"Venting" Area

Hi I am experiencing the same pattern of stress and then FM symptoms I have to really change my lifestyle and I seem to be trapped in the stress cycle .

Hi, I hate the damp cold weather.That seem to be the time that I really feel my Fibromyalgia the worst. But, I also will not let Fibromyalgia and other problems keep me in bed. That is the worst thing to do, as that is what I used to do.  Now, I get up and do as much as my body will let me do around the house. I may suffer, but at least I am being productive at something and not feeling like a total failure. I have come to grips with my Fibromyalgia, I just have to get my daughter to believe she isnt a failure because of FM and Endometriosis,which puts her in a lot of pain everyday.

What I hate the most about Fibromyalgia is that it is so sneaky.  New symptoms appear out of nowhere when you least expect them. Also, other people can't really see the disease.  You look fine to them.  I've heard that hundreds of times.  So I have a tendency to overcompensate. and try to look fine because I am so tired of explaining why I am not. Of course, that results in my feeling worse that I did when I started. I wake up locked up, and stiff every morning.  What comes next I never know.  I could be a devastating migraine, brain fog , fatigue so bad I can't walk across the room, muscle spasms, then let's not forget the ever constant pain.  But I look good and that's all that matters!

I HATE DOCTORS! Well, I hate the one I'm seeing at the moment. He first put me on Amatryptilin because I wasn't sleeping at night. I would go days with sleeping maybe 4 hours a night and then a quick 15 minute nap in the afternoon. In August he put me on 75mg and after I still wasn't sleeping so he upped my dosage to 150mg. I am finally sleeping but it isn't all that it's cracked up to be! I wake up in middle of the night to go to the bathroom. First I have to spend about 5 minutes to get my eyes to adjust because all I see is black and white fuzzies like a TV that is on a channel it doesn't get. I also see things in the fuzz like one time I thought I saw a man standing in the doorway, I thought my husband was sitting up in bed when he wasn't, sometimes I can't even tell if he is there and I also think my cat is way bigger then she is... once I get my eyes somewhat adjusted I get up so I can go to the bathroom and imediatly have to grip something like the side of the bed because my muscles are to weak and shakey to support me. ALSO, I have been haveing a lot of nightmares lately like, giant killer ants in the kitchen (I'm alergic to ant bites) and zombie-vampire circus people (which was a really graphic one and there was blood everywhere and I don't even know where my brain came up with that...I don't even watch shows like that, I prefer cartoons like SpongeBob...nice, colorful and cheery!).  

Since my dosage uppage I have also gained 10 pounds, in one month, and have a decreesed appitite and I exercise. He told me that weight gain was normal for these pills and breast growth was also common. He said he knew one lady whose breasts got so big that she ended up getting a breast reduction...I'm like yeah my chest is big enough all ready thank you very much! I was a 34DD and now in one month am a 38DD

...I've also been haveing horrendous cravings for sugar, which is so unlike me, even when I was a kid I could make my halloween candy last till Christmas, my Christmas candy last until Easter and so forth, but now I'm like "why don't we have any cookies in the house? Oh because I ate them all." I'm trying by best to ignore it because I know sugar is bad for me. I have reactive-hypoglycemia which I will get to in a second. So, to solve my problem of weight gain he told me not to eat so much. And only eat when I am hungry, don't socially eat and don't eat when I am stressed which I flat out told him that I usually  have a hard time eating when I'm stressed out and I don't really like to snack either. So he just said eat when I am hungry he also suggested to eat a peice of hard candy when I have a sugar craving...well, thats kind of a problem because if I don't eat, especially if I eat something sugary and don't eat a meal I pass out. I have a history that dates back to when I was 10 of passing out because of my hypoglycemia. I learned to eat high protein foods, at least every 3 hours and to avoid as much candy, ice cream, cake and whatever else as much as possible. 

So here are my thoughts: I can continue to take the pills so I can continue having vampire-zombie trapease artists chase me with blood spurting everywhere or I can not take them and not sleep.

I can continue taking them and become obeise since I am now 15lbs over weight and save up for breast reduction surgery, or I could not take them and not sleep.

I could only eat when I'm hungry, which I never feel hungry because I have no appetite these days, and pass out driving to school or at work, or at the store etc. because I haven't eaten and thats what happens when I don't eat, or I could not take them and not sleep.

What would you guys suggest?

I do know a few things. I need a diet change. I know how to eat healthy and I generally do, but I need to eat more good foods and less bad foods. what do I consider bad? I don't know...I know I need to stop eating out so much. I need to lay off the breakfest burritoes, eat more veggies...I've been posting some pretty good recipes in the nutrition section, so maybe I need to come up with meal plans, and cut down my portions. Any help and advice to do this is greatly appreciated....I should have Mardy make me my own thread so we can keep tabs on all of this...it might make for a good book some day!

Another thing that I need to do is cut out soda's completly. I've been struggling with this for a really long time and have basically just given up on it. I drink the worst possible thing in the world also. Diet Coke...I knew a girl in high school who was hospitalized because somthing in the sugar in Diet Coke basically ate her stomach alive. But did I quit drinking them then? NO, if not I drank more and I drink 1-2 a day. The less Diet Coke I drink the more coffee I drink which in turns makes me very shakey unless I have a high protein meal since coffee for some reason triggers my hypoglycemia. Which sucks, 'cause coffee is yummy! And it makes my morning headache go away (which the Dr. told me was just tension headaches). 

Anyways, I need to take deep breeaths and calm down...and go to Spanish class..........My Dr.s are lucky my husband has video games where I can kill people so I don't take out my anger on real people!

PS: I'm so mad I'm not even going to spell check...sorry

Jen - First and foremost -- goodness you are funny!  I know you were all whipped up (all puns intended), and naturally I'll do my best to give some feedback seriously, But you had me both laughing and crying. 

I'm sorry that you are having to go through this.  I'm sorry anyone has to -- I'm sorry I had to too, in years past.  It's part of the reason I was so committed to doing Lumigrate when I realized how many people just in Grand Junction wanted the progressive information that all the providers you see on Lumigrate.com were speaking about they just overwhelmingly were not able to come -- tired or it was too dark or too hot or ..... they had Spanish class.  Once, Cheryl Young was to present and she was even sick (but she sent Chris Young and he so enjoyed giving the talk to the group that night that I think it might have been what inspired him to prepare and submit the 'Adverse Childhood Experiences and Chronic Pain' seminar we now have in production.  

Many, many thoughts for you -- I'll try to be half as funny as you were:

• Not that I'd have any personal experiences, but what you're describing is happening to you as a side effect of medication sounds kind of like what I might have once heard someone say happened to them when they took 'magic mushrooms' in college.  And I recall having been sent a drink a couple of years ago when out with my sweetie and I just did NOT like the ginger taste of the ginger ale in it and went home and when I closed my eyes I was hallucinating!  I asked Dr. Lepisto and he said that is a classic symptom of a reaction to an artificial sweetener or coloring and ..... remember that I didn't like the taste of the drink?  Well, I'd noticed it was awfully dark. ... for a Moscow Mule that has just a ginger ale in it, ... it was very dark.  Glad that when we were up on the dance floor and the rest of our group had left for home the waitress had thought we also left as I probably wouldn't have wanted to let something go to waste.   Generally, if it walks like a duck and it quacks like a duck ........ don't eat the duck.
• I encourage people to go to the part of the website called Your Stories About Your Fibromyalgia and read what others, including my own story, have to say.  I put that in there on Fibromyalgia Awareness Day ... ironically the first of many nights now I've stayed up working til the wee hours for a good reason.  I had hoped that by having what I'd done kind of spelled out in terms of what has worked for me, it would help others like YOU, Jen.  It certainly is just what has worked for me after lots of trial and error and if it makes you feel better, ten years ago I was having as rough a time as you are with a medication side effect AND I was having to drive about 3 hours a day on average plus work about 10-12 hour days.  Yes, my health deteriorated bady.
• And my bra size didn't get bigger.  Well..... hold on, they DID, as I went from being 140# to 190# in two years.  I didn't have any opportunities to go out socially (every other weekend I had an aging parent to visit who had land and meal set up needs) but I remember the first time I did go out after doing that job for two years and I had more offers to have a drink sent my way than when I was 7 years younger and my  former 13% body weight self!  But gads what a pain in the neck!  So I commiserate about the TaTas as Tammy called them in her facebook PSA about getting your breast exam and mammogram in October.  
• I had many doctors over all these years not test my thyroid correctly and one even say to me 'it's calories in and calories out'.  .. and none teste my thyroid in the manner that Scott Rollins' seminar would suggest.   My second alternative-thinking MD had me in for my quarterly appointment my first year over here and we were so focused on my sleep, pain and fatigue progress and dilemmas that he didn't feel my thyroid.  This is the same MD who initially in 1998 had asked me if I had pain and at that time I would call what I had in my shoulders and neck 'tension', thought they were rock-hard.  Luckily at the END of the appointment he did a quick thyroid palpation and when he touched my shoulders he said 'these are hard as rocks and you say that doesn't hurt?'........  And ONLY then did we get to an understanding of what one defines as 'painful' and then if you call 'that' painful, then yeah, I had pain in enough of the points to declare it was fibromyalgia.  Which was helpful in terms of then knowing what to research and from there what to take.   But that year it was not him but my massage therapist who I saw literally the next week who could see the mass because of the lighting and angle of being above my head and she refused to set up more massages unless I had made an appointment to go back to the MD ..... (yes, MT is part of that Team on the YOU model on Lumigrate.com).  And then the MD felt the thyroid and then ran some progressive tests to tease out what it was.  He's a brilliant doctor who thought of a lot of things over the years for me and knew a lot of things that were VERY progressive for here, but I've written about him about a month ago and we're apparently in a position now where he thinks he and his staff are not needing to see me anymore.  I'm inclined to think he and his staff have some learning to do about the model that each patient is best served by having unlimited valid resources to draw from.  So, basically, it's always a process of finding new providers and getting rid of the old.  Someday we can hope that it's like the pharmacy here at the grocery store .. where they don't remember by name anymore because they haven't had to fill a Rx for so long!  (I get the regular bioidenticals from Walgreens which has a compounding pharmacy here -- one of 50 in the nation!). 
• That hypoglycemia stuff in childhood.  Important detail.  Adrenal fatigue book, which I blogged about in the past, has something about that perhaps study up on celiac at some point.  There also might seem to be a head injury / concussion before any of these 'hormone' things get off -- and remember insulin and blood sugar and all that ties back to the brain and the pituitary and hypothalamus, as does thyroid (if a person had watched the Hypothyroid video by Scott Rollins that is covered in that).   Maybe information on celiac disease (gluten sensititivity) .... the "Food allergies" video might be of help to you, as it covers that at the beginning and likely would tell you quite a bit. 

Again, it's a process ...... and again, I'm sorry you are having to go through all this ....  and again you are funnier than all get out!  And THAT, is a great skill to have because if you have your sense of humor about these things hopefully it helps you get through all this stuff!  And then if you're like me, you'll hit a place like I kinda sound about like you today ('riled up') and I decide I'm somehow going to put more effort and resources to the solution and .... it pays off!  I got a good combination of ticked off and scared the other year and decided I was going to break down and buy a new bed and then be in it for 8 hours a night like my doctor was telling me over and over very patiently was statistically what it took to get better.  I then also took the Rx for a higher dose of sleeping medication and that ended up having some consequences but for me the benefits outweighed those consequences.  (I had withdrawals and a pretty rough time when coming off of the narcotic for sleep when Lunesta came out as I was not titrated and switched to a shorter-acting one if I'm remembering what I researched in those very VERY uncomfortable days.)  Medical providers are busy ..... just like everyone they are on information overload and it's just my opinion that we all need to do our best to put on our thinking caps -- pick a good team around us and then really and truly, learn that deep breathing and practice it and every day spend time centering and checking in about what all we're doing with our health so that WE are paying attention as best we can to ourselves.  Hope that helped.......

Have you taken the free symptom analyzer over at Dr. Ts website?  Link: www.endfatigue.com

Here are the links for the stuff you and others reading might want to check out at Lumigrate:

Blog about downloading (it's easier than you'd think!)

www.lumigrate.com/blog/how-get-video-lumigratecom-documentation-comes-easy

Video: Chronic Illness: Full Barrel Syndrome ($0/free)

www.lumigrate.com/product/chronic-illness-full-barrel-syndrome-dr-christopher-lepisto

Video: Food Allergies (by Christopher Lepisto, Naturopathic Doctor):

www.lumigrate.com/product/food-allergies-dr-christopher-lepisto

Video: Health Management (Paradigms, etc.) by Chris Young, Pain Management Psychology Expert

www.lumigrate.com/product/health-management-dr-chris-young

Video: Hypothyroidism: Misunderstood, Misdiagnosed.... Missed!

www.lumigrate.com/product/hypothyroidism-misunderstood-misdiagnosed-missed-dr-scott-rollins

Jen darling,

Holy cow woman!  First things first, is there another doctor you can go to?  This one doesn't sound like he's on the ball.  You, on the other hand, are absolutely hysterical, have your brain together and though your flustered, frustrated and fighting mad your treating everything perfectly with a sense of humor; I'm proud of you.

Get rid of the soda kiddo!  I know it's hard, I know it tastes good, I know what it does for you but it's not good for you at all and might be part of the problem.  I'm not talking about the caffeine either, although I'm not one to talk since I'm a coffee drinker, but the caffeine isn't helping; the fake sugar is probably doing some funky things to your system.  If it's the bubbly thing you're looking for, switch to selzer, there's even flavored selzer.  Oh, by the way, NOT club soda since that has salt in it, selzer - or as we say in New York SELZA!

Caffeine is an issue for us, and yes, I'm bad about this too but try switching to tea.  Regular tea to start with.  It also has caffeine, as matter fact more than coffee usually so you'll only need one cup of it versus the two cups of coffee you might drink and tea comes in different strengths.  Here's the difference, the caffeine in tea isn't as readily available to your body therefore, you might actually be able to wean off caffeine slowly.  The whole idea is to not stress your body nor yourself out more and be like your cat when she gets scared.  You're husband won't know what to do with either of you!

As for the sleep thing, let's talk.  I don't know what you can and can not take but listen babe, I've been taking Tylenol PM and it works great.  No Vampire nightmares, no shadows, no larger than life animals, no misplaced husbands (though sometimes that wouldn't be a bad thing), and no increased breast sized, though G-d knows it might be my husband's dream that's just too bad!  So what's in Tylenol PM?  Benedryl.  It's Tylenol and Benedryl.  Hint hint, wink wink.  Get a clue, over the counter, store brand works too.

Now, as the fat lady of Palm City, Florida I'm the last person to give advice on diet BUT (and I have a big butt), there are fruits when they are in season that are better than candy, you just have to know which ones and when.  For instance, right now, MacIntosh apples are fantastic, and so are Haas Avacados (love those), coming later on the Honeydew Melons will be shipped in from Chili, I believe and they'll be very sweet.  Pineapple is a great choice as well.  As for veggies, Beefsteak Tomatoes should be a great pick in your local store, as well as Vidalia onions.  If you haven't seen them yet, you will.  By the way, go with the petite sweet potato for now, the season isn't quite upon us; oh, and definately go for some fresh corn.  If you can get it I recommend the tri-color.  I know, we're not supposed to have starches but I'm thinking about  your blood/sugar issue and these will definately help you out.

If you want something with refined sugar then by all means go for something that's extremely satisfying at the same time as not too bad, like "Fruit by the Foot" kind of thing.  We have something like that in our natural section in the store but I can't remember the name of it.  I call it Shoe Leather.

Oops!  I have to go to work.  Feel better honey.  Take care and be well.

 Thanks guys...well it's a new day and I'm done being angry and am now coming up with strategies. There is a grocery store here that I love, that is all natural and organic. It's called the sunflower market. I know they have some in other states but not many yet. They are cheaper then whole foods and Trader Joe's so that helps too. They have about 4 isles of supplements and herbs. They also have an herbalist there to answer questions. I'm going to go down (maybe not today because it's getting ready to snow) but soon and see what she has to offer. I'm also kicking myself in the butt because when I was about 12 my tonsils were so enlarged that they were almost choking me. My what I then considered stupid hippie Dr. prescribed tea, which I never took and my mom took my to an ENT Dr. and had my tonsils removed. Maybe if I had stayed and listened to the hippie Dr. I wouldn't be in the position I am now. 

So my next step is to try and find a "stupid hippie Dr" to talk to. I'm going to ask my Aunts massage therapist who specializes in Raikii and some kind of Brazilian witch Dr. thing and see who she would suggest. I should know by now that yeah Santa Fe is the hippie/naturalist/artist  capitol of the world, but I should have embraced my heritage as a kid and I might not be in this situation that I'm dealing with now. So it's time to mix some eastern/tribal remedies in with my western medicine. It never hurts to try! Plus, isn't college supposed to be a time of experimenting, I mean yeah to most people that means sexually and drugs but for me it could be experimenting with supplements, and herbs and teas to see what works.

So those are my goals, find a hippie Dr. and talk to the herbalist at the store. My other goal is to get off Diet Coke because like I posted with my corn recipe, I don't want to be fermented in Diet Coke! Oh and my rant yesterday, I wasn't trying to be funny at all, it was very serious, but when I re-read what I wrote since yall thought it was funny, thought yeah zombie-vampire carnies are pretty hilarious aren't they?! Last night I don't really remember my dream but I know it had the kids in South Park in it...that's prolly because I watched South Park last night. it's my guilty pleasure that when I'm mad, makes me feel better. Plus a lot of the cartoons make more sense if you live in the NM/Colorado area.

 Venting again! Only because I can't find my pain journal anywhere and if I keep looking I might explode in frustration and I don't think my husband wants to pick up little pieces of flesh tonight! So, I guess an update first. I weened myself off of the amatriptylin and have been completely off for 2 days, tonight will be the third night now and i have been feeling amazingly bad! My mood has improved, I don't want sugar or junk food, I've lost 2 pounds (all water I'm sure so not that exciting) but my pain that was almost long forgotten has started coming back and I didn't sleep that well last night. I had a hard time falling asleep and then was asleep about 4 hours and then was wide awake. So after laying around for a while I got up went to the living room, put in a documentary because the monotone voice and light music are good white noise and then fell back to sleep. So it wasn't terrible, but it wasn't the best ever so I guess I have to pick my battles and I'm still not sure how I value sleep versus weight but there are still other options amatryptilin can't be the answer to the problem with all the other problems it causes!!!

Anyways, I'm here to rant about the stupid things I do, or more like don't do! I forgot to get my cymbalta refilled today and I take it at night, and I get it filled at evil Walmart and there pharmacy closes at 7pm!!!!!!!!! So, I went to wallgreens, because they are not quite as evil as walmart and are open 24/7. Well, Walgreens couldn't fill it because they would have to transfer it from Walmart, which despite the store being open 24 hours a day, there pharmacy is NOT. But, the Walgreens pharmacist said that I could just call my Dr. and they could call it in and then they could do an emergency 1 week fill and fill it that way. I explained that the Dr. who wrote the prescription is in Ohio. The very nice pharmacist said that it didn't matter that they should have a Dr. on call. So, I called the Dr.s office and the receptionist didn't get why I couldn't wait until Monday and so the Pharmacist explained that the withdrawal side affects weren't pretty and it's very important not to skip it. So, she paged the Dr. who was on call. She called me and bitched my out for waking her up at 11pm (I wasn't thinking about that, it was only 9pm in ABQ) and how this conversation could wait until the morning and then hung up on me before I could even explain anything. My husband then called the Dr.'s office back, had her re-paged and she still, an hour later has not called back!!!!!!! I understand she was asleep, but she is ON CALL! If you don't like your job then get a different one! 

So then now I'm all worked up and get all stressed out for no reason really except I know what it feels like to miss my medication because I had plenty of experience when I was on Effexor with the weird side effects of not having it. First I wake up feeling really good, which is nice but not normal. Most people don't want to go near me in the mornings. I'm like the Grinch who you wouldn't come near me with a 10 and 1/2 foot pole! Anyways the day starts going and I get nauseous. Then, I get these weird tingling sensations. They happen in the tips of my fingers, my tongue, my neck and they happen when I make any sudden movement. So between that, the nausea, the wicked witch of the witch bitchiness, it really ruins my day, and I usually don't start feeling normal for a couple of days. 

So, should I blame myself for forgetting to get my prescription filled, or can I play the FMS fibrofog card!

Or, do I blame myself for getting my prescription at evil walmart and not at wallgreens?

Or, do I blame the Dr. who despite being on-call, won't help?

Oh man Jen, I wish I had something good to offer other than in my opinion it is ALL the witchy doctors fault.    Stuff happens and anyone can be in the boat you were in and you said it right, she was ON CALL.   Meaning, it's her job to get up and take the call.   All she had to do was a simple conversation with the pharmacist.   She could have done that in the time it took for her to yell at you!

I am truly amazed sometimes at the complete lack of compassion some in the medical field have.   Don't you become a doctor because you want to help people?  I'm a social worker and the ones who have treated me the worst are other social workers.   How does that happen?

I'm SO sorry you had to go through all that and I hope you are doing ok soon after dealing with the not having any of the med.  

Take care of you!

Aimee

Thanks Aimee! I'm recovered now. It's funny how missing a medication by 18 hours can make you sick for 2 days! I'm better now and I've moved on. It's her karma she has to deal with now, and I'll just be smarter about where I get my prescriptions filled from now on; lesson learned!

My Doctor had me on amatriptylene for about two yrs @150 mg and it got so i could sleep either i think the drug made me groggy, so i didn't know what i was doing. I was off in a dream world of my own! I'm glad for my wife that she got me to ask the doctor to cut back on the drug, she sad i was over-medicated, which i was. Now i'm on 1pill a day, 25mg  to help me sleep. But i still wake up during the nite to go to the bathroom, and still half to wait a few moments to see where i'm going!

I still have a lot of side effects like constipation , seeing fuzzies, shakes. etc. I think i'll have the side effects the rest of my life! Because they don't seem to go away? I gained 20lbs, of which i shouldn't with my bad back. It just makes it worse!

I got to the point the doctor wasn't doing me any good, so i got rid of him!! now i'm seeing a psychologist instead of a psychiatrist, My psychologist has got me re-interested in hobbies and social habits. I think when i see my family physician, i'm going to ask her to take me off of amatriptylene completely. I'm feeling a lot better with out all that medication.

I've been on Lyrica for the past two months and i'm able to sleep better.....

I went to a family Christmas party last night and if one more person told me I didnt look sick I think I would have hurt someone. I think they feel its a complement. Someone needs to tell them its not. lol

I also wake up locked up and stiff every morning and wonder if I will ever get better.I want to find my normal self again, so I'll keep on praying and trying to think positive

What happened to Lumigrate?? isn't anybody posting comments any more?? The last post

was December 2009,  it is now  July 2011   please someone tell me what's going on????  

Thanks for your comment, kc2ahu...  People are posting, just not people with FMS.  We're close to 1,700 pieces, (this is a piece), and the number of people registering as users has quadrupled every year, basically.  Lumigrate launched in 2009 (March) and that was when facebook was just gaining popularity.  I invited MANY people to run areas of the forums and everyone ended up started their own blogs or facebook pages, with the exception of Yenta.  Which is FINE, as on a day to day basis I have shifted my time to focusing in the providers/experts who are continually bringing information to Lumigrate, and the numbers of reads we have is significant.  

I'm continuing to get providers involved to meet all the aspects of the You model, and to get those providers knowing each other so they can shift people to each other when they have patients/clients/customers who have needs that the others are appropriate for helping with.  That way people are not limited by the providers they have in their location where they live.  And so we have not yet done the SEO (optimized the search engine) which will put us higher in the rankings than we already are just from being active on the Internet for over two years now, linking with legitimate websites and etc.  Just two years after launching, we were on the first page of Google with the words "fibromyalgia integrative medicine".  

Thanks for stopping by and pointing that out.  And not to worry, there will be more people finding us in the future who will write, I am sure, and all that takes attention and time and as I said, I've been concentrating MY time on getting the providers involved who can help everyone coming and reading (and hopefully DOING things to help their health).  ~~ Mardy