I know for me there was a dark period with this but that was secondary to this bloody condition. The Dr understood that and didn't say I needed an anti depressant.

My impression is the environment and diet play a huge role in this, (and the more I see about diet the more I think the majority of illness conditions are down to this - you can be depressed due to low Vit D you may only need a supplement or change in diet as opposed to an anti-depressant).

I wish my Dr had a tenth of the understanding Dr Weir had :(

Keep your chin up ihatedrs40 look at the diet see if eating an organic diet minus processed foods and lots of sugar. Cut out hte dairy adn wheat and even if you don't get an improvement in functioning you will be improving the health of your body and mind and not succumbing to the pesticides and toxins in a lot of our foods, (sugar, E numbers, Gluten, sweeteners, etc).

Good luck.


Thanks Raffs :) I did start eating better and have always ate pretty healthy for the most part. I've lost 10 pds in the past week and don't know why. I didn't need this to happen. I'm only 110 now. I don't know what is wrong but do know something more serious is going on. My Dr doesn't believe me.


Now I don't want us to fall out.... so fingers crossed I convey what I am trying to here:

We all know that ME is a terrible condition which severely limits or destroys life. There MUST be damage to the psyche and yes I am looking at a mental health reaction to illness.

First of all this is secondary to the condition - I have experienced lots of anxiety and low mood since this started. The difficulty here is that this makes everything worse.

Unfortunately lazy pathetic phone it in Drs will take their usual "I can't be arsed with this prat as I am not too sure what's going on and how to treat it" approach - see the psychiatric trauma caused by the illness and look no further for an explanation.

What we need to realise that this horrible illness is legitimate, (well it would be legitimate if a mental health condition too), physical complaint that damages and distorts all systems in the body.

For me I went through a couple of very difficult months worrying about being able to be a father as I couldn't do anything with the kids, would I get back to work and would I ever feel normal, (what ever that is now). As I got my head around things started meditating again the anxiety that was making things worse has eased.

I'm still very unwell but at least my head isn't making things worse. Ihatedrs40 if you can get some of the meditative practices they may help until you can see a decent Dr.

My friend sent me a link to compare CFS and ME which highlights the severity of the condition:

AS I was told:

* Big dose of Vit D for 10 days then regular maintenance dose, ME sufferers are more likely to be deficient in Vit D which can make things worse:

Note that lack of one Vitamin can help cause cancer so in our 'deranged' bodies what all is the deficiency of a number of minerals and elements doing?

*Omega 3 oils lack of which can have very negative impacts on mood, (which in turn effects the body - our minds and bodies should be treated as a dual system not singularly as they are), which is already compromised by ME:

*Pacing - his description was I had a gallon of petrol and I either conserved it and got to where I was going or I used it willy-nilly and went nowhere!

*Meditation for 20 mins twice a day - the Dr used Transcendental meditation himself to deal with the stresses and strains of life:

*Gluten and dairy free - this will help with the aches and pains, (after TWO DAYS on this diet my IBS that I had for years was gone and a lot of the joint pain was gone). What we put into our bodies is so important - I have a link somewhere to an article that says they think now that RLS is caused by inflammation - well Gluten causes inflammation! There is so much out there about the need to eat a proper diet I was over-whelmed with links so I will leave that for yourselves to look up.

*Probiotics – need to replace the bad organisms with good organisms in the bowels should help with IBS symptoms and more:

So from what the leading expert in the UK appears to think this is a viral illness which he believes wont remain a mystery for too much longer which causes a mess to our body and minds and as such we need to treat the two together, (as is right and proper imho).

From my brief experience with the Gluten/Dairy free diet I have come to realise the immense impact of diet non health and the need to completely re-evaluate what I put into my body.

Hope this has been of help.

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I agree it isn't just anxiety.

This illness makes you much more anxious and no wonder you are with the GP you have. Anxiety is only a small part of the barrel full of symptoms.

I think you should try to find some form of therapy to help with your anxiety, It will make a difference..

Hope you find a better GP


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