In a crash, I am a mess...

[Misfit Toy]

I am hoping if I write this, I will sleep. I am exhausted. Happy New Year's. This past year, 2014, was one of the worst in my life. May 2015 be better.

I am in a severe crash. Since stopping the Plaquenil and Topomax, which helped my sleep and pain, I am sicker than a dog. Every day is an absolute yo-yo for me. I am not sure what to do or where to go from here. I can't sleep for one. I slept on those meds. But, I can't live on a med that gives me headaches.

And now my muscles are jumping all over, but I don't want to drink magnesium. I am frightened I will throw it up. I am so tired of medicine, whether it's holistic or regular. I don't want to swallow one more thing.

My surgery is in 11 days. I wonder how I will be after. I have a week and a few days to get ready. I won't be able to type with 2 hands. I will be a mess. If I am bad now, I will be worse. It will put me in a total crash. I can't think of working this spring as I just feel that the surgery will totally set me back.

I am exhausted. I came home from going to visit friends today because I am alone all of the time and I made myself go out today even though I didn't sleep a wink last night. I woke up exhausted and like what was that? Was that sleep? What was that? I woke up every 2 hours and was in pain throughout the night. I couldn't even get up until after 2 pm today. I was so exhausted and when I woke I felt like where am I and why am I feeling so poisoned? I dissect all that I ate yesterday and all that could of done it was drinking Tonic Water. I am not sure.

There is no rhyme or reason to this thing. None. I go on the Sjogrens board on FB and I feel so disconnected from people on there. They can take the meds, some can exercise and some have no pain but more of the salivary issues and eye issues. I go on the CVID board on FB, they are all dying, or sick from infections. I go on the Fibromyalgia board, they are all in so much pain and tired. (I can relate to that.) But so many are doped up, angry, can't spell one word right folks and I think....do I fit in here? There is so much drama on that board and many are train wrecks. I know that sounds awful, but many are hardcore drug users. Or, alcoholics that are a mess.

It's sad. Depressing.

I come on here and many people don't have the pain that I have or the other diagnoses. Where do I fit in? I don't, but yet I do on here. I fit in only because I am comfortable here and feel like I have a more intimate relationship with people on PR. Thank you.

I am just tired, a mess. I am worse since stopping the meds for Sjogrens, but I went off them because they were making me sick. I am worse than before I started taking them. My brain is a mess and yet the very meds that I take to help the brain, make me sicker or feel drugged.

I am expecting to just be indoors this weekend because I am not sleeping and without sleep, I am useless. Here's to sleep. Maybe getting this out, I will sleep. I can't cry. I am too tired to cry.

I am tired of fighting. I am tired of this illness. I don't know how many of us do it. It's relentless.

I am praying. That's all I can do. I am praying that God, or whoever is above can help me. I need this yo yo to stop. I need my body to calm down. I need some sleep and for the pain to ease up. Please, up above, help. Give me some regularity instead of this crazy hell. I can't take it.

 

[heapsreal]

Can I ask why you came off the topamax? Guessing coming off it can have withdrawal symptoms.

It's a strange world when we live day by day ,unable to really plan anything ahead. To feel like crap is one thing but to crash and feel crappier is a whole different level of crap, just when you can't think it will get any worse.

It would be nice to have some type of treatment or resurrection when in a crash but all we can do is wait it out. Valium sandwich helps.

thinking of you,
Good luck,
Cheers

 

[Misfit Toy]

Thanks, @heapsreal. I came off of the Topomax because I stopped sleeping on it. It helped tremendously with pain, but I wasn't getting to sleep until 6 am and my rheumatologist said that it could do that. Once I stopped it, my sleep was better in that I was not up so late. I was wide awake after taking it. In the beginning, it knocked me out.

This is a strange world. I feel drugged, like my memory is a mess and fog has taken over. I don't even think fog is the right description. It's more like smog or swamp going on in my brain. So sick. Blocks of time are sort of lost or something right now.

I came off the topomax November 29th. So, I was only on 12.5 mg for 2 months....not sure if this is withdrawl. I have no clue. Going off the Plaquenil has been the real down for me. I had that massive headache but I was sleeping on it. Now, I can't sleep for you know what.

 

[heapsreal]

That's a small dose of topamax, I wouldn't think it would be an issue?
I don't know much about plaquenil, maybe it was controlling inflammation.

I know what you mean about pills. How bodies are so mixed up but we are trying to control every individual function because it's out of whack.

I have often wonder if during a crash if it would help to be anaethetised for a few days and our brain to be switched off and allowed to recover or synchronized. Sounds great in theory??

 

[Misfit Toy]

@heapsreal -the Topomax isn't an issue, but yes...plaquenil was controlling inflammation. It does that.

I want to be put to sleep. I feel like a bunch of over active nerves and neurons right now. I'm exhausted but my body is jumping. Knock me out!

 

[WillowJ]

sorry it's so rough. Sending hugs and praying with you. take care.

 

[Michael_venice]

I don't fit, either... I fit a little here, a little there. Very sick, but not dying, don't have organ failure. But seem to be more disabled than many, pain + very, very sick. No good answers. I'm very sorry about your crash, and hope you get out of it and soon. What you wrote, how you wrote about where you look for people to relate to, where you fit...that really hit me tonight.

 

[Revel]

So sorry you are suffering in this way, @Misfit Toy. Thinking of you .

 

[Misfit Toy]

@Michael_venice -I'm sorry you are also sick. It sucks this not fitting in feeling. ME folks are most like me because they are so ill from so many meds, etc. and really ill. I feel to blame for my illness. Like, I must be doing something wrong. People talk on the Sjogrens board about quitting sugar, gluten, etc and they are so much better. Why aren't I? I don't eat gluten, milk, soy, etc. My inflammation is no better for it. I'm sorry, but I want a piece of chocolate.

Anyway....

@Revel, been meaning to get back to you. Been too unwell, my friend. To better days ahead for all of us.

 

[Revel]

@Misfit Toy, no worries. Will drop you a PM later (if our internet holds ). Take care.

 

[ahmo]

So sorry to hear. Sending you a heartfelt virtual

 

[taniaaust1]

@heapsreal -the Topomax isn't an issue, but yes...plaquenil was controlling inflammation. It does that.

I want to be put to sleep. I feel like a bunch of over active nerves and neurons right now. I'm exhausted but my body is jumping. Knock me out!

I know how that one feels as I get like that sometimes (I used to be like that all the time). I know you dont want to take any more pills but not being able to sleep is the pits and makes one so much weaker in dealing with everything else. (I often feel like screaming if I have to look at another pill)

Im wondering if you've tried Doxylamine succinate (an over the counter anti-histamine which can work great at knocking someone out to get some sleep).

Also combos of things can be useful too.

I am tired of fighting. I am tired of this illness

I just finished doing a pm to someone saying exactly the same thing. You may feel like you dont fit, but you do.

 

[anna8]

Hi misfit, I feel just the same, I feel the longer I have this awful condition the more I feel disconnected with the world!
Without the net I would be invisible I think!!!
Hope you operation goes ok! Hope it's not too serious!
Bug hug!!

 

[soxfan]

@misfit...I don't seem to fit in anywhere either. I have just begun my 11th year with my mystery illness with no relief in sight. Sometimes I feel just borderline okay and others I can't leave the house. I have extremely painful nerve pain in my calves and feet which can be shooting...burning...stabbing...electrical currents. My feet often feel on fire.

I have fatigue no matter what I do or don't do but gets much worse with mental activities. I know I don't have to explain the feeling of fatigue to you. I wake up in the mornings after what seems like a pretty good sleep only to feel worse than when I went to bed. Somedays I am back laying down 2 hours after I get up because I just need to.

I do take .025 of Klonopin at night but am not sure it is really needed as sometimes I fall asleep quickly and other times not.

My body inside is always wracked with adrenaline or high cortisol like feelings...I can't ever sit still or else I will feel like my insides are going a 100 miles a minute and my legs get much worse. I am also acutely aware of my heartbeat which often feels like a pendulum swinging in my chest.

I am on the Lyme sights frequently looking for anything that sounds like me and sometimes there is a glimmer of me there but mostly I can relate to what is going on with everyone here.

I can relate to your pain in the fact that I have constant nerve pain in my calves which is sometimes unbearable. It definitely could be a factor in my poor sleep quality and I need to look into getting some Neurontin.

I can still do a lot of physical activities with no repercussions. Each day when I get up I never know how I will be feeling....

 

[Tammy]

I am a woman of few words.......just know that we can relate and the rollercoaster can be too much too often and we pray to God to get off that rollercoaster. Yet.............here we are again and sometimes all we have is each other................sending you caring thoughts and many heartfelt hugs.

 

[NK17]

So sorry to hear about your crash and suffering @Misfit Toy, I really feel for you and understand where you are.

Unrelenting physical pain and lack of sleep are horrible symptoms, my only hope and wish for you and everybody here on PR is that we can find some creative ways and sympathetic doctors that will help us manage our symptoms and above all forget about labels and diagnoses, just for the sake of them. Wouldn't that be great? Being seen as a suffering human being and being helped?!

The fact that you feel that you belong here amongst us, is of small consolation, yet a very critical one. Belonging is very important and not being judged is even more important. You can be your true self here, vent and rant and we'll understand and make you feel at home and less lost, less alone.

I also would like to wish you a smoother recovery from your impending surgery and send you all my best and most positive thoughts.

 

[GracieJ]

So sorry, @Misfit Toy . I hope your surgery goes well.

I went through a bad crash with the fall, and have not felt okay for weeks. It seems like you have to hit a real low to get the velocity to come back up out of it. I think I am beginning to do better, but as with other crashes, it is difficult to determine cause and effect and what can be done to end the tangent. Sometimes it is just riding out the storm. In my case, I know running out of key supplements was a big piece, and my body is letting me know in a big way. I would have them again if it were not for a little thing called Christmas. I just could not say no to buying gifts but probably should have.

This sounds odd, as I know how rough surgery is, but maybe it will interrupt the current trend. It will not be easy, but here is hoping it puts you on a better path for a bit and gives you a break in a way. Find the eye of the storm! You need it.

Keep breathing!

 

[brenda]

Hey misfit, I am sorry you are going through such a tough time. I would delay surgery for the moment. All of those chemicals are what you do not need atm.

 

[justy]

Hi Misfit - so sorry you are feeling so low, and that the surgery is coming on top of that - I hope it goes ok.

This has also been a terrible year for me, pretty much the worse one so far. What frustrates the hell out of me right now is not being able to tolerate the meds that have been prescribed. I know that I need to take them to start feeling better, but my MCS has got so much worse this year that I seem to be sensitive to everything.

I JUST WANT YOU TO KNOW YOU ARE NOT ALONE - even though we are separated by physical space and have never 'met' in the 'real' world I know that I an many other care about each other here, and I think of my PR friends often.

xx

 

[Misfit Toy]

Thank you for the kind words, everyone. Last night I put on a Fentanyl patch because I was in so much pain and 90% of the time Fentanyl an make me sicker yet this time it worked...go figure and I slept, which I NEVER sleep on Fentanyl. I am grateful and yet so baffled. I just don't get it. Fentanyl calms down my pain but usually makes me quite sick. It's so weird.

@justy -you said it all. I have MCS with my meds. That is what is holding me back. The very meds or supplements can make me worse. Fish oil causes my pain to go nuts...ugh. I am on the Sjogrens board asking people or just watching what they can take and I am stupified with all that they can take or handle. I try the same meds and have horrible reactions or feel so unwell from them. Or, the very supplements they offer make me sick. It's so frustrating. And yet, I can wear perfume here and there and handle a lot, but anything I swallow..not so much. My body turns it into something else. But meds for Sjogrens are all immune suppressants which I don't feel are good for me anyway.