symptoms all over my body

[lisad06]

Hi,I would really appreciate it if someone could read my post as any help is very much appreciated. I took the online test which confirmed fibromyalgia.

I am female and 24 years old. First of all I already have been diagnosed with a tremor. Also sometimes I have twitching over my body including my tongue, mostly in my legs. Mostly when laying down. I feel something “pulsing” inside my body. My other symptoms started in September with stabbing pain in my face mostly in my ears and my jaw. My doctor diagnosed TMJ. Before that I went through quite a stressing phase of my life. My other symptoms started 2 weeks later with extreme stiffness in my left lower leg. The next day it spread to the other side but after a few days it mostly went away. Afterwards I started getting painful muscle cramps, mostly in my hips, thighs and fingers which only last a short amount of time. Sometimes it begins randomly or when I start writing, cooking, holding my phone etc. My joints also hurt sometimes. But it always goes away after a while. Then the tingling (sometimes numbness) all over my body started. Again only lasting a few seconds and always changing positions. My muscles are very tense which has been confirmed by my doctor. Also I can’t really move my left pinky toe anymore.
The tingling mostly went away. The muscle cramps/ pain still come and go. After I do sports the shaking usually gets worse. Some other symptoms I have are:
- floaters 24/7, trouble focusing vision (sometimes double-vision), ophthalmologist didn't find anything
- pain when pressing at most of the tender points
- severe problems falling asleep
- dizziness when I get up from the couch/ my bed
- short-term tinnitus which comes once in a while
- feeling tired all the time even when I sleep > 8 hours
- terrible headaches after the smallest amount of stress or alcohol
- cracking noise in my ears when I yawn or swallow
- anxiety
- irritable bladder
- neck pain
- having light bowel problems for > 5 years
- painful menstrual cramps
- dry eyes
- sensitivity to light/ sound

I went to different doctors, got a physical examination, an MRI, blood tests to rule out MS, lyme etc. Everything was fine. No doctor could tell me what it is. Could this be fibromyalgia? I am also very scared of ALS because of the pinky toe thing and the twitching, but none of the 2 neurologists seemed concerned about it. Also the EMG and my age are in my favour. I would be glad getting any diagnosis as long as it doesn't involve a terminal illness. When I started doing my own research fibromyalgia came up a number of times. But I don't really know what type of pain is typical for a fibromyalgia. Does it causes symptoms that come and go? Should I consider visiting a rheumatologist?

Thanks to everyone who took the time to read my thread and potentially respond!

All the best,
Lisa

 

[sunkacola]

Hello and welcome.

It could be fibromyalgia. Of course you want to be formally tested for ALS if you are fearful it could be that. But if all tests for everything including arthritis and the others that are similar in their symptoms turn up negative, then fibro is most likely to be what you have.

As for diagnosis, even if it were a terminal illness (doesn't sound like it) you would really need to know. Whatever you have can be treated, some things more successfully than others, and you can't approach the care of your body without having a good idea what is going on.

All kinds of pain are experienced by people with fibro.
Definitely see a rheumatologist. It is one of the steps you need to take to get close to understanding what is happening.

If you want to look into things you can do to help yourself if it is fibromyalgia, check out this post:

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

 

[Looby69]

@lisad06
I can relate to around 80% of your symptoms. I too have concerns around ALS although 2 neurologist visits, MRI, EMG, NCS all have ruled in my favour and I have been assured ALS us not on the table and that I have to learn to manage my symptoms, including my anxiety.
I suffer bodywide twitching, including scalp and tongue. I have the muscle cramps, the aches, the feeling that my ankle/knee is going to give way (it hasn't so far)
One of my earliest symptoms was of a pulsing sensation down my legs. Often I get a feeling like I'm sat on a mobile phone that is vibrating (this usually occurs in my feet)
I also experience the tremors and feel like my blood sugars are low even though they're not. All of my joints crunch and grind and my pain is never 2 days the same.
I've had blood work done, I'm now on 50mg of Levothyroxine for underactive thyroid and I also take HRT as I am going through the menopause.
I walk every day, at least 60 minutes. Some days it's a real chore with heavy cramping calves but I push on through. I also lift 3kg weights and follow YouTube exercise videos daily.
I'm currently suffering with pain in my right hand and weakness in my wrists although I haven't yet experienced any failure in anything I set out to do.
My point being is, ALS is (apparently) an extremely rare disease, especially in your age group. If you were to ask all of this fibro group how many have experienced our symptoms I'm certain the majority could relate to a lot of them.
It would be wise to discuss your ALS fears with your GP.

 

[Cutiegirl]

Hmmm...I haven't had twitching. It's more of a tingle or numbness down my legs and hands. Achy muscles like you have the flu. If I stay away from dairy, it helps.

 

[cookiebaker]

yes, a good many of those symptoms i think a lot of us can relate to.

I do get the muscle twitches - in random places... might be hip one time, shoulder another.. also get them in the eyelid/corner of the eye from time to time. I also get waves of "pins & needles" - mostly in my legs/feet, but in other areas as well.. but for me, it is mostly caused by arthritic changes in my spine, putting pressure on/irritating the nerve roots.
As a side note, overly tense muscles can produce similar symptoms by squeezing the main nerves too much.

Tinnitus i have all the time - but that can have so many different causes.. from loud noises to vitamin/mineral deficiencies, and so many other things. I went for a full hearing workup, but they could not come up with a specific hearing related reason for my tinnitus... so..

- pain when pressing at most of the tender points

This particular "test" really does not mean much in the way of a diagnoses anymore, and is no longer part of the criteria for fibro... most people will have pain at those points if pressed hard enough and not have fibro, so do not rely on this.

- dizziness when I get up from the couch/ my bed

do you know what your blood pressure runs on average? Low blood pressure can be just as dangerous as high, so worth knowing.. There are also other things that can cause this, like anemia... this is one I would definitely be asking your doctor about.

As for the ALS, if your doctors are not concerned about it, then i dont think you should be stressing over it either. If it was a real possibility, i would think they would be more concerned about it.

There are many other conditions that can present with similar symptoms, and each one needs to be ruled out/confirmed with proper testing.

Stress, by itself, can cause so many problems and do weird things to our bodies. Trying to reduce your stress as much as possible will do more to help you than you realize. doing what you can to try to relax your tense muscles will also go a long way toward helping you feel better. A nice soak in a hot bath, maybe a bit of massage therapy.. whatever you can do to try to relax those tight muscles.
I have a "shiatzu massage" seat cushion that does wonders for my back.. it slowly works up and down the muscles along the spine.. also has heat... and it was not that terribly expensive, either.. around $80 USD..

 

[Cutiegirl]

Ah man, I didn't even think about my twitching eyelid. So I guess I do have twitching! Usually my eyelid twitches due to lack of sleep. My mom had it and she ended up getting botox for it because it was driving her crazy. My youngest seems to have it as well....

 

[Auriel]

Yeah cookiebaker's right a lot of us can relate to a lot of the symptoms you mentioned (I hope you come back to let us know of the developments in diagnoses, I was diagnosed through rhuemie) @Cutiegirl twitchy eye's soooooo annoying (I had my latest bout for 5/6 weeks) it calmed + stopped about a week +half ago, HAPPY HOLIDAYS EVERYONE!

 

[JayCS]

What symptoms like these usually boil down to is (after identifying & describing them) trying out all the many ways to prevent or alleviate or live and cope with them....
Considering it as fibro and hanging around here can help with that, as you may have already seen....
Further ideas aside from rheumatologist would be sleep lab for sleep, endocrinologist/bloods for hormones/thyroid etc., allergist for gut & urologist for bladder (ehm... or do women then only go to a gyn?).
Dry eyes may be a pointer to Sjögren's, but that's something rheums might look for (mine didn't tho, it was a center for rare diseases that suggested getting a lip biopsy, further rheums laughed at the suggestion and said it wouldn't make a difference, I'd still have to find out how to cope with the same problems)...

 

[Janny]

I have felt most of your symptoms plus some more. It's not easy to live with but I think that once you get used to living within your own abilities its easier. I am 73 years old and have had fibromyalgia for 20 years.

 

[eTherapist]

How are you doing first off. I hurt when I read your post

 

[johnsalmon]

Dry eyes may be a pointer to Sjogren's,

dry eyes are also a problem with Hashimoto's my eyelashes fell out early into Hashimoto's and the oil; ducts no longer produced the oil to lubricate the eyes so I use a produced oil medication but the fine line between Hashimopto's and Sjogren's, once you have one autoimmune diseases you will probably have more. For me it was probably the hashimoto's that took the eyelashes and Sjogren's that took the fluid so in these situations it is best to simply treat the symptoms

 

[dw1256]

Hi Lisa,

I suffer from most of what you described, minus the menstrual cramps, I am male.

- floaters 24/7, trouble focusing vision (sometimes double-vision), ophthalmologist didn't find anything - My eye floaters started right before my daughter was born, so going on 11 years. They check out normal, but keep getting worse. They are like strings with some black dots that connect them together. Seems like they continue to expand with time. Most people think it is a tiny dot here and there and can't fully appreciate with it is like.
- pain when pressing at most of the tender points
- severe problems falling asleep
- dizziness when I get up from the couch/ my bed - this is new to me within the past year or so. have to take it slower getting up.
- short-term tinnitus which comes once in a while - Yup
- feeling tired all the time even when I sleep > 8 hours - I usually get 8 hours per night, I feel like I didn't sleep at all almost every day.
- terrible headaches after the smallest amount of stress or alcohol
- cracking noise in my ears when I yawn or swallow - sounds like tmj. This comes and goes. sometimes after a yawn I hear a crack, and then have the cracking noise while eating. Very annoying.
- anxiety - I feel like my anxiety stems from all the pain. Pain fuels the anxiety, anxiety fuels the pain.
- irritable bladder
- neck pain - Have this pretty much all the time, mostly on the right side.
- having light bowel problems for > 5 years - I have IBS as well, which I hear is typical with Fibro.
- painful menstrual cramps
- dry eyes - Have this too.
- sensitivity to light/ sound - This has been getting worse for me, but I think it is worse when anxiety levels are higher.

Sorry you are dealing with this. JayCS is right, you do need to find ways to cope, but it can be tricky at times.

 

[DebMarPir]

Hi Lisa,

You probably know that fibro is a syndrome, so there are lots of other conditions associated with fibro (up to 60 known ones but I would guess more.) These include insomnia and pain and branch off to often include anxiety, depression, irritable bowel, cystitis (bladder), migraines, tiredness even after you slept, etc. The tender points are typical. It used to be they diagnosed by certain tender points, now they expect pain in all four quadrants of the body for more than 3 months running I think.

I don't have the tinnitus, but if you have seen an ear, nose and throat, that could be caused by a myriad of things. Floaters are aggravating, but can be caused also by age I understand. Neck pain drives me crazy!! And leads to my migraines. I used to have horrible cramping and endometriosis (also linked to fibro). Yes, I have dry eyes and some sensitivity to light and sometimes sound, but esp. when I have had a migraine. What I have always done, because I didn't get the pain till the last 1-2 years and the fibro diagnosis is, simply treat each problem as it arises. If you have an irritable bladder, if this is cystitis or whatever, get it treated by the urologist. The insomnia is hard to treat, I have been to a bunch of doctors but am finding some relief from seroquel now. I occ. get dizzy but not that often, but one can take meclizine, which is available even over the counter. See a psychiatrist for the anxiety (or your primary). I use an internist and that's who gave me a diagnosis, not a "family doctor" or gp, because they have two years more additional training. I also was diagnosed with IBS (irritable bowel) in the past, but not really bothering me now. The floaters and tinnitus dont' seem related or the cracking noise in your jaw. But the rest all seems pretty common to me. Hope this helps? - Deb

Your list:

floaters 24/7, trouble focusing vision (sometimes double-vision), ophthalmologist didn't find anything
- pain when pressing at most of the tender points
- severe problems falling asleep
- dizziness when I get up from the couch/ my bed
- short-term tinnitus which comes once in a while
- feeling tired all the time even when I sleep > 8 hours
- terrible headaches after the smallest amount of stress or alcohol
- cracking noise in my ears when I yawn or swallow
- anxiety
- irritable bladder
- neck pain
- having light bowel problems for > 5 years
- painful menstrual cramps
- dry eyes
- sensitivity to light/ sound

 

[Mary Alice Long]

I can certainly relate to you....I was diagnosed with fibromyalgia over 35 years ago, by a rheumatologist.
Now, all these decades later, the rheumatologists will not accept me as a patient with that diagnosis; they
say it is no longer considered a rheumatology disorder, but a CNS disorder. In turn, the neurologist told me
their office does not treat fibro, either. He said no dr. knows what to do with it!! I have to "live with it" and learn
to "manage" the symptoms. As I have been doing just that for decades, it was very discouraging.
I suggest you look into alternative treatments ~ acupuncture, massage, and PT have all brought me some relief;
but of course, insurance and Medicare don't pay for it.

 

[sunkacola]

Hello @Mary Alice Long,
I don't know where those doctors are coming from but they are not giving you accurate information. Fibromyalgia has been suspected to be a CNS disorder, an autoimmune disorder, and several other things. But none of these things has been conclusively proven to be the category into which fibromyalgia definitely falls. that is part of the mystery of this syndrome.

I am so sorry you are not getting better results with doctors. I suggest two things. First, do some research to find out what doctors in your area deal with chronic pain, and then narrow it down to someone who works with fibromyalgia patients, and go there. And the right doctor might not be a specialist at all. You just need someone who is experienced with fibro.

Second, check out the post I linked to above and see if doing any of these things proves to be helpful to you. Ultimately, yes, we have to manage this ourselves because there is no known treatment that works for everyone and there is no known cure at all. Try not to be discouraged by this. It is simply a fact that no doctor can truly help us with this because we are all so different and what works for one doesn't work for another. TYhat's why we hav e to do our own experimenting and build our own treatments.