MS/FIBROMYALGIA/CFS???

ayishaill

Hey all!

This is my first time posting here so bare with me, will try to make this as concise as possible. I'm really looking for some advice/opinions of people who have a chronic illness and also have a diagnosis as I am STILL in limbo land and getting very frustrated with these doctors...

So for about 3months september-november 2015 I was experiencing severe fatigue ,emotional changes, mood swings, insomnia, dizzy spells, headache,tingling and numbness in hand, lethargy, intolerance to alcohol, and one instance of blindness (lasting about 4hours)....

Then in December I got mastitis somehow, treated with antibiotics. About a week after the antibiotics I became very
ill with a flu like illness swollen glands,sore throat,fatigue,rash on face, muscle aches... originally doctor thought lupus because of rash and ran an entire blood panel... not lupus. Was given antibiotics again... did nothing. Remained in severe pain (joint and muscle) for about a month... other symptoms I initially had were headache, photophobia,malaise/ffatigue, swollen lymph nodes,extremely sore lungs, cough, shortness of breath, numbness in left leg. During this first onset I had two 'attacks' of sudden weakness in legs (couldn't walk) or feel the left one, shaking all over and couldn't use my hands, felt as if I was not in my body (these attacks both lasted 1hour roughly) and the first one was triggered by a bath.

Since December the severity of these symptoms has somewhat subsided but my current symptoms (now April) are joint pain, muscle pain, fatigue, photophobia/sore eyes, frequent headaches, personality changes, one swollen lymph node supraclavicular (non malignant), spine pain, shortness of breath (constant), stomach ache, bowel problems, numbness in left leg, strange feelings in extremities (sudden coldness in feet when in bed), tingling in right hand, twitching body wide (getting worse), hand tremors after excersize or in response to heat, heart palpitations, internal vibrations, trouble differentiating hot and cold on my hands, pain from things like a touch or cold breeze, swelling in right hand in response to heat...

That's all I can think of right now... so all in all I have been experiencing symptoms for 8months Noe and still do not have a diagnosis... I have had a lot of tests done and pretty much everything Barr the three in the title have been ruled out... I have a brain MRI this week for possible MS... apologies for the essay but I wanted to give as much detail as possible. My question to you guys is out of the three illnesses, which does it sound like most or is it possible to have more than one? The reason for my concern is that the neuro symptoms per date the body symptoms....

By the way i am 22yr old female.

If any of you could give me some advice and input is really appreciate it! I'm starting to lose faith in the doctors....
Thanks so much xxx

Lollipops23

To be honest there's so much going on that it really could be anything. Some of it is stuff I've experienced firsthand (numbness/tingling/extreme tiredness), but there's plenty that wouldn't necessarily be symptomatic of MS.

My advice is to just tough it out until you get your MRI results.

misstearheus

Very very similar to myself. I do occasionally read the M.S. Thread and stuff mentioned on there does sound familiar. Only reason I had counted M.S. out was that 1) with all my back-and-forth Doctor's Appointments, - surely lesions would be indicative if I had any, and 2) what I was going on was that I didn't have lesions all over my body. BUT, I've actually just looked up 'M.S. lesions" and, from what I can see, M.S. is to do with lesions in the brain... I don't know anything about M.S. but that has made me think now. Howandever, I'm still swayed towards Fibro in my own case, due to my swollen Lymph-nodes, and that the Fibro Trigger Diagram with all the points is very much me. Pretty much most of the exact same locations mostly as the diagram, feel bruised when touched strongly/pressed-in. Body feels like 1 gigantic humongous bruise really.

Myriad of similar mixed stuff like you mention, but 3 main things are, I feel bruised all over. I feel like I constantly have the 'Flu/Cold 24/7 even though I've no physical 'Flu/Cold symptoms. And I feel like I have a sober Hangover 24/7 lol. I don't really feel tingly and get pins n' needles only an odd time, but not to the extent of worrying about it I don't think. People speak of numbness... Because there's so much going on, I don't know if I get numb lol. I get dead-legs a lot but now that I think about it, it is numbness because if I were to try walking I'd hit the ground, wouldn't be able to put any weight on it or I'd buckle underneath. And I do feel pins n' needly in my arm an odd time. But only sporadically and those kinds of things go again after a few minutes. I know people can experience pain differently, but for me, I would say my achiness is more all over body weakness/exhaustion from extreme Fatigue rather than physical aching. I'd be more feeling like I'm bruised all over rather than aching all over.

But shure, in a nutshell, everything sounds so bloody similar and multiple things have the same symptoms! So it's so hard to know! Hard to know what's going at times. So much is sore sometimes that ya just don't know where exactly you are sore! There's always some self-doubt that creeps in wondering if yer going insane hah or that it'd be much easier to put up with it all and say nothing and avoid any hassle. Also, ya just get used to everything after a while! It's just hard. I did get knee-jerk reactions a fair bit as a teenager when sitting absolutely still. I think my take on it at the time was that it was due to over-tiredness. Don't experience that jerking much at all really now though.

Actually, below my thumbs have just started getting sore a couple of days ago and that has actually made me wonder more about numbness now...

A couple of things to do with Fibro seem to fit my life too though I have to say.

I did go through a few spells of bad Eye irritation one year over the last few years of being struck down with this but I haven't recently. You mention Blindness... I actually have mentioned this to one Doctor at some point, it's probably nothing! but, I would easily topple over in the dark. I know it's the dark! But, if ya were in yer bed and got up to turn on the Lightswitch or felt yer way around the room to get to the Bedroom door to go out of the room, I would easily fall over. And it's probably a very funny thing to say, and I could be wrong but I reckon ya should be able to do that easily enough even in the dark?!? But I would definitely be a good bet to fall over doing this. It did slightly concern me in case it was something to do with the brain or a mobility issue or Eyesight or balance but it might be nothing. It might be something it might be nothing! Who knows?!? But Blindness. Oh yes! I actually do feel like I go blind lately! It's insane. It's only a couple of minutes, whenever I wake up. Now this is different to feeling groggy or half-asleep when ya havn't enough slept, but a few times lately, on waking, and also if I wake up in the middle of the night, - it's just total pitch-black black blind lol. Yer eyes would generally adjust to the environment I would think, but it's like something doesn't register with my eyes that they need to adjust to the current environment. It's like I'm looking out of closed eyes even though they're open! It goes again after a few minutes but does happen a fair bit lately.

Fun and games eh! Merrygorounds and Carnivals! Oh a myriad of things just like you. A whole host of things. Also a multitude of Sensory issues. The Door-bell startles me. The Washing-Machine whirring up again mid-Cycle frightens the life out of me lol. A text from Phone right beside nearly made me fall off chair one day even though I knew I'd be shortly getting a text lol. How are you communicating and cognitively? I would describe a lot like Pregnancy symptoms too. Without the Baby! Nausea, feeling sick a lot, always hungry even after eating big meal, smells, aversions etc. I'll be a Pro with Morning Sickness if I ever get pregnant lol.

It's so hard to know. Fibro does seem more fitting to me and my life though. But not once ever was M.S. mentioned. Not once.

I think I'm gonna ask to get checked for M.S. now. It can't hurt pardon the pun!! . It's been a long time since things didn't hurt lol! Have to hold onto the humour! If ya don't laugh you'll cry!!

Kurtosis

Mod note:

Hi ayishaill,
First of sorry to hear about all that's been happening to you and that you're losing faith with your doctors. Unfortunately however the rules here don't permit asking for medical advice (i.e. A possible diagnosis) as none of us here are qualified or authorised to do this. I will leave the post up for other posters to offer any general information.
P.S. I have moved your posts from the MS thread here as they were duplicated there.

To all posters, please remember that offering medical advice is not permitted.

Tropheus

I was diagnosed with Fibro a few years back and many of my symptoms would be similar to yours. As you're probably aware, there is no test for Fibro so it's just the elimination of all other potential causes of symptoms.

Even though I have a diagnosis. I keep an open mind as to other potential causes. Lyme disease is one that interests me, however, it's difficult to diagnose after the initial infection and treatment is complex.

kangaroo

I've experienced nearly all of them as part of my ME/CFS
I don't have breasts (I'm male) so have not experienced mastitis. I have experienced costochondritis, which is pain and tightness in the rib areas which is not unusual in ME/CFS.

Important to rule other things out as there are better or more specific treatments for a lot of conditions than there are for ME/CFS, though fibromyalgia is in a similar category as ME/CFS. Also rheumatologists tend to say that Fibromyalgia and ME/CFS are similar things and then give a fibromyalgia diagnosis. A problem with this is, in my opinion, the advice given to fibromyalgia patients about exercise is often inappropriate for people with ME/CFS.

Some people say that pain is more a problem fibromyalgia but the m in ME stands for myalgic (=muscle pain) and pain can certainly be a big problem. I had over 100 physio appointments for various muscle/tendon pains before being diagnosed with ME/CFS.

littlemissfixit

Hi, I cannot offer any answer to your question but I can sympathize and I suppose that's better than nothing. I've been in the same boat for over a year, and losing faith as well.
Short history: January 2015 tingling hands coming and going, April 3 nights of high fever, May: headaches, nausea, painful eye, ribcage pain (recurrent for 3 wks), all went away all good until August where I mentioned the tingling hands to GP, full bloods ruled out VitB12 def., Lyme's, etc. Sept to Nov: strong pain back of head and neck, pins and needles hands, arms and legs, brain fog, loss of dexterity, blurred vision one eye (still unresolved so may be just coincidental), fatigue, very unpleasant crawling feeling along spine. All worst with heat, exercise, first thing in morning...

My GP is very good and understanding, so I am happy with that side of my care. I was referred to neuro, waited 7 months for apt. in meantime saw neuro for private consultation just for peace of mind. Ordered MRI, which I had last month. Since January though I have felt quite fine, apart from few bouts of severe fatigue in afternoons and the tingling hands which is now pretty constant.
Just got a letter Friday: brain MRI is normal. That is good news right, my frustration is, that's where the letter stops. So what now? After being referred and waiting for the past year, it looks like I have to start again by going to see my GP. There is no follow up, no continuity, no communication and that's what is driving me nuts.

I've put on hold going back to GP, clear my head of frustrations before getting back onto the whole referral train again!
Let us know how you get on with MRI. Best of luck!