True hell waking up in the morning

[Brenda K]

DJScott
I too was on Lyrica. Maximum dose. High amounts of Morphine Along with many many other drugs. Soooo many awful side effects. I ended up quitting all of them. I just couldn't take the side effects and the awful weight gain which made my sciatica so much worse. My left side has nerve damage along my spine (two failed back surgeries.... the first surgery I was literally butchered). Nothing like going in for a fairly routine surgery... discetomy snd waking up to the surgeon next to me saying be prepared for permanent damage....he said... we really had to tug on those nerves...!?!? What dr says that? He never should've been the one to do the surgery as the damage was so much more severe than they thought. A second surgeon had to be called in and they literally had to pull chunks of a blown out disc that had embedded in my sciatic nerve
I had to learn how to walk all over again. The second surgeon was disgusted with the mess that was left behind. Ended up with a fusion and bone grafting that should've been done the first time. While that stabilized my back the damage was already done leaving me in agonizing pain and a left leg that is very weak and does not work right.
Whoops. Got a little off topic. Anyhow. For me, my vibrating, or tremors started in the last 2 years. My head shakes a lot, but I honestly believe it Is still from just how awfully tense my neck and shoulders are. The tension goes right thru my face and into my skull so I think that is the main cause.

The vibration really does leave you with that sick nauseous feeling tho.
So glad to hear that decreasing your Lyrica helped tho!

It really does help to voice your crazy symptoms here... it's almost guaranteed someone else is going through the same thing. Sometimes I am honestly scared to bring some of this up to my regular gp. She always looks at me like I have just grown two heads. I am sure she thinks I am a hypochondriac. I know I feel like one.

Also when they max dosed me on Lyrica it messed with my eyesight so bad I couldn't see. It was like I was walking around without my glasses on lol I am fairly blind without them.
I still have double vision some days, but it seems to only happen when my sensory overload kicks in.

 

[diamond]

Mine isn't drug related and started years before i took any medication.

 

[diamond]

LOL yes BrendaK...that look like I've got 2 heads ....my GP ( PCP) once rolled her eyes when i said i found the noise of the TV overwhelming.

When i told her i had noticed my brain couldn't picture or mentally work out the position my body was in when my eyes were closed in bed...i tried to explain further that if my legs and feet were crossed or touching each other or my arms laying in various positions i couldn't visualise or work out what was touching what part of me.....i know that sounds weird and i hope you all know what i mean anyway she replied..Well you can see now!

LOL yes i could because i was sat in a chair with my eyes open. I was trying to describe it was as if part of my brains normal function was blank and fuzzy....she didn't grasp it at all....i definitely got the 'two heads' look!

This was at the beginning of my fibro journey where it was all a mystery to me....i gave up mentioning unusual things after that.

I might have ended up with this woman has 4 heads on my record otherwise!

 

[Brenda K]

Diamond. I had a good laugh at this. I swear I caught my gp rolling her eyes once at me as well. She is retiring soon and I am dreading what the next one will be like.
If only there was a way you could have them magically walk in your shoes for a few days! Wow what an eye opener that would be for them!!

I remember when my daughter put her back out and had to crawl on the floor just to get around the house because she couldn't stand. She said to me. Oh my god Mom. Is this what you go through?!? Every day? I am so sorry! I never understood and I have no idea how you ever managed being a single Mom, working three jobs and looking after me. You are my hero!
I bawled. Not because she finally understood, but because of what she had to go through. I feel as though it is my fault... well it is... its my faulty genetics. It completely broke my heart to see her suffer as I have.
My Fibro Dr said there is a very strong chance that she will someday suffer from Fibro as well. I truly hope that day never comes.

 

[Peaceandquiet]

We all seem so in tune with our own bodies here. Each of us has experimented with this or that and we come to a point where we know what's right for us.

I have that buzzing/vibrating right now....very central through my body. In my mind it has always been just a super-awareness of my cells vibrating or the blood flow or maybe nerve activity. Sometimes it is nauseatingly strong.

Brenda K, it just occurred to me that before I was on blood pressure medication it was a much more horrible feeling, but similar sensation. Have you checked your BP lately?

 

[vickythecat]

OOOOOOHHHHHHH MYYYYYYYYYYYY GOOOOOOSH!!!! I'm not the only one out there with these problems? I'm not crazy???

So Vicky... you said... "When I hear someone with fibro still working full-time with kids, a social life etc. my first reaction is jealousy and shame. And I hate myself for it." There is nothing to be jealous of with me!

Sooooo see Vicky... we might "look" ok on the outside, but inside we are suffering just as much as everyone else. I think that is why people don't believe or understand that we feel so bad - because we are always putting on a front as if everything is great! :-(

I have to address this issue because I don't like misunderstandings, especially not on a forum where we all know first hand how 'invisible' fibro is.

In that sentence you quoted, you quoted me right. I am human at the end of the day and I am admitting to my feelings of jealousy and shame. But then I also add that I hate myself for it; hate myself because I KNOW you guys working full time, with kids, with a 'social' life, the make up on, that smile on your faces etc etc etc, do not have it easy at all. Your fibro is as invisible as mine. I know, why? Because I have been there. We are all here, living with this invisible illness, one way or the other.

I believe it might help to picture why a person can feel jealous, shame and self hatred all at the same, so here's a little summary of my life.

I've had to work my whole life too, starting from the age of 17, got my MA from a reputable university, studied and worked despite serious mental issues, accidents, injuries, chronic pain, trauma's and yes, finally despite fibro. I know it is not easy, it was every day being out there wearing a mask, and hiding crying in the bathroom, putting back on that smile and getting on with this life that is expected of us....

But why these initial feeling of jealousy? Because I am at a point in my life that I can not work at all. How does one gets to that point? Of course we all have to work, because we have to eat, have a roof over our heads, to be alive....

Well, once you really really realize working and making money is not an option for you anymore, you hit rock bottom. This is what happens; little self esteem you had, vanishes; your independency, gone; you as you knew it, the strong you fighting against all obstacles in life, no longer there; living your life for loved ones, you believe they are better off without you....

Then you look at what will happen next in your life with no income = homeless, penniless. Ok, you tell yourself, then I will be homeless. Then I will also start to starve, and then I'll die. And you know what? You are ok with that. Truly ok with that. In fact you look forward to it. You've hit rock bottom so hard that you don't even realize there is something wrong with your way of thinking.

Now I am very very very lucky that I do have a mother and sister who asked me to move in with them (after being homeless for weeks), so for now I do have a roof over my head and food on my plate, and I am every day thankful to them. But having been independent my whole life, finding myself where I am now....combined with living invisible illnesses every single second of my life, mourning my losses every day; knowing I will never have kids, let alone grand kids, no marriage, no love, no intimacy, no job, no money, no friends...

Many of us on this forum are very very very sick. We did not get here overnight, we have been through a whole journey of pain and loss. And yes, ours is as invisible as yours.

I am genuinely sorry if you (and others) felt angry/attacked by my words, and were reminded of how invisible your suffering also is. Your suffering is not invisible, I see it. I know it. We all see and know it here on this forum.

We are here for each other, to support each other in this cruel painful world.

 

[DJScott]

I'm sorry to hear that Tipnatee! :-(

 

[diamond]

Does the vibrating cause severe burning pain in anyone else...or mostly just the sensation and feeling nausea?

When mine started it was just the sensation in my legs.

Then a few months later the vibrating turned to pain and along with a fall and broken foot was part of the onset of fibro.

 

[sunkacola]

I agree that waking up is the worst time. Often I barely become conscious enough to take a pain pill and then lie there until it takes effect. Many days I don't feel as though I perk up until 2PM or so. But I am an early riser, and prefer to get up early.

Most mornings I am awake by 5AM, no matter what time I go to sleep. If I don't get up pretty soon after that, I will just lie there thinking negative thoughts.
Don't ask me why I cannot think positive ones....I try, but it doesn't work, I just have to get up and start doing something to make them go away

Then, I have multiple chores to do around the place and with my animals. No one is here to do them or help me so there's no choice. And I go to work two to three morning a week at a very demanding job.

I think it is better, for me, to get up early, no matter how bad I feel. But some days, especially if I have been schlepping around heavy things all day at work, I am completely ruined by the time I get home. However, I have to do a number of things for the animals when I get home as well. If you don't have a partner, you have to do it all yourself. The unfortunate thing is that because most days it is all I can do just to do the necessities, the other things like house maintenance go undone.
I feel really bad because I was always, always a person who kept up with everything and now I don't. I fully understand the shame feeling that goes along with that.

 

[Tipnatee N]

Does the vibrating cause severe burning pain in anyone else...or mostly just the sensation and feeling nausea?

When mine started it was just the sensation in my legs.

Then a few months later the vibrating turned to pain and along with a fall and broken foot was part of the onset of fibro.

my viberation come with sometimes comes with just feeling the usual heavy fatigue my body feel heavy and very sluggish , sometime with lighting strike pains or many other random myofascial /paresthesia/ allodynia.

My body sensory always out of bounce , but during buzzing nerve my body sensory is completely off. I'll just runing in to thing like someone kept push me around left and right, or many time I do get a sensation of feeling like I'm walking in the quick sand.

A while back during my first year of the different type of nerve buzzing experienced ( yes for me they do comes with sizes and style of buzzing) . One of the weirdest type of buzz I mistaken it a lot for an earthquakes , or a subway trains line running underneath my house. only to learned that there was never a subway line under me , but I only once right about the earthquake amoung over many of quaking buzzing sensation that has been going every single day since. So much so the only symptom with similar "inner quake" described was MS so I thought my doctor missed dianosed me for a while.

 

[Brenda K]

Peaceandquiet. I will get my dr to check again, but I've haver had any blood pressur issues, it's always been bang on whenever she checks, but doesn't hurt to get her to check it again.

Diamond. Yes I also can get that burning along with it, although for me its more the nausea. I also find that when the vibration gets really bad that I feel extremely off balance, like I am drunk and can't walk straight to save my life.


Sunkacola. Sometimes I think my dogs are the only thing that keeps me going.
I am alone on an acreage, finally had to sell my horses this year. Riding was too painful and I can't lift my saddle anymore hardest thing I have had to do. I miss them dearly but just couldn't do the chores or fix fence anymore so it was time.
I completely understand about the house maintenance. I have had to let a lot of things go over the past couple of years because I simply cannot do it anymore.
I feel so guilty and always stressed looking around and seeing what I can't do stare back at me! It's maddening. Your mind wants to do it all but your body just can't. It makes me feel defective.....like why am I so broken? Why can't I just push through this? But we all know what happens when we do that.
Grrrrrrr it's just frustrating.

 

[diamond]

oh wow ...me too...Balance issues...like im going to topple over with each step. ...swaying and bumping into door frames and hanging on to furniture to get around at its worst.

Tipnatee....i also get various levels and styles of this buzzing vibrating sensation....the level can be so high it feels like my body will explode from the inside out...and goes sooo heavy like you describe....sandbags attached ...walking in quick sand barely able to pick your legs up for each step...and so slow to move around.

Kind of a relief its not just me ....thanks for all these contributions of experiences.

Yes yes... that maddening feeling when you look around and all the house/garden maintenance or house chores you long to do and always took pride in is now beyond your capability.

 

[Tipnatee N]

burning like my body suddenly on fire and feeling like I'm about to explore from inside out, yep that's me too. That's usually how I get panic attack and hyperventilation non stop. Sometime it's so much I threw up on top of it what a mess .

Some time I try to coming up with the understandable code names so I can explain my condition forecast to peoples around me, like how big of my inner quake today is it maybe around 5.0 or possibly 8.0? Inferno or volcano ? Thunder strom with a lighting strike , maybe possibly desert storm , or tornado watch, if my depression + period is knocking then there's a call for Tsunami , good chance for them to evacuated.

 

[diamond]

Tipnatee...you explanations make sense but also filled with humour....lol have you ever thought about writing amusing poetry? I think you would be brilliant at it...even if it was on a serious subject!

If you were on TV..i could see you as a really fun character in a kind of black comedy show....i so often giggle out loud..not at the subject matter which for all of us is sad beyond belief but at the metaphors and quips in your humour.

 

[lyrin]

Okay, going back in the conversation a bit here.

I am 35 years old. Have a 14 year old son (that I absolutely adore). I have a full time job. I volunteer regularly. (over 45 hours in once of my many groups as of right now) . Otherwise I have as much of a social life as I can take. I take the kid to practice for his after school club (robotics related) and have even volunteered to judge the competition on a few occasions. This year I've been kayaking all over the place. Hikes are too much for me right now but I used to. Hell, I used to run 2 miles a day before all this started.

Looks great, right? Someone with severe fibro may be jealous of that.

Now the not so great parts.

I am *takes breath* Bipolar (with psychotic features), Autistic Spectrum Disorder, ADHD, Generalized Anxiety Disorder, Poly Cystic Ovary Disorder, thyroid problems/disease, and herniated degenerated disk which causes me a lot of pain. Apparently since all my symptoms weren't explained by that, I'm now listed fibro. I'm probably forgetting something. I'm on 9 medications currently.

My son is Autism Spectrum Disorder and ADHD. Did I mention I've been a single parent since my son was 4?

You don't see the pain I feel getting out of bed nor the fatigue/fog which makes me forget specifics of most of my drives to work as the Concerta kicks in. You don't see the days I'm pretty much too depressed to move. You don't see me go to bed at 6pm to get up at 5am. Or see me sleep most of the weekend because I'm so exhausted from the week. Like 16+ hours. Because of a medication mishap yesterday everything hurt x3 and I felt a sense of impending doom and soul crushing despair all day. But I look okay. And I spent years dealing with unmedicated bipolar and anxiety. From about 15 to 30. I had to literally fight to stay alive I was so suicidal.

It's not all roses over on this side either. And I know I could end up without all this.

I have an extremely high pain tolerance. My many experiences have made me hard as nails. My life has been one fat, giant road block after the next. If someone had to have fibro I'd prefer it be myself than someone who cannot handle it. Each person has a level of pain and coping. I earned mine over a pretty crappy life.

Right now I'm sitting at work and my left knee is on fire. No one knows. I'm just trying to ignore it.

My life is not one to be jealous of no matter how it looks on the outside.

"Each one of us fights battles no one else can see" -Assemblage 23