Any light to shed on CFS diagnosis?

Dear Anna, I am sorry to say is does look as if you have come to the right place. Many have stated that their GP diagnosed deoression when it has been CFS/ME. They also found that antidepressants were very unhealpful. I suggest you have a good browse, if you have the energy. You will , I expect, find much that that you recognise. You will also get some idea how to set out on the road to recovery.

I wish you well. Inexpect you will com across my testemony of inappropriate treatment and road to recovery. I hope you find that helpful.

So here are the major symptoms of ME/CFS: deep fatigue, postexertional malaise (in other words, unusual fatigue after doing any tasks or exercise), orthostatic intolerance, and brain fog (difficulty concentration, memory problems, etc.) Many other symptoms are possible. If you've had bloodwork done that's normal, and these symptoms resonate with you, you may have the ilness. See an ME/CFS specialist, preferably, an infectious disease doctor. Best of luck.

Sorry to hear you're suffering, Anna. A couple of things you mentioned stand out.  Firstly, antidepressants don't work on cfs (unless you are depressed as well).  You are clearly motivated to find help and answers and bound to feel anxious as a consequence of uncertainty.  There are depression scales on the internet if you wanted to test yourself.  Often used is the Hospital Anxiety and Depression Scale (HADS score).  My doctor didn't consider depression as I said i wanted to complete an evening class which showed I was looking toward the future.  Also,  I find that those who have not experienced any trauma in their lives (all GPs then) usually think trauma influences every moment of your life and cannot be overcome.  I had a traumatic/abusive childhood.  It has caused problems and influenced my life until I paid for private psychotherapy (not counselling or CBT as I'm not convinced they cause long term change. I had transactional analysis which took my thoughts apart and re built them, a small price to pay to change my life).  Incidentally, my thereapist said she doesn't believe in depression but it's actually an unmet need!  That changed my thinking.  If you think you are depressed, it's out of your control.  Or you can ask yourself if you have an unmet need and try to address it.  Is communicating on here helping.  My other point is that among cfs suffers, there is a higher proportion of people who have suffered trauma/abuse and are high achievers.   For me, I think the relationship is that I studied and worked so hard to achieve and get away from my background that i didn't know when to stop and overworked until i couln't stay awake and was diagnosed with cfs.  Needless to say, I've made a lot of changes to my lifestyle!

I'd be interested to know if you have a very sedendary lifestyle now and if you have maintained or lost your muscle bulk?

Best wishes

Hi Anna:  this is prob ?the 1st time that I have actually written anything re my post exertion fatigue...but today it has REALLY reminded me re what we all talk about:  as my eldest daughter is away,I said "we" would go and feed animals etc over the Easter Break, while her neighbours are away....wham...this small task of driving there (15 minute drive), feed the animals and have a talk/play with them, went to supermarket and bought a few groceries, and drove home again...and gues what...I feel sooooo weak...that's what I call "post exertional fatigue"...absolutely unbelievable, and yep, had the sleep too....Bron

Hi anna, (plus tired-physio & bronwyn)

Sorry to hear of your difficulties.  It is very much a battle trying to get a diagnosis for CFS/ME and so much more when you are just too tired to keep on returning again and again to the doctor's surgery but be persistant. I had to TELL the doctor I wanted referring to a specialist but this was not before years of being fobbed off.

However, there does seem to be a connection with ME and trauma.  I have read some interesting material around the effects that accident/trauma/abuse can have on the human spirit which in turn can cause, amoung other effects, ME/CFS.  Your doctor is picking up on this but linking it directly to the depression and no further.  Often there are several layers to get through before you find the 'blight in the onion'. The depression is just one of the out-workings.  I recently was sent on an ME/CFS group educational session and here, there was also recognition that trauma can be a trigger.

Further to the point of unmet need; I so identify with what bronwyn and tird-physio replied about this. Just prior to becoming ill myself I had been under enormous pressure and feeling unsupported. It just felt like my bones were being pecked dry and I had no more energy left to give out to anyone or anything.

Good luck anna with your diagnosis.

Hi Bronwyn & Anna,

I'm glad my words helped.  I agree that there tends to be a lack of support or it's well meant but not helpful especially if it hinges on 'doing something' rather than time out or taking stock of a situation, or just listening.  After any loss or bereavement you don't need any other pressures, you just need acceptance for you and how you feel.  I had a few events close together prior to my diagnosis (lost my father, miscarriage and hospitalised with a mysterious fever) after which my partner wasn't helpful.  Despite expressing my needs clearly ie" I'm really tired, I'm going to ly in until midday on sunday" (not complicated!) he couldn't help me (I realised he needed to be busy to deal with his anxieties) so I decided to help myself.  I warned him that I would not allow him to bring his stress into my life, he continued to do so, and eventually I ended the relationship.  My life is peaceful (without him nagging) and I feel quite happy as I can do as much or little as I can manage.  Men (bless 'em) always put time aside for themselves be it for football, golf etc so we need to do the same.  Also, I don't think you are depressed, if you were, you wouldn't be bothered to read this page let alone contribute to it.  Remember, there are huge international companies pushing those drugs.  They do help some people but  we can't all be depressed surely?  Plus, emotions are there for a reason, they warn us that something is either doing us good or not doing us any good.

Best Wishes

Hi Bronwyn,

You are right in that we have had similar stressors.  I worked to hard and didn't take care of myself because 1. I didn't know how to, 2. I thought I could wait until later when I had finished xyz, and 3. I didn't realise the human body had limitations.  Daft really since old people arn't jumping about and sleep deprivation and hard labour are forms of torture.  High levels of stress hormones, whatever there cause still take their toll. I still mis-judge my ability sometimes though but I do plan rest days into my weekend.  I've changed all sorts of things to make life easier but it must have taken 18 months to 2 years to come to terms with cfs.  I changed my job because I was working with people who were always training for fun runs and marathons for charity - that was really doing my head in!  I also changed my hair colour from blonde to brunette, it almost signifies the change in my life!  

Anyway, have you listened to Glen Harrold? He is a hynotherapist and I used his CDs when i was sleeping badly  and quite stressed.  He has a huge catologue now and I thought I might treat myself to one from the solfaggio scale.  Certain frequencies are supposed to be quite healing but whether you buy into that or not, it's lying down for 25mins while a nice man plays music and talks to you which is 25 mins away from day to day stresses.  some sounds are a bit odd but I found the sound of the didgereedoo quite calming.  He's also a very genuine guy, overcome dropping out of school, drug addiction and homelessness, so he's not patronising.  google him and see what you think.  It's not a bad substitute for someone supporting you without bad advice!

Best Wishes

Hi Bronwyn,

that sounds like a very busy event but sometimes family or friends get togethers are worth the effort and payback.  you just can't do them too often.  I'm exhausted today too so I'll have an early night.  I hope to get the second one on the solfaggio scale, with the yellow cover.  

Take Care

x

I must sound like a broken record , you don't say what tests you have had Anna ? I must repeat thyroid disease is the most misdiagnosed illness. Just because blood tests come back normal does.  not always mean you haven't got a thyroid problem ! I would say to you talk to your GP ask for antibodies tests as well as the usual TSH T4T3 . And if you feel brave enough ask for a trial of thyroxine perhaps the lowest dose 25 mg s . Many years ago  there were no  blood tests and doctors diagnosed by symptoms and you were given thyroid hormone  . if you research thyroid and treatments you will see a low dose of thyroxine is not dangerous and cheap to prescribe no drain on the NHS. This would be a starting point. I was told " oh your just depressed it's all in your head there's nothing wrong with your thyroid the blood tests prove it" hmm!!!! I was eventually told I had CFS but as it turned out I have an autoimmune disease that attacks the thyroid. Causing hypothyroidism . I eventually found a doctor who went by the symptoms and prescribed thyroxine he could not understand why I had not been given this as a trial . I hope this gives you room for thought , it may turn out you have CFS but what have you got to lose or should I say what have you got to gain!!!! Best wishes sy