Possible CFS or FM diagnosis. Again, hopefully not ALS.

Brain and nerves
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For the sake of myself and other people who might search up this post and find it useful, I decided to keep a record of what is going on with me.

Background info: I am a 29 year old male, exercises regularly and works an 8-5 office job. Prior diagnosis before all mentioned symptoms was migraine with aura. 

Symptom: Fasciculations all over body, mostly present around legs and lower spine area. They are good to me on certain days where they decrease in frequency. 

Neurologist: Performed reflexes tests. All passed. Nerves on clinical check without tests were highly conclusive of no damage. Could be due to stress and anxiety. 

Symptom: Leg, arm and abdominal muscles easily tired out. Feels crampy or about to get cramps. Shaky knees. Limbs feel heavy. Pain in muscles or joints intermittently on some days. 

Neurologist: Analyzed tender points and were slightly painful.  Possible fibromyalgia. May cause easy fatigue and deep ache. High muscle sensitivity. Performed strength test and concluded Perceived weakness. 

Symptom: Labored breathing that comes and goes. Feels like lungs are congested and airway constricted all the way to the throat. Usually disappears after a few hours. Occurs Everyday.

Neurologist: Fibromyalgia will not cause breathing issues. Most likely anxiety. 

Presently, over 3 weeks now, the Fasciculations increased with admittedly stress levels remaining the same due to new symptoms surfacing. Feeling extremely uneasy about the muscle issue as now I notice my tongue muscles just above the larynx or Adam's apple is stiff and tires out easily. Also noticed because of this, I am more aware of my speech issues as I felt more tired and lazy to use my tongue. Note that this also comes and goes. Occasionally wake up with pins and needles all over now.

i am going to see the neurologist again on Monday and will ask for a EMG test for arms,legs and tongue if possible. Going to lung specialist on Friday to determine if there is any isolated cause for the occasional breathlessness. I'll update after each visit is done. 

Question for the experienced guys here. Do you concur that fibromyalgia or CFS will produce symptoms like this? 

Sirry for the Long post. I hope as a new member I'll be able to contribute back. 

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Btw, not trying to scare those who are in limbo like me right now. It doesn't seem like ALS as I still have my functional ability. And all these happened in a matter of 3 weeks which is too fast for progression. Highly doubtful but still am holding the constant phobia that symptoms mimic those of ALS.

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Just thought I'd add for the benefit of those of us in UK. I hadn't recognised ALS so I googled it and discovered it is called MND, motor neurone disease, in this country. That might help people to understand the fear.

I hope the neurologist can sort out what's going on. Many of the symptoms do sound like what I've had with CFS for the last 30 years, in phases.

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Thanks pixie22. You have no idea how much this forum is going to help me pull through these tough times. I'm definitely looking to make new friends for support. 

Care me to share what experience you went through? The symptoms , tests and suspicions you came across?

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One thing that concerned me about your post: if I'm understanding your post correctly, your neurologist is putting some of your symptoms down to anxiety, including the fasciculations (which I'd never heard of) and labored breathing. If by fasciculations you mean a sort of twitching, I've experienced this with my ME/CFS (I don't have fibromyalgia). Also, regarding breating issues, I've had periods of what's called air hunger, which is a known symptom of ME/CFS. I've also had anxiety in the past because of all my symtoms, but knew that the anxiety was a separate issue from my physical symptoms. A doctor I originally saw before my ME/CFS diagnosis implied that everthing was all in my head and that I just needed a vacation. Go to the "solve me/cfs initiative" website and see if symptoms of this illness resonate with you. 

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Please keep us posted.

thank you.

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l think many of your symptoms are fairly typical of fibr0 me cfs, def the fatigue weakness loss of energy muscle and joint pains.  lve had those along with occassional twitching of muscles, also cramps and spasms in hands and feet, with pins and needles at times.  lve also read of quite a few who have bouts of breathlessness, which might have connection to anxiety and its fiarly natural people will be anxious when they have such debilitating symptoms that affect lifestyle dramatically, with many having to go for months even years without diagnoses, or as jackie stated below

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new ntbook re mistakes, but jackie stating many are told its in their minds phycalogical, when they know its not, really annoys me, as lve had that with another health problem not easily diagnosed, not common, which really does make you feel worse, and adds to anxiety.   Many also have probs with speech at times and mental fog vagueness, so its possible your symptoms could be fibro cfs, but at least your getting the tests done, to elminate other causes.  best wishes

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Hi Lynne, the mental fog is so frustrating and embarrassing, especially when you want to get a clear picture over to doctors. When I lost my voice a couple of years ago I put everything in a text and showed it to doc. Now I keep a running draft text and show it to doc. It helps me to make sure I don't leave anything out. Works for me. Hah!

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Good idea, lve tried notes, whether they do any good l,m not sure, but at least l know lve told them symptoms. l at one time thought of getting ccctv put in my home, so l could film myself, so dr could see what a wreck l am at times, mornings like a zombie, just to  convince them how it was during the day.  Whatever it takes to get through to them, glad it works for youlol

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Hi jk

Was it scary that you woke up one day finding new symptoms that you never seen before or associated commonly with cfs or fibro? Every single new symptom I get is giving me the creeps that my body will just cave in any moment.

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l find it really scary not so much over new symptoms daily weekly monthly but that the symptoms seem to be gettin worse, and l dont normallly go on net or do anything much in morning, due to waking feeling shattered with fatigue, weak, stiffwith aches and pains, and the other bits, sore stinging eyes, thirst, sore skin, can barely function for 1-3hrs, but slowly do loosen up a bit to function at low level, essential minimul jobs 5min at a time, then rest 20min due to fatigue breathlessness, do a bit more, on a good day well okish day can with will power get a taxi into town, not to go around town, cant manage that now, so just to supermarket, needing trolley to support me, leaning on it. or maybe adventurous and try for l50yds and 2-3 shops, but needing 2-3 stops sitting on whatevers at hand, bench wall doorstep ledge,getting tireder breathless, if nowhere to  sit in trouble to stand lean, feeling embarressed and an idiot, but manage to do it and get home by taxi, usually on shutting door leaning on near stand for l0min to just get into sofa, unpack later.  Its an ordeal endurance l do 2-3 times a week, little if any pleasure, but alternative is settling for being housebound, what next bed bound, this is how l feel now, might feel a bit better this aft, as also after affects of30min light gardening being a garden lover couldnt stand to see it neglected any longer, for us on our own practicals a big problem, no  slave at hand to  help support.  But this is how l feel on a bad day at a bad time of day,,, l do at other times feel a bit better and can have a laugh as is essential to keep going, plus my little dog motivates and is a funny character that helps me. But l do know that l cant do as much as a month ago3month ago, 6months ago,soit is a big worry.  What makes it worse even, for me like you and others is not having exact diagnoses, and drs who are often  casual or fobbing off dismissive, meaning having to use more energy and becoming more anxious battling with them to accept that state your in and do more extensive testing, not leaving you for months or longer, livng live of a semi invalid. Worse in uk nhs now due to cutbacks, and competitiion. you at least sound like youve drs who are referring you for exact testing and to specialists, means something, l,m presently waiting to see rheumatologist a 4month wait after months of severe symptoms, now weeks away. Scuse long rant, just frustration at a system or drs who dont seem to understand or take it seriously and l know some do and are good, but some dont, anyway thats my feelings at present time. But wish you and all who are suffering and waiting best wishes.

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Quick correction: Neurologist tomorrow. Will ask for tests to be done. 

I feel like crap again today. My joints are aching, muscles tired and my lungs are killing me. I'm starting to hate this thing if it keeps giving me new stuff to think about. It's bad enough that we already have to handle a big mountain and we are presented with a bigger one. 

Is it common to feel pain at places that you never felt pain before? 

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I've just read through your post and I can really identify with how you feel. I have just one practical thing to mention - I find that in Sainsbury's and Asda ( and possibly some other supermarkets) I found there are motorised carts you can use to get round the store, you just have to ask at the customer services desk. I use them when I'm going through a bad patch (usually precipitated by a virus infection) and it reduces the energy I need to get round. And it is fun tootling up and down the aisles!

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hi thanks for info advice, glad to hear l,m not on my own in the struggle to just shop, l can even recall way back in the past when trolleys had a crossbar, in mad moments standing on it and giving a push to get a ride, so sure l,d enjoy tootling up and down the aisles, got to have some fun doing it.

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Just finished my neuro appointment. Based on his clinical physical check, he still does not find any forms of clinical weakness. More of a muscular fatigue probably. Told him about breathing problems like not having enough energy to expel my words loudly and also my tongue and jaw gets really tired if I talk too much or chew too long. Have been prescribed therapeutic treatment for low doses of anxiety and tensed muscles which might cause muscles to easily tire out. Meanwhile also performed blood and urine test to check out any abnormalities especially in creatine kinase.

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A tad disappointed that I couldn't do my EMGs or nerve conduction tests. But the doctor guaranteed that at this point of time, the tests will NOT show anything. Good thing is that he is still open to more tests if the problem persists in the longer run.

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Hi Lynne, just to add to pixie's post. I had to go to Tesco on Tuesday. I went in without trolley cos I needed scooter. Sat on scooter, member of staff came to say it was on charge and other one just been taken. I sat there for a couple of mins then asked same member of staff if someone could bring me a trolley to lean on. She obliged. I only needed a few things but they were spread out over the store. On way out I called at customer services to relay the problems I'd had. She apologised and said that their policy is to find a member of staff to take me round in a wheelchair if no scooter available. I wish I'd known this! I got home and was stuck in car resting for an hour and a half resting before I could go in. My neighbours daughter saw me in car and came to say hi. I asked her to take my shopping upstairs to my flat which she willingly did - very kind 😌. The moral of this story is. Use the scooter, if not available, ask to be wheeled. We have much better things to do with our energy than struggle round the supermarket!

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You're doing all the right things. Keep on investigating til you're sure you've got to the bottom of the problems and recieving best treatment for yourself. I'm very fortunate to have an osteopath close by who specialises in M.E./CFS. I was on carers coming in daily to get me up and fed and leave my lunch ready for me. Then I met Raymond Perrin, (who developed the Perrin Technique). It cost me thousands but at least I'm more independent now.

keep us updated with your progress please.

regards.

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Hi jk

I believed you told me that you suffered from air hunger. Could you perhaps explain a little how your air hunger would feel? And how it would start and end?