Lots of symptoms (and worry)

[Meg123]

Hi all,

Long time listener, first time caller

I'm 45 years old - healthy, active, zero health problems up until about 4 years ago. I started to experiences some dizziness, not like a vertigo but more like a "not quite there" feeling. I don't know if that makes sense. Almost like a consistent alcohol buzz. Saw a neurologist, had a brain MRI (all clear). The feeling still comes and goes.

Around early 2021 started experiencing all over muscle and joint pain. Like having the flu. Back to my PCP - she did a bunch of blood work - inflammation markers, Lyme, etc. etc. (all fine). I mentioned possible fibro she said no because that would be more like an all over pain that made it so it would hurt to be touched?

April 2021 all over twitching started. Constant muscle twitches like popcorn popping under my skin. Also started experiencing muscle weakness in my right hand and right foot. Had an EMG (all clear). Eventually the weakness went away (muscle twitching still comes and goes).

Sleep is horrible - I also get a lot of restless leg at night.

2021-present - Have been back to PCP multiple times for aches, pains, tingling, numbness. Finally she told me I have health anxiety and prescribed a depression med. I'm not depressed. I am just SO frustrated by how I used to feel so great and now most of the time feel so crummy. I have two tween boys and they are fun and active and I just really have to push through to keep up with them. It's such a bummer.

A month ago the right hand and right foot weakness came back. As well as crazy muscle twitching. Like waking me up in the middle of the night movement. Also sometimes I feel like I have to slow down my speech otherwise it comes out all garbled. My fine motor in my right hand is challenging.

I'm really at a loss. I'm wondering since I had an EMG in 2021 and it was all good - should I still be reassured by that? I almost feel embarrassed to go back to the doctor because I can tell she thinks I'm nuts.

Does this sound like fibro to you guys?

Thanks in advance for any thoughts

 

[sunkacola]

Hi Meg, and welcome to the forum.

I can't, of course, diagnose you but yes, this sounds like fibro to me. And it also sounds as if your doctor is not the right doctor for you, and that you would benefit from finding a new one. First, she is wrong in saying this:

more like an all over pain that made it so it would hurt to be touched?

For some people with fibro this is true, and it is also true that for many of us there will be times when certain parts of our bodies (for me, that is not always the same places) will be inordinately painful when touched, pressed, or bumped. But this is not true for everyone and in fact there is no one thing that anyone can say, if you have this or do not have this then you do or do not have fibro.

And second, if you feel that your doctor thinks this is all in your mind or that you "are nuts", then you need a new doctor. Seriously. Find yourself one who is actually seeing fibro patients and will listen to you. You are not nuts.

If you say you are not depressed, then it is unlikely you are wrong about that. If you are not depressed you do not need anti-depressant medication. Now, sometimes taking such a medication will help with fibro pain because it addresses some underlying anxiety that is contributing to the pain. But it is not a cure-all and it is not appropriate for everyone. If you don't feel it is helping you, I suggest you tell your doctor you no longer want to take it.

If you feel that you have anxiety, then that needs to be addressed and I recommend you do whatever you think might help to alleviate this. Anxiety is stress, and stress is a huge trigger for fibro pain, and that it probably true for everyone with fibro.

I'm wondering since I had an EMG in 2021 and it was all good - should I still be reassured by that?

You can be reassured that you do not have whatever would be seen by the EMG. But that doesn't mean you don't have fibromyalgia. The fact is that you are still in pain and experiencing these other symptoms you mention. So this is what needs to be addressed.

Be aware that there are many conditions that have symptoms similar to fibro. If you have not already done so, it is worthwhile to get tested for all of those other things in order to rule them out.

You might want to read the following post and see if anything there looks worth trying. May people find that if they make some lifestyle changes it helps tremendously in managing fibromyalgia.

And feel free to post here with your questions, concerns, and even your complaints. that's what we are here for.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Meg123]

@sunkacola thank you so much for the kind response. This makes me feel a lot better. I just read through your advice for managing post, and it has given me a lot to think about. I feel pretty good about my diet and forcing myself to take long walks every day (even though my body is usually howling about it the whole time!), But, I am a people pleaser and say yes to far more things than I should. I'm going to try to cut back on that.

I never even took the depression medication because I know I'm not depressed. I honestly think it's this very dismissive thing that doctors do to middle-aged women, which is to look at us like we are hysterical and then prescribe depression pills. Very frustrating. And you're right - it's time for a new doc!

 

[sunkacola]

You are correct in saying this is a common thing that doctors dismiss women far too readily. It is done to men as well, but far more often to women. At least, these days, they cannot just summarily lock up a woman in an institution the way they used to.

It's hard for someone who is used to always saying yes to learn to say no. But trust me, it is very empowering when you do, and you will find that it greatly benefits you to focus more of your attention on taking the best possible care of your health.

 

[JayCS]

I never even took the depression medication because I know I'm not depressed. I honestly think it's this very dismissive thing that doctors do to middle-aged women, which is to look at us like we are hysterical and then prescribe depression pills. Very frustrating. And you're right - it's time for a new doc!

I second everything sunkacola has written thoroughly, incl. that this can happen to men, my first psychiatrist said he doesn't think I'm depressed, suggested an antidepressant, but then wrote in the report that I was. My sleep lab psychiatrist on the other hand said he'd write a report if needed confirmation that I'm definitely not depressed.
I'm not always one for immediately changing every doc, some educate themselves or listen, but I agree yours doesn't sound it.

 

[BlueBells]

Hi @Meg123

Now and then I get just about everything you mentioned, and this one :

I started to experiences some dizziness, not like a vertigo but more like a "not quite there" feeling.

I've been getting that now for the past few years, and even wondered if it was stroke or heart or ...etc, as we do. I've been checked, everything clear, but it still happens.

Your comment is the first time I've seen that written, and I had been thinking about mentioning it here myself.

Being a long time listener, I know how much the support is helping you, just knowing you are not alone, or crazy, nor imagining everything. I've found I am in a much better mind set now, and improving all the time.

Oh, the depression mis-diagnosis , I copped that one as well, and the tablets were sending me nuts. I think they caused me to have the problems the doc thought I had ! I was on them for a few weeks and friends and family started showing their concern, that's how bad I got. Very good thing you did not take them !!

Welcome to the forums

 

[Meg123]

Thank you @BlueBells - you're right, this forum helps so much!!

 

[Fibrosuck]

Yeah sounds like you have Fibro. Bad sleep quality and restless legs suggest you may have sleep apnea. When my doctor said I had Fibro, she sent me to a sleep clinic. They confirmed I had Sleep Apnea with Restless Leg Syndrome. I was prescribed Gabapentin for the Restless Leg Syndrome and a CPAP machine for Sleep Apnea. My quality of sleep is better but not good. I don't wake up in the morning with a headache anymore, but I feel that I haven't had a deep sleep. Its better than nothing.

 

[Meg123]

@Fibrosuck Oh hmmmm that's interesting, I had never considered sleep apnea. I have a friend that uses gabapentin and she says it works great for restless legs. I might mention it to my doctor at my next appt.

 

[Ayame_34]

Hi, maybe you can ask your doctor to refer you to a rheumatologist. That's how they found out that I have fibromyalgia after so many tests.

 

[sunkacola]

I find cannabis is very helpful in reducing or even eliminating restless legs at night.

 

[Buckle]

This does not sound like "my" fibro. But that doesn't mean anything. I once knew a lady in Scotland that became bedbound with hers. Yet I can build outdoor decks, greenhouses and garden with mine! Am I sore afterwards? Absolutely. But still not to my bed.
If I experience dizziness, it is usually related to my seasonal allergies. However, I am an older person and there are some OTC and highly recommended allergy medications, that can cause quite a state of mental confusion, after a number of doses, especially in folks over a certain age. Usually the 24 hr ones. I have found that not all symptoms are connected to fibro but can be the "normal" illnesses that people get. Definitely look into getting a doctor that will support you and your needs.

 

[Shel]

Hello- I’m sorry you are experiencing these. It’s so hard not to know exactly what causes our symptoms.
I have many of the random symptoms you do. Mine began in 2016, after a surgery. My life has not been the same. There’s no consistency to what causes pain or weakness. Being on my feet for 2 hours in a crowd can totally wipe me out and then I can hike for 2 hours with no repercussions. Or vice versa. One pretty consistent thing is that after I exercise (if I can even call it that now), I feel light headed or like an out of body feeling. Or after I ride a bike, too. Anyone feel this way? Reasons?

 

[BlueBells]

Hi @Shel

I feel light headed or like an out of body feeling. Or after I ride a bike, too. Anyone feel this way? Reasons?

I've been getting a sort of out of body feeling at times, it's confused me somewhat. I'm not aware that I am stressed, but I do know I'm pushing fibro to the limits and trying to avoid a crash.

Anyone else had these odd feelings?

 

[sunkacola]

I also have that out-of-body sort of sensation at times. For me, it is a sign of serious fatigue coming on, and means that I have to rest.