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hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 38
   Posted 10/25/2017 5:54 AM (GMT -7)   
Good morning all, hoping you are all coping well.
I am having a terrible time. I didn’t sleep again.
I saw 2:30 last night. I just cannot get comfortable.

I have a terrible time with pain in my head when I lay down especially the back of my head just behind my ears on both sides...and my sinuses are just a mess.
And my teeth! I just can’t stop clinching and my jaw and face hurts so bad.
Is this ALL part of fibro? Am I nuts?

I saw my nurse again and she put me on antibiotic thinking it may be a sinus infection from chronic sinusitis.
Plus the pain in my neck at the base of my skull and spreading down the sides of my neck and down my shoulders is terrible.
I just cannot lay down and so just cannot sleep.

The Meloxicam just doesn’t seem to be working at all.
But it is upsetting my stomach.
The Baclofen does ease the pain but I’m a zombie.
What do I do? Is there anything I can do?
Or is this my life now?
How do you cope?
Thanks for being here.
Tuffymason

kodaska
New Member


Date Joined Aug 2016
Total Posts : 12
   Posted 10/25/2017 9:03 AM (GMT -7)   
Despite the fact that you have not answered my question in one of your recent posts, I am going to shed some light on health problems you are having right now.

Fibromyalgia is not a condition that comes from nowhere. It is a body condition that develops through the life, pretty slowly but steadily. It counts to dysautonomias (look under Dysautonomia International) meaning to disorders in functioning of autonomous nervous system. This area is relatively little known and the research work is underway in this past years. For now, there is not known medicament that can cure you, but there may be the change in the coming years. If you ask me, my estimation is that the cure may be at our disposal sooner than expected. I hope to have encouraged you a little bit and that the waiting will be easier for you...

Kodaska

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15177
   Posted 10/25/2017 9:37 AM (GMT -7)   
Hanginin, I do not know what mg of Baclofen you are taking, hopefully it is 5mg.. The zombie feeling should go away in a week or two. If you on a higher dose contact your dr & ask for a lower dose, or ask if you can cut them in half. It takes awhile for the Meloxicam to kick in & should be taken with food so it doesn't mess with the stomach.

I have chronic sinus issues have discovered that saline works very well for a nose spray. I can flush my sinuses out much better with saline, helps put moisture in the nose & washes out the pollens. It is inexpensive & I go through a lot, lol. I am having great luck with an OTC for my sinus situation.

I do not have Fibro, however I have many issues that have resulted in chronic pain for a good 30 years. I had to accept how chronic pain can change my outlook on life & the limitations. Myself & many others have learned how distraction helps, anything to occupy my mind other than pain. I stopped years ago starting my day thinking about how bad I felt just trying to get out of bed. By me doing that, I automatically set the tone for my day & it was not pretty. Instead I get up & not go there. I basically was shooting myself in the foot before my day actually started. Instead I concentrate on the things I still can do & remind myself quite often there are a lot of people in this world a whole lot worse than I am. Coming here to Healing Well & reading helps me keep a better perspective of things.

Have you tried Melatonin for sleep, this may be something to try. There is nothing in it to harm you. A friend of mine had been on Ambien for 13 years. Because of the hype her dr cut her off, no warning nothing. She took Sleep Time by Tylenol PM, without the Tylenol in it. Worked like a charm when everything else failed. I bought some & used it for 2 weeks & managed to turn my internal clock back on. I had been sleeping anywhere from 2-4 hours per night for years. It took a huge toll on my body because I was so sleep deprived. I now sleep 8 hours a night without anything. Anyway just wanted to give you some ideas.

I hope you get to feeling better. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 10/25/2017 11:11:15 AM (GMT-6)


Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 329
   Posted 10/27/2017 8:34 PM (GMT -7)   
Hi there. I don't know your full load of comorbid problems, but the ones you name, while associated with fibro, they are also possible symptoms of mast cell over reactivity. Mast cells are immune cells. I explain in a thread at myPatientMatch. Just search the word "reference", and you'll see Reference thread for sharing mast cell info. Probably onky want to read section one, maybe use the first link to see the symptom list. I link to some fibro/mast cell studies in the fifth section that begins "For the fibro patients...."


Meloxicam being an NSAID, it has potential to trigger mast cells. Every mast cell patient is not triggered by every type of NSAID, but the ones you can still use without problem, I suggest you might reserve for flares, and not risk losing them to over use. I can use 440 mgs of Naprosyn, and on a lucky day, get some help with some headaches.

Just as a quick example of proof, this mouse study showed Meloxicam as one of the NSAIDs that increased histamine, so that means mast cells were degranulating, or selectively degranulating, since they release histamine. /www.ncbi.nlm.nih.gov/pubmed/17321477

It sounds like the muscles hurting the back of your head are the occipitals. I fight those, also, and they are also famous initiators of migraine/headaches. I have to try and discipline myself to look down with my eyes, and not let my head hang down. The head weighs a lot if it's not able to rest on the spine. A lot of work for small muscles with problems. Sometimes a half-step back let's you look down with your eyes only.

There is an NSAID in a gel called Voltaren. Prescription in the US, but over the counter in some countries. I have in the past ***gently*** applied some to the occipitals. In general, my head muscles are freakazoids about being massaged, so be gentle. Some people's mast cells are very easily triggered, and sometimes it's just those in a certain area that tend more to misbehave. Perhaps there is even a different "phenotype" of mast cells? (For example, I believe there are at least 5 different phenotypes, or we could say location species, in the lungs.)

Yeah, you want to get help for that jaw clinching, if you can't make yourself stop. Maybe someone can teach you self-hypnosis, and then you can do some imaging work to help be more relaxed. I can get a song stuck in my head, and make myself hurt by thoughtlessly tapping out the beat with my teeth.

Or, if jaw pain gets bad, I would suggest a dentist who is a TMJ specialist. If you can get a recommendation, that would be best, to find someone who knows what the heck they are doing. There are levels of skill and knowledge to it, I have been to two. I had a TMJ dentist who made a clear acrylic set of covers for the chewing side of my teeth, and every two weeks he reground them, depending upon how my bite had moved. Tried all kinds of wearing schedules. Fibro can make that jaw stuff get pretty complicated, so try to get a grip on it yourself soon.
You can get injections into the occipitals by a pain management specialist, but sometimes you put yourself thru it and it doesn't even work. Better to do a good job of managing your body and how you use it.


I have lots of jaw issues. I could write many paragraphs. And I try to be so aware of muscles from my chest, that help move arms, and those in my upper back, and then the neck muscles. I get what I call "muscle creep, and over-use of any of those will creep up to the occipitals or the jaw. From there, other head muscles may join the miserable party. Talking too much was hurting, and I could not do some jobs. The dentist was a big help in my disability decision....one piece of the puzzle, anyways. That dentist also had me on a very soft diet for a while. Eventually got some control, but go to one company Xmas party and I would be right back there. I sometimes would revert to the soft diet in times of trouble. Sometimes my face would feel distorted by the pulling. That hasn't happened in years. It can get better, I promise.

My upper back has a slight curve forward. That makes the head jut forward a tad too much. I got a simple, easy exercise at physical therapy to just retract my head (makes a double chin) for two seconds, then relax. Do that 10X. A few times a day. (2-3?) After about a week or two, then you can also push the head back a tiny bit tighter, by using two fingers pushing gently on the chin. I used to do the head retractions sitting at traffic lights, or anywhere else.

Sinuses, unless something else is involved, is prolly mast cells. Might contribute to face pain? And I can't fix the problem for myself. Perhaps if I had decent insurance and could afford prescription mast cell stabilizers. But may as well mention that I have seen mast cell patients also have mold in their sinuses, or a pathogen. So of course as immune cells, MCs get in on that! (And we are assuming you have no structural problem like a deviated septum.)

XXXXXXXXXXXXXXXXXXXXXXXXXXX edit
I carry a tiny purse, and wear it cross-body, keeping the weight on the outside of the opposite deltoids/upper arm. So off of the trapezius muscles.
XXXXXXXXXXXXXXXXXXXXXXXXXXX edit again
If it's worse for periods, you could ask your Dr or gynocologist for progesterone troche'. A compounding pharmacy makes them. A soft lozenge I would use as needed for higher pain of any kind, mood, headache, general period pain. My sister needed only one half of a troche' at my dose, or she would get shaky. (She saved money by cutting them in half, I suppose). Mast cells can cause mental issues, as well.

Since finding estrogen receptors on bladder mast cells, the thinking is that maybe estrogen affects mast cells when there is estrogen dominance. Dr Theoharides thinks it could explain more women than men having fibro and ME/CFS. Might explain how a bit of testosterone can help some men (....tho some testosterone can turn into estrogen)

Post Edited (Rockon) : 10/27/2017 10:05:21 PM (GMT-6)


Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 329
   Posted 10/28/2017 4:19 PM (GMT -7)   
Maybe I should have added that Dr Theoharides has written that histamine "enhances wakefulness". I responded just recently to a question about sleep, with some histamine info another forum...😁yeah, sometimes you can catch me hopping around, ...every so often. www.mdjunction.com/fibromyalgia/what-seems-to-work-for-your-pain-and-sleep-disturbances-q11803014#11803425

hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 38
   Posted 10/28/2017 8:08 PM (GMT -7)   
Thanks so much for sharing.
I have been explaining allot in the short time I have been here.
I am humbled at not only your inclusion but your generosity to listen to it all and compassion to share what you already know to
help little old me to feel better. You guys are awesome.

I want you to know that although it is true I have allot going on, like many of you, that I also know it’s normal for this kind of illness.
I have dealt with other facets of it for years and years.
I have always been accepting and had the attitude “why not me?”, and “I’d better get up and get going because tomorrow could be worse”. Also that I know how lucky I am, there is always someone who is dealing with things that are so much worse. In fact often what has made me feel better on not great days is to offer help to those same folks.

I guess this last year with the ITP and the learning curve about the problem, the proticols and treatments, along with the high dose prednisone which is so very difficult. And the chemo I guess.
The deconditioning of my muscles from the pred and the subsequent
muscle injuries and inflammatory flares all ending in this whopper of a fibro flare.....so more learning....has me wanting to sprint to
a well informed finish instead of the slow steady day to day learning curve and trial and error.

That’s me everytime....let’s fix this I’ve got tulips to plant!🙂
I suspect too that this kind of idealism is also a protective mode of thinking as if I sit to long studying all this stuff no matter how important, dwelling one might say...it would scare the biggebers out of me!

Two weeks ago I walked into my emergency room asking for pain relief, big time. I never do that. Things were very bad and that made me so confused.
Tonight I write to you from a hotel room 4 hours from the familiar safety of my own bed. Visiting our sister. Yea, I hurt some and I will be tried maybe for a bit but have had a great time with my three sisters nephew and our fellas. Good wine, good food, good
times. I am so proud of myself and feel so lucky.

I find it harder and harder though to want to deal with the research and the learning curve. Oh what it must be like to never have to consider one’s health as a variable in everything I do.
It’s tiring on it’s own isn’t it?

But you kind folks have helped me just as you have done making it much easier and then I’ll know fibro too....
Have a great nights sleep and a beautiful morning.
Tuffymason

Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 329
   Posted 11/14/2017 3:08 PM (GMT -7)   
I was rereading your last reply and thought of something to add. There are people for whom steroids and mold in the environment are a very bad combo. So if there is the possibility that your home is moldy then I hope you can find a way out of it. Especially while using Prednisone. (and since I am in a hotel right at this moment, I promise, many hotels are moldy. I am so lucky that I complained 3X that I *Must have a room change ---"we don't do room changes."--- and I ended up in a room in another building with a window I can open. Ahh....the lie {ignorance?} at check-in. "We don't have windows that open.".)

In her blog Brain On Fire, I believe it was Dr Mary Ackerley that first made me aware of the problem of using steroids while exposed to mold. I have since seen patients at myPatientMatch write that the two together did them in,. I have seen it in mold groups, and mast cell patients can need steroids in bad flares, and the topic has come up in those groups as well.

You have prolly been home a while now, and hopefully it's a good environment. I hope you are improving!

Post Edited (Rockon) : 11/14/2017 3:11:41 PM (GMT-7)

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