Posted , 10 users are following.
Been complaining for years about being extremely tired but because I have a history of depression thurs just keep telling me it's my depression here's some anti depressants and send me to counceling.
1 like, 11 replies
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knackered.com xtinamicha
Posted
I'm sorry your struggling to find an answer. I was in your position when last July I went private to gain a diagnosis one way or the other. Unfortunately it's a bit of an anti climax as its a relief to finally get an answer but a downer to realise you have something that is incurable. I knew that I wasn't depressed (as under control with meds) and it was a different tired. I was fortunate that I could afford a private diagnosis although couldn't afford any follow up "treatment". I would strongly recommend trying the other doctors in the practice and failing that change practices. With regards to "treatment" the best advice I can offer is to reduce stress and "pace" your life. The one thing that sets aside ME 'tired' with other 'tired' is the pay back. When your able to do an activity but feel the extra tiredness a day or two later. There are NICE guidelines for diagnosis and who should be considered for ME diagnosis. Just google it and print it off and take it to a different doctor to put over your case. I hope this has helped in some way. Take care x
xtinamicha knackered.com
Posted
Thx..during my years of fatigue brain fog forgetfulness depression. I was convinced that my ADD that wasn't being treated and my mind and body was worn out. Dr's would not give me meds even for add. they made me do the test for add so they just sent me to therapy and gave me antidepressants and also believed I was just fishing for meds. I finally got new insurance and a new dr. She just said I was worn out and need to find a hobby exercise and gave me a refill on my meds. Said follow up to review labs. I finally asked to see a psychiatrist. So I saw a psychologist she said I had cfs not add and I see a psychiatrist soon but not soon enough. Thx for ur reply
olivetree xtinamicha
Posted
Oh I replied and then after posting I saw this new post. A psychiatrist will not be able to do anything much for CFS/ME. it is no longer believed to be an illness of the mind but the fairly limited research points to certain 'triggers' such as infection eg. flu or glandular fever. Another theory is stuff like accident, trauma, extreme stress. I think it could be either of these things or perhaps even a specific mix. I don't know what comparable services are available outside UK to support ME sufferers.
beth14424 knackered.com
Posted
Hi there. Where did u go to get a private diagnosis? I'm really struggling to get properly diagnosed even though I know I Def have cfs. I tried to look up going private but heard u couldn't get a private diagnosis.
olivetree xtinamicha
Posted
Hi Xtinamicha.
I presume you have done plenty of research into your symptoms and come to the conclusion of CFS yourself as CFS/ME comes with a whole host of other unpleasant symptoms besides the crushing fatigue and you would be able to identify with much or most of it. I also presume also that your doctor has done a whole host of blood tests and possibly exrays, scans or other exploirtory procedures and come up with a blank? So their brilliant conclusion is there is nothing 'wrong' so it must be depression.
When I became ill with this that was my experience too. It took almost 9 years to get a doctor to refer me to a specialist CFS service and I had to be quite assertive! I TOLD them that's what I wanted them to do. I saw several different doctors within the practice but I think they just read the notes and go along with whatever the previous doctor(s) concluded. The CFS service I eventually got to see were in no doubt of my diagnoses. (I am in UK). I have resisted and then given in to, doctors assurance that anti depressants would help and they so did not! I have tried different ones but they seem to exacebate my symptoms. Now i refuse to take them for the sake of it and would only consider them again should I get in a depressed state.
I know how hard it is to keep returning to the doctor when you feel exhausted as it's just more exhaustion and they don't help but go back and insist on a referral to a specialist. Make a list of all your other symptoms or you could print off something from action for ME or similar organisation with a list of symptoms that you could tick off.
I had hoped that once i had a diagnosis there would be be more help but found the help limited and there is no known cure although they can offer advice on how adjustments to your lifestyle and pacing activity can help ease things. Saying that, it was a relief to get a formal diagnosis when for years you've been failing to get someone to take you seriously.
Wishing you well.
jackie00198 xtinamicha
Posted
I would say almost everyone has trouble getting diagnosed with ME/CFS. I suggest you go to a reputable website, print out symptoms for ME/CFS, and show them to your doctor. The NIH (National Institutes of Health) is such a website, as the NIH is a government entity here in the States. Also, it's best to see a specialist, like a rheumatologist or infections disease doctor. GP's tend to be very poorly informed about this illness. Unfortunately, we have to learn to advocate for ourselves in the face of ignorance of the medical community.
cherie8218 xtinamicha
Posted
I'm still in the process of getting diagnosed. Like you I was told I was depressed and sent on my way. I knew that wasn't the case so it went back seeing another doc and being very assertive. .I have a big mouth.. they sent me to my psychiciratist who tried to help but she ended up sending me to a neurologist.
They are working with me. They have given me stimulants to try. I'm still in that process now. You really have to be your own advocate. Tell them what you feel and be assertive. . If I would just let them say whatever i would still be nowhere with no diagnose. You have the right to be referred somewhere, for me it's the neuro. Good luck in hope this was helpful!
xtinamicha cherie8218
Posted
Thx...I've tried the assertive approach with regular drs. Saw some good psychologist that believe I have cfs. See the psychiatrist tomorrow. Hopefully he reads their notes and helps...I just don't have the energy, time, strength and money to get another referral.
millie88144 xtinamicha
Posted
Hi, new to this site but thought I could share my story with you...I have had so many symptoms of CFS for so many years and never really knew. I know that sounds strange! However, last July I began to feel really low and very sad. I knew I was on the verge of a depressive episode because I had experienced the same feelings in the early 90, the trouble this time was I had really bad headaches, stomach pain (I have IBS anyway) muscle aches, joint pain....I'm sure I don't need to carry on too much about that. Anyway it took from July last year until April this year before my GP said she believed I may suffer from CFS. She asked for time to read my records and she would call be at home....she did, the very next day, and that was the start of my merry-go-round of tests, tests and more tests. In May this year she arranged for me to see an infectious disease consultant who specialises in CFS, during the time I was with her she told me she was 99.9% sure I suffered from CFS. The only things remaining to check were an x-ray suggested I had an enlarged heart and that had to be ruled out and sleep apnoea. I have now completed all tests possible and am awaiting correspondence from my consultant. She said that she will provide a written diagnosis. Just knowing that I'm not imagining symptoms and that what I have gone through for so long added up to an illness not a mental illness is just such a relief. Yes I suffer from depression and anxiety but the CFS is real, not in my head....sorry to have gone on a bit...just trying to give you hope. Good luck!
jackie00198 millie88144
Posted
Just wanted to jump in here. It's great that you were referred to an infectious disease doctor specializing in ME/CFS. For anyone on this forum who is not yet diagnosed but suspects ME/CFS, that is exactly the appropriate doctor to see. A huge amount of hassle, dead ends, and dismissive treatment can many times be avoided by seeing this type of doctor. Sometimes a rheumatologist with a knowledge of ME/CFS may also be ok.
sicksals xtinamicha
Posted
for over three years symptom after symptom including doing hoovering and waking up on floor! but it ok all my blood test come back fine so i must be fine too!!!!!. sorry if am ranting but get a doctor that belives and listerns and helps, mine does not so i do not see him!.