ME/CFS misdiagnosed as FM?

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Hi everyone, my name is Siena, I'm a teenage girl living in Australia who has also been coping with ME/CFS symptoms for over a year now. I have had a history of iron deficiency that was treated with infusions, however, this didn't seem to fix my ongoing fatigue, pain cognitive problems. Recently, my symptoms have flared up, and have rendered me unable to walk due to extreme weakness and some pain, especially in my upper legs. At the moment, if I can manage to walk, my legs shake uncontrollably - almost as if my body is screaming at me to sit or lay down. 

Not long ago, my rheumatologist diagnosed me with fibromyalgia, after a long line of doctors telling me that I am perfectly healthy, or that this is "all in my head". Although it was relieving to hear someone say that they know what is happening, I have come to realise that I fit the criteria of ME/CFS more-so than fibromyalgia. I understand that it is possible to have both, but I have not received a diagnosis that explains everything that I experience. This diagnosis is important to me, since it will help me self-manage my symptoms and (hopefully) allow me to return to my active lifestyle in time.

For reference, here is a list of my symptoms:

- neurological impairment; including problems with short-term memory, difficulty with concentration, disorientation, slow/slurred speech, brain fog, sensitivity to light and sound, tinnitus, problems with vision

- pain; including chronic headaches with eye pain, general muscle pain (worse in specific places), joint pain, chest pain, shortness of breath, numbness, pins and needles

- sleep disturbance; including unrefreshing sleep, prolonged sleep with naps, ever-present fatigue not alleviated by rest

- motor disturbance; including profound muscle weakness, spasms/twitching in muscles, poor coordination, unsteady on feet, orthostatic intolerance, lightheadedness, dizziness, problems with balance

- immune and gastrointestinal impairment; including flu-like symptoms (recurrent sore throat, tender lymph nodes, chronic cough), nausea, abdominal pain, bloating, IBS

- loss of thermostatic ability; including poor temperature regulation, poor circulation, sweating episodes, recurrent feelings of feverishness

I have been through an extensive amount of blood work, including diagnostic tests for any related conditions, with every test coming back negative. My symptoms definitely are exacerbated with increased activity or exertion, which is difficult to manage when you're trying to graduate from high school and continue to be involved with your friends and family. As a result, I have been forced to stop, or put on hold, many things that I love to do, which has not been easy.

If you have any advice or thoughts, please let me know - any help would be much appreciated. Does this seem like ME/CFS? What should I do next? Thank you in advance!

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13 Replies

  • Posted

    Hey Siena,

    First off, we have something in common - I also live in Australia and am a girl not much older than you!

    This sounds exactly like CFS and very similar to my own symptoms. I recommend taking your list of symptoms to a doctor with knowledge of CFS (there aren't many of those in AU, but the one who diagnosed me seems quite good, if you'd like their name please send me a private message as I'm not sure I'm allowed to post it publicly). Bring along all the negative results from your past tests if possible. If you can show that there's nothing else wrong and your symptoms worsen with exertion, a CFS specialist should be able to make the connection pretty quickly.

    Something you may want to look into is your blood pressure - up until I visited the CFS specialist who gave me my diagnosis, every doctor had told me my blood pressure was normal, but the specialist told me it was actually a bit low...which is apparently common in young women with CFS! I find that salty and high-carb snacks help me keep my energy levels up, but these are generally considered unhealthy foods so that's not a recommendation haha - it's just what works for me.

    I'm so sorry you're battling with this horrible illness. It can be so disheartening. I hope you are able to get the correct diagnosis and find strategies to manage smile

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  • Posted

    Hello Siena , so sorry to hear you are dealing with this sweetheart , I am in Australia too, near Brisbane. It does sound alot like cfs , and at first it can be so debilatting ,but I believe we can get better! You have youth on your side which is a great thing ,, but you must learn to pace yourself ,, not too much activity ,not too little. I am 50yrs old and mine occured after a virus in March 2015, quite likely glandular fever, i was bedridden and fatigued very badly for 2 years , i am in my 4th year now ,and slowly slowly getting there, Best thing that helped me stand longer was drinking SOLE a salty mixture ,, you can google how to make it , I like using celtic sea salt , and magnesium oil ,,spraying that on my legs, i still cant do that much but when i think of how far i have come i get excited that i will be fully recovered one day. I can walk like a normal person now , do some shopping and light stretching, instead of wheel chairs and scooters, but its up and down, stress is important to avoid ,but we still need things that  give us purpose.. Its hard to get others to understand what your experiencing ,even hard for us to get, so counselling might help, There is lots of good info on here , Wishing you Wellness <3 Guava, ive seen a fair few doctors but none seem to be able to help, I also think mine is spiritual in way ,teaching me to know myself. <3 There is a Aus website called Emerge also.

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  • Posted

    Hi Siena. Sorry to hear you are enduring all this.

    You certainly do have many symptoms of ME/CFS.

    I have had ME for going on 22yrs now. I also have FM. The thing is the two often overlap and many people have both . well that is so in the UK. In addition some doctors etc think it is all the same illness as the symptoms can be identical for many. To go a step further , there is a variety of fatiguing conditions that all come under the same umbrella. Sometimes, if not often making a clear diagnosis difficult and ambiguous. Even the names are argued over. Many people who were diagnosed with ME refuse to believe it is the same as the more recent name chronic fatigue syndrome. Feeling CFS lessens this devastating disease. Personally I am not that bothered despite my ME diagnosis. I wouldn't get too stressed with the names including FM. Self management is the same.

    I hope you will eventually start to feel a bit better and improve. Main thing is to not stress yourself . try to retain some positivity. This disease is devastating and takes everything from you. Including self esteem .it might sound selfish but you are the most important person in your life. Only you know how you feel. Nothing wrong being a bit selfish . or as I prefer to call it , self preservation. Patience is the key. There is no overnight improvement. It all takes time. Everyone is unique and what helps one person may not help another. Good to try some things just so long as they are safe and won't make you even worse. Take care x

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    • Posted

      Thank you for your lovely message, Janet. I agree that it is unfair to call this illness 'chronic fatigue syndrome', since it goes far more deeper than what the name suggests. Sometimes it is hard to avoid and difficult to remain calm when you can feel your body almost shutting down and not being sure of why, but you are right - maintaining patience and positivity is very important.

      Thank you again for your knowledge and advice! Best wishes.

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    • Posted

      Awe my pleasure sweetheart. I wasn't sure how it would read. My head was quite muzzy and dizzy when I wrote not coming to mind easily.i have had a terrible six month with new health issues aside from the ME. Including three months since I started with shingles. Still enduring the after effects.

      I understand how scary all this must be for you Siena. Perfectly normal with any illness , disease etc. The not not knowing exactly what it is, how long it will last, will it improve or get worse. All very expected thoughts. The longer it does go on, you will start to adapt better. Come to terms with it being the way things are for now at least. Which brings us back to patience. I truly hope in time you will improve and feel better . I would love for you and everyone else to be free of this horrible disease forever. Including myself ! Alas there is no cure and definitely no magic cure. Many find some symptomatic relief from various things they try. There are varying levels of ME from mild , to moderate to severe. With overlapping between them. I am moderate to edging on severe. Some people are only mildly affected and are able to work. Your list of issues is just about identical to mine .

      Pacing is not as easy as it sounds but is vital . To preserve the little energy you have. ME does make you feel like your whole life is collapsing around you. And the younger you are I am sure it can not harder . Not being able to manage have a social life etc. Education and work. I was in my late 30s and had to take ill health retirement from nursing . broke my heart .

      You will reach a stage where you are more comfortable with yourself amid all this. My grandma used to say many years ago 'there won't always be dark days'. I try to keep that in mind when things feel really dark. Take care x

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    • Posted

      I'm sorry about that, it must be really difficult to cope with it all - I hope you recover very soon.

      Thank you again for your advice and for your well wishes! It does mean a lot to me. I've always been an active person, whether that be physically or mentally, and now I struggle to get dressed; let alone go for a run like I used to. Nor can I hold up a book to read without my arms aching to a point in which I am forced to rest. It will take time to adapt, but I am sure that it will become easier.

      I do need to improve with my pacing also, I have trouble with saying no to school or commitments with family and friends, but I have started to listen to my body more despite the guilt and distress that sometimes comes along with it. That would've been really hard, I'm so sorry for the adversity you have endured because of this illness.

      Thank you Janet. Those are words I will remember, without a doubt. All the very best.

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    • Posted

      Thank you Siena. Never feel guilty . You have nothing to feel guilty for. It is not your fault you are not able to do these activities. Take care x
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  • Posted

    I have been diagnosed withME and have all of your symptoms except I’ve never had sore throats, I’m so sorry that you’ve been struggling trying to get a diagnosis , my advice would be to change GP and find one that understands the condition somewhat . I live in New Zealand and we have no specialists in this field to speak of but my GP is quite good . Self management is what you should concentrate on , keep a check on your diet and be strict with pacing yourself . All of this is not easy at your age but your chances of getting worse are increased if you try and work your way out of it . On the bright side it appears that sufferers of ME seem to have a better chance of recovery the younger they are and I have heard of many teenagers who make a full recovery . Look after yourself and keep your chin up . 
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    • Posted

      Thank you for reaching out Jan! I really appreciate your advice. I will be working with a team of doctors soon to hopefully attain an official diagnosis and form a management plan, especially since it is easier to overcome if dealt with at an earlier age, just like you said. Thank you again for your message, take care!
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