LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I am just having a bad day. I started some new supplements (from my genetic person) and I am not sure if it is a thing from that or what,
but I feel so depressed. and last night I got the call that i have osteopenia. like I need another thing to worry about?! all I feel like doing is eating.
I tried talking about everything to my sister but she doesn't understand. sure, she has had lots of things pop up physicallly in her own life, but no lyme.
no daily pain pain pain. how can someone tell you to "find the good in each day" and never have pain.?
can't I jsut have one day to cry about it is it so bad for someone to need a "awww, its ok, you have so much to cry about" for once ????
why do I have to be strong al the f-ing time??? I don't feel like being strong today. and I need someone to tell me its ok.....
that my life isn't roses and ponies and it probably never wil be, but--- there is a but there, right?? I mean now that I can fall and break by back don['tI have a right to be sad and upset without a lecture?????
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I'll be your shoulder girl.
You are not yourself because the pain is changing you into a shell of who you are. It is taking its toll on your body and mind.
You must address how to lower the pain. I bet if I could see you right now, I would see pain all over your face. You poor thing.
Do you have a pain management Doctor ? Would your primary prescripe you something ?
Other fixes, Epsom salt baths, turmeric capsules, magnesium, Cold or hot pack on painful areas, lidocaine patches, OTC meds, or just a close friend who has a sympathetic ear ?
Also, when the world is weighing you down, I escape by listening to upbeat music or watching comedy movies. Anything to take my mind off of myself. It's hard to do. But even 1 hour away from the pit of despair that Lyme brings, will make a difference.
Once I even hopped in my car and went and got a cup of coffee. While I was in the drive-thru, I bought the next car a coffee too. I knew that a good deed would make me feel better about myself. Just little things, baby steps, day by day, to promote healing.
Hopefully things will turn around soon, take care of yourself.
Posts: 2970 | From Florida | Registered: Nov 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I was thinking about you yesterday and wondering how you were, Lisa.
Tell us what's going on .. besides feeling especially crappy and down?
I can tell you that herbs make me depressed. Anything high in salicylates can do that to me. It can keep me awake all night and then depressed in the day. Avoidance is my only solution.
LET IT OUT, LISA!~!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Sometimes you just gotta vent or you'll implode!
One time I hit bottom from family problems and went to the liquor store and bought a bottle of something. Drove to an isolated spot, got drunk and had a screaming hissy fit with God.
Physically I felt like crap the next day but better emotionally.
That's what helped me in a dire straight.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6105 | From Columbus, GA | Registered: Jul 2004
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
wow thanks everyone. I am so grateful.
I love john denver!!!
Lymetoo, thanks for thinking of me
I really don't feel wel lat all. 1/2 my drs say I donl't have any lyme (due to neg eliza)and the other half says all my sx are from lyme and it will never get better than what it is.
im in so much pain all the time. no one understands. my best friend is busy with her dying (cancer) husband and my husband and kids are not the nurturing type .
my mom lives very far and she and my dad are so old and sick and I can't hardly see them.
my siblings don't care about anything. they are busy. im trying to think or not think about my future and what it will mean. trying to stay positive but its so hard! when you have pain
24/7.
I can at least read again, but I can't retain still enough for any of it to help me. as soon as I read a helpful thing or hear it, it is gone the next day or sooner. and if I write it down I forget to look at it.
so . I have ongoing nerve damage in both arms/hands and no one cares. I think it might be B12 or something? or intracranial hypertension making my brain bad, but
no dr knojws about it that I found or they say "you can't have that" and there is goes. etc.
I can' barely sleep. I can barely eat anything as most things make me sick I am thinking of another Igenex test, but what if that is negative!? I get
these super hot flashes that I think might be hormone related, yes, but they seem to be connected to my pituitary or something as they come when I eat food too.
but they wake me up at night and al through the day they torment me. they are sudden and feel like im going to die and the world wil end. that is how devastating they are. like I can se my death coming in seconds!
and then that leaves and a huge heat rush comes over me my entire body and then I feel like im going to explode and kill someone with my horrible anger or overwhelming animalistic crazed feeling.
thike a savage. and its so hard to even talk during this. it happens all day and is very disruptive. it feels like adrenals fight or flight, but no matter what ive tried nothing helps
Lymetoo, what are salicylates in ? I can look it up. I even tried going off of everything Im taking and things change a bit but get worse in other areas or something, etc.
aklnwlk- I can see what you did and as helping in that way. if I could drink id probably be right there! but I cna't drink any more. I get so ill from alcohol so im sure my liver is not right.
and of course nothgin shows up in regular bloodwork for any dr.
I feel better kjowing people like you all care and took the time out to write here. thank yo u so much.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Lisa .. Did you ever find out if you have EDS? You really sound like an EDS and MCAS person. Those with EDS often have trouble with salicylates as they cause degranulation of the mast cells.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
I was thinking along the same line TuTu.
I have nerve pain in palms and soles of feet.
Studying now for tests and have retention issues.
Have sleep issues, and heat and flushing from tea, coffee, alcohol and certain foods.
Some anxiety and easily flustered and can no longer multitask.
But....much, much better after being diagnosed with Mast Cell issues (MCAS) and starting treatment.
Might be something to check out LisaK.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6105 | From Columbus, GA | Registered: Jul 2004
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I can't find any dr who will listen to me. (why isn't there a crying Graemlin??)
how do you find someone willing to listen or even think of these things on their own?
I go to a genetic expert of some sort. he is convinced my issues are from either too much glutamate or too much iron. or the way I process iron or something.
but he seems to change what he is saying to me every time I go to him. but now that I think about it when I take his supplements I get terrible head pains. I think its that intracranial hypertension and I cannot stand it.
so MCAS? might be a cause, but the symptoms I have are for so many things! it seems like I could have anything wrong with me???
I don't eat much fruit at all because my body tells me not to eat it. I do eat some veggies but they are limited to because I do seem to not feel great when I eat them. but the genetic guy said that is my glutamate overload.
I am so confused.
I have noticed an increase in pains associated from ligaments I think. like for no reason my knee will feel like its giong to pop out of its socket or something.
but what causes that? I never had these issues all my life til now- except while pregnant which is common.
I have always been 'flexible" but nothing popping out of joint really for no reason. I do bruise easier now for sure too.
now I have more to fret about. how can I possibly get any of this stuff fixed when I have no dr???
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Lymtoo, that article says "one gene linked" but I don't see any gene listed.?? do you know the gene?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
could this be why my skeletal system is giong oout of whack? like when I sleep my jaw moves from my pillow and my cheek bones move and everything goes nutty and there is great pain.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You really do sound like an EDS person .. MCAS and POTS are kissing cousins to it.
If you will go to one of the Facebook groups, they will help you find a doctor. Don't go to just anyone.. it's like finding an LLMD .. only worse.
PS /.. I don't think they've found the exact gene .. but I'll ask to see if there are any updates on that.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
OK
sigh
this is so depressing
and yesterday my daughter told me that I am the most negative person she knows. I couldn't argue with that. I am miserable because I always feel terrible.
and my anxiety is so high that I can barely enjoy anything fun or happy. I have to force a smile and pleasantries.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Lisa, I found out that JAK2 is linked to Mastocytosis.
I know there are likely more unidentified genes.
Ask your gene person to check for EDS .. there are known genes for that.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I htought of that today, but my gene person is to into the whatever de jo0ur. he don't remember things from one time to next. I forgot he's like that.
I need to find now gene person. any suggestions?
im going to iridologist tomorrow. mayby she will see somethign . I itch so bad all over now. what the heck? yeast probably? but nothing is helping! ouch
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
lymetoo I woke at 1am and was putting symptoms in the symptom check (again) and MCAS did come up so I was readin gmore about it.
I do have a lot of sx for this, including some recent anaphylactic episodes- very small, but I was kind of shocked by them.
I do absolutely feel full of histamine. and was wondering if that could cause my itch????
I also remembered that I stopped taking my B12 as per my gene person and many of my sx are could be linked to that. I was taking tons of B12 and my level was sky high but still had symotomps anyway, just not this bad
I feel really crappy today but I htink im getting this cold/flu going around.
all I keep htinking is that im dying a long painful death and no one cares.
and now I see that you need a regular dr referral to even see an almost non existant dr for MCAS or any of the MAST things and I feel totally negative about that ever happening.
what do you do? go right into the drs office and ask for a mast cell disease test? they are giong to make it stretch out even longer.
waiting waiting im so tired of waiting. ive been waitnig my entire life to feel good. I just want it to end. my best friend just told me to stop searching and just live with it because we all die and have things to live with
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Well, you don't want to die from anaphylaxis .. esp not when it could have been prevented.
Go to the FB Mast Cell group .. the one that says Holistic in the name.. they have a list of doctors you can try.
It's fairly useless to get a GREEN doctor to do anything.
Avoid foods high in histamine.. that's a start.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I try and avoid the foods, but I can barely eat anything. everything I eat seems to give me a reaction.
and I can't stop itching for days now. im climbing up the wall. ill check the histamine list again-
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
and I will check out that fb page, lymetoo, thanks
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
lymetoo, is it the "naturally and holistically? or the 'holistic and integrative"?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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