Wish me luck and /or say a prayer

[k9helper]

I have gone off my Lyrica to see if I can control my pain with diet/exercise/massage/IMS and Osteopath. I have gained so much wt and I know it can't be helping with my pain. I can't say for sure if the weight gain is from the Lyrica or one of the other meds I'm on but I have to try something. So this is day 1 with no Lyrica. I didn't sleep last night..was up until 3 am,*****. I was able to run for about 20 min today-could have done more but I also have a cold and a fever so did not want to overdue it but I would like to be able to sleep tonight.

Let me know if anyone else has been down this road and how it worked out for them.

[Jkae]

Just checking on you ...hope you are doing better!
The Bike Rally in the mountains was GREAT!!! Only I let my meds run low... thought maybe I could possible go off my Wellbuturin. Could not do it. I got so fatigued and my sleep was all messed up again. I am just now beginning to balance out. I have another issue to deal with  now...if I can every get in to see my Doc. Good news though...I seem to be doing fine without the savella!
No, I have never tried the Thai Yoga. I hope it is helping you.

[k9helper]

Hey sorry it's taken so long to get back to you.We're still having rain here so oxycodone is still my best friend.
You sound like you're very busy for the next while. Have fun on the bike tour. I'm sorry to hear about the tornadoes.I hope you are alright.

I tried Thai Yoga massage today and it helped for pain. I'm also going to try a few other non-drug related things to try to improve as well.
What have you tried?  

[Jkae]

Hey! Sorry you are having so much pain...I do hope you are feeling better! I know just what you mean when you say "I can never be sick". I've been through this myself and I too am very tired! I just stopped talking about my health. I am still on my mission to get myself well...I am feeling better still not where I want to be...but better. It is a struggle! It's good that your thyroid levels are in check. GO ahead and RANT!! I always feel better when I do!

I have had a lot going on which has kinda put me into (you better get better) and fast you have a lot to do! My youngest daughter is going off to basic next week (having a big party this weekend).Thursday the 2nd my husband and I are off to a bike rally for 5 days....and my oldest daughter is planning a wedding in May 2012. And work has been crazeee.....North Alabama was hit with several Tornadoes a few weeks ago. So, we have had a lot to do!!
BTW...I love the name! I am a big dog lover. I am a sucker to take in strays. I have a chocolate poodle who found us (best dog ever). We also take care of my daughter and her fiance's golden retriever until they get a home that will allow him.

[k9helper]

I'm trying to adjust to Topamax and they increased my dose of cymbalta. I currently have no pain control and it's starting to really get to me. The constant pain and depression are very taxing. Every minute of every day I fight with myself to keep going. I'm sooo tired of fighting and trying to be strong because it's what everyone expects of me,including me. I'm tired of the "mental gymnastics" that seem to be happening in my head.-stay at work,go on short term disability, short staffed at work, can't afford to be on only 55% of salary, it's not something I planned to have happen, why is it I can Never be sick. I'm tired of people not believing or not understanding that it Doesn't go away in a couple of days,Sorry for inconveniencing Your lives.Because I ******* wanted this you know.

My rant for this evening. Like I said I'm tired,sick and yah currently feeling sorry for myself-someone has to. lol

I take natural thyroid hormone it covers T4,T3,and I think T1. I tried the synthetic hormones and they didn't work for me at all. I like the natural thyroid hormone better. My levels stay much more stable and fewer side effects.


k9helper was my career for years. I worked in animal hospitals as a veterinary technologist
I didn't just help dogs but k9helper made the neatest name.lol

[Jkae]

I'm sorry you are not feeling well! what meds are you adjusting? I meant to ask you about the Hashimoto's. That in itself can be hard to deal with...how are your thyroid levels now?
About a 1.5 years ago I had a nurse practitioner put me on Levothyroxine...I was on it for several months and it made me one crazy zombie chick!! It really messed my head up!!

Dreams can be down right frightening!! I've been up since 4:30 this morning...had a bad dream..the kind that just bolt you wide awake!! This is why I am so afraid of drugs...the damn dreams....they scare me to death!

There are other sites ************ is one of a few I am on. I am under a similar name on all. BTW what's in your name? I love dogs!!

[k9helper]

I'm not doing so well right now. The doctors' have changed my meds and I have been exhausted,nauseous,irritable,general malaise,can barely hold my head up. I finally figured out it's not the new med but the increase on the old one, from 60 mg-90mg. So not going to happen!

I've done the jump out of bed thing as well. Not recently but when I was younger I had VERY interactive dreams. I would sleepwalk,fight,jump out of bed,talk,move around,see things that weren't there ( I hope they weren't there-lol),move things and then not be able to find them the next day. Very creepy.

I hope you're going to be able to continue to come to this site,maybe on your home computer? I know you don't want to be near it after working on one all day but perhaps just this site?

[Jkae]

I get that virus crap everytime I log in this site now! I do have a comp at home...but don't touch it....kinda like the phone same thing. I'm a secretary. I hate these things when I go home!!!! LOL!!!

I can Kinda relate to your sleep problems. I have no problem falling asleep...I just cannot stay asleep! And I feel so tired all the time...I'm just soo exhausted for no reason.BTW I had some crazy dreams over the weekend...no jumping out of bed tho! Just weird stuff...I guess my brain cooties causes that!


Are you OK? your message was short!

[Jkae]

Hi Sarah! I was already on the Tope when I read this also, so I think maybe it has helped me kick the Savella. But I must say I do take Wellbutrin,Voltaren,Flexerill and a few vitamins as well as the Topamax. I no longer take any sleep meds..if I can help it!

[k9helper]

I've never had the pop up virus notifications. Do you have a home computer?

I only fall asleep if I sit still too long during the day. At night I have trouble sleeping. It's very complicated.

[Jkae]

No, I couldn't change. I did clean it up some. Looked more like I dropped food on my shirt lol.
I have not had any testing in the GI or Digestive area yet. My Doctors can't seem to handle everything I tell them when I go in to see them. It's a slow process getting anywhere with a Doctor in this area. I'm about to have to search for a new Doctor soon. My latest Doc was shut down because of Insurance fraud.
Anyway, it seems we have a few things in common. I think I border on the bipolar thing myself....afraid to mention any more craziness to the doc. I don't want anymore meds.The Tope may help with that. The main reason I went off savella was that I was just about manic.....I really thought I was going crazy! I could not shut my mind off...I was acting out my dreams...jumping out of bed. One night I jumped 5 feet out of the bed backwards..hit my head on the dresser. I was scared. My mind feels much better now....I am more calm. I am able to sleep up to 3.5 -4 hrs, waking only once during the night most nights.
Narcolepsy......like you just fall asleep anywhere anytime?
I too swell alot, But I take anti-inflammitory Voltaren...it has helped alot. I have had more sweeling since i stopped the savella....my ankles seem to disappear on me  lol.
I enjoy talking to you too. I may have to stop coming to this site though. I keep getting these pop up virus notifications. My boss told me to stay off the site I was on (this one). Has it happened to you?
Have a good weekend!!

[SARAHKC0123]

hi all..been reading this conversation for 20min now, mostly cause i just stubbled on this website and have had fibromyalgia for 10+ yrs now.. I am 39yr old, wife & mom and my pain & fibrofog is bad. Also pharmacy tech for 20+yrs & never heard of Topamax for this use. Will have to give it a shot. I am taking Daypro, cymbalta, flexeril, ambien, & lortab for all the pain. I went back to school a couple of yrs ago to finish my biology/chemistry degrees & fibrofogged a 500lvl ecology test & got so frustrated that i quit. Went to a neurologist b/c I thought I must have a brain tumor, but he said, after all the tests, it was just my fibrofog! Who ever said "what doesn't kill ya, makes ya stronger" was a *******! lol

[TheLightSeeker]

Hey k9helper.

There's a way out of this. You gotta have faith. You need to focus on your recovery and your healing more than anything else. Gather as much support as you can for this!
Do not fall into the trap of staying too close to your condition and symptoms.
I know it is easier said than done. But I've been there personally, and I know there's a way.
Probably somewhere in the past your intestinal walls got compromised.
Leaky gut syndrome is suspect! It does not matter what medical doctors are able to diagnose or not.
it is just a bunch of medical labels- or lack of- and corresponding prescription drugs.
It's a tough situation to be in .
The fact is that your nutrients from your food intake are not getting absorbed or assimilated
properly. Your body needs all the nutritional elements it can get, to function properly.
And your immune system is weakened greatly in the process. And the leaked substances are doing gradual damage, affecting many bodily systems.
My daughter has been through all this. And with our support -my wife and I-  the help of a young and ambitious Naturopathic doctor, and my daughter's research know-how along with our combined intuitive abilities,  has managed to claim her life back.
The amazing thing is that from the beginning she refused to follow her doctor's, her specialist's and the surgeons medical advice. There were too many unanswered questions
and it seemed too obvious that the were all kinda "fishing". Now, we all understand how complex our g.i and digestive systems are. So I don't blame them. They do what they know and what they are trained to do.  She took no medications despite the fact her symptoms were numerous, severe and constant! And the psychological and mental implications on top of the physical symptoms were almost unbearable.
Please send me a message directly or post at the alternative therapies
if you want to know more details.
Stay strong !
Blessings
Nikodicreta

I'll be away this weekend at a convention,
however, I'll get back to you next week, should you decide to respond.

[TheLightSeeker]

Hey k9helper.

There's a way out of this. You gotta have faith. You need to focus on your recovery and your healing more than anything else. Gather as much support as you can for this!
Do not fall into the trap of staying too close to your condition and symptoms.
I know it is easier said than done. But I've been there personally, and I know there's a way.
Probably somewhere in the past your intestinal walls got compromised.
Leaky gut syndrome is suspect! It does not matter what medical doctors are able to diagnose or not.
it is just a bunch of medical labels- or lack of- and corresponding prescription drugs.
It's a tough situation to be in .
The fact is that your nutrients from your food intake are not getting absorbed or assimilated
properly. Your body needs all the nutritional elements it can get, to function properly.
And your immune system is weakened greatly in the process. And the leaked substances are doing gradual damage, affecting many bodily systems.
My daughter has been through all this. And with our support -my wife and I-  the help of a young and ambitious Naturopathic doctor, and my daughter's research know-how along with our combined intuitive abilities,  has managed to claim her life back.
The amazing thing is that from the beginning she refused to follow her doctor's, her specialist's and the surgeons medical advice. There were too many unanswered questions
and it seemed too obvious that the were all kinda "fishing". Now, we all understand how complex our g.i and digestive systems are. So I don't blame them. They do what they know and what they are trained to do.  She took no medications despite the fact her symptoms were numerous, severe and constant! And the psychological and mental implications on top of the physical symptoms were almost unbearable.
Please send me a message directly or post at the alternative therapies
if you want to know more details.
Stay strong !
Blessings
Nikodicreta

I'll be away this weekend at a convention,
however, I'll get back to you next week, should you decide to respond.

[k9helper]

Had to be a white shirt...Murphy's law. Were you able to change?

I get those GI symptoms as well. they are much better now that I don't eat gluten,sugar,bananas,grapes..basically anything I've identifies as  a sensitivity. I still get some diarrhea but not nearly as bad. I find I'm nauseous a lot are you?. I was tested for ciliac, had 2 endoscopies and a colonoscopy- oh yah great fun( sarcasm). I am prone to gastroenteritis-ever had it?

My latest things are now they tell me I am mildly bipolar, have depression, eczema and may also have narcolepsy. ******* awesome...crying now.

Saw my Dr. today. He started me on the Tope plus fluid pills because I'm retaining fluid and my hands are extremely swollen and very sore.

Yep ,just another day in paradise. talk to you later.

[Jkae]

Well I spoke too soon. I got a bad nose bleed at work earlier...white shirt...drip drip...not too pretty when you work up front in an office.
I really don't know what's going on with my digestive system. Sometimes I can't keep food down. Then if I do, I have bouts (some very painful) where I'm up all night running to the bathroom. Then there are times I am so constipated.
Sorry short on time...later.

[k9helper]

That really ***** about your allergies. What kind of digestive proplems...if I can ask?

I know what you mean about too many meds. People look at me really strange when the topic of  this drug or that one comes up and I can go into a 10 min lecture on what is is,what class of drug it is,contraindications, side efffects ,etc...because I've already tried it. lol      I'm starting to feel like a pharmacist or a walking drug store.

I never remember anything either-the joy of fibrofog. I also get migraines-cluster migraines so i'm really hoping the tope will put an end to them or at least make me forget about them. hee,hee

I really enjoy talking to you. Thanks.

[Jkae]

I seemed to have developed my allergies from what ever is going on with me. But I get weird stuff....strange rashes. I even had a nurse say to me once "oh yeah your the one with that weird disease". Right now with allergy season in full swing....I am sneezing and coughing.My eyes itch, nose is sore,throat hurts! I sound like a baby! I take Loratadine when needed....Doc tried to put me on another prescription... I said no thank you!
I've been having some digestive problems. Never been tested or checked for anything yet.That's my next mission with the Doctor.....if I still have a Doctor!
I hope the Topamax works for you. It has definately helped with my migraines. A lot of people complain about being forgetful or stupid while on Tope. I was forgetful before going on it. I use to get these terrible nose bleeds that I always thought were from my allergies. Now they seem to have stopped..I kinda wonder if the Tope has anything to do with it. I always worried that the nose bleeds might be something more serious (like something in my brain). Tope being a seizure med (brain med) maybe it fixed something. Boy I have been on way too many meds...LOL!!!  

[k9helper]

I was never allergic to anything in my life. I guess technically I'm still not. I had food allergy testing done and nothing came up as an allergy. Mine are sensitivities, each "bad" thing I eat gives me a different reaction. For example grapes give me severe migraines( not sure if it's the chemicals on them or the tannins in them but they put a real hurting on me),gluten causes me to have severe gastroenteritis( Usually requires about 3-4 days of vomiting/diarrhea and Nexxium to get through it), sugar makes me itchy everywhere, caffeine causes eczema flare ups, you get the idea.
I don't remember being so sensitive to food before. I think I have had fibromyalgia my whole life, it has definately gotten worse with age,stress and more symptoms have developed. I know I never could digest bready foods very well ever. I was tested for celiac,chohn's, IBD.... blah,blah,blah. Never positive for any of them but I still get intestinal issues.

I basically eat an anti-inflammatory diet.I know I'm really sensitive to processed foods especially processed meats( cold meat), aspertame ( not sure if it is because of the phenylalymine or just the aspertame itself), many chemical sensitivities, many medication sensitivities. I also son't eat citrus,dairy, tropical fruits like mango,bananas,kiwi,papaya etc-high mold content and I am sensitive to mold.

I'm hoping to start on Topamax this week-end. I stopped taking Lyrica because of weight gain. So my pain etc are pretty much out of control. Work isn't helping-the stress ***** and it's very physical.

I think I'm going to ask for a bubble to live in. lol

[Jkae]

I hope you are feeling better. I am feeling a bit better..still a little achey. My neck is bothering me the most (osteoarthritis in neck) I didn't realize how much the savella was helping with that also. Which makes for a difficult night trying to find a position to relax my head and neck. I have not taken a sleeping pill since the begining of this year...I am trying so hard to get off as much medication as I can.  I hope you are sleeping better.

As for the Diet it is anti-inflammitory diet. Basically do not eat snack foods, fried foods, processed foods, sodas.
Eat Omega 3 fatty acids seafood like salmon,halibut,scallops,walnuts,green leafy veggies. Lowfat protein ..poultry,tuna,beans.Increase daily fiber & antioxidants get your 3 servings of fruits and vegetables daily.
BTW...I'm jealous ....you went for a run? It's been two years since I have been on a run and I was struggling then. I have benn out planting flowers though....and allergies are really bad. About allergies...I was just wondering. I know you said yours are food related..have you always had them or did they seem to come with the fibro?

[k9helper]

Hey thanks for the info. i did try the extra virgin coconut oil in the past. Sadly it didn't help any. Now I just don't cook with oil . I've been thinking about the DMSO I think i might give it a try. My hands and  knees are the worst daily for pain.( it hurts everywhere but if I had to pick worst areas -hands and knees)

I was actually able to run and garden today....Yah. First time in about a week or so.

[TheLightSeeker]

Hey k9helper.

I hope it's going good till now!
For weight loss, extra virgin coconut oil (EVCO) is great. Replace all your cooking oils
to eliminate the inflammation they cause, with EVCO. It is the only safe oil for cooking!
And it will boost your metabolism, besides being anti-fungal, antiviral, anti-microbial and anti-parasitic.
Also look into "oil pulling" with EVCO.  www.coconutoilresearchcenter.com
For pain checkout DMSO. 30%-50% strength applied on skin relieves pain almost instantly. Many athletes use this.
Better than most drugs. Side effect : odor.     But when in severe pain and you can't sleep, what's a little smell?
Hope this helps.
Please do your own research, or check with your health professional before making any decisions, regarding your health.
Blessings,
Nikodicreta

[k9helper]

I would take a melatonin at night like recommended. I still would have trouble falling asleep but the next morning my body was sooo slow. Heartrate,reflexes,brain,everything slowed right down. It was extremely scary , I felt like my whole body was shutting down. Only tried it 2 nights and then quit,it wasn't worth it for me.

I've been running a low grade fever lately as well. Weird. Usually my normal temp. is low but I've been so hot the last couple of weeks I layed down in the walk-in cooler at work for about 10 min.

What is the arthritis diet? Never heard of it.

[Jkae]

I'm not feeling so well today either. Kinda weird....I have scratchy sore throat, low grade fever, body aches. I also thought it may be my allergies...now i'm wondering if it may have something do with coming off the medication and my body trying to adjust.

As for the vitamins I take Vitamin D (I've been deficient) Calcium+D. I don't take it like I should though. Last Test I was sufficient but not optimal a 40. I know my eating habits are bad and that's part of why I feel so bad. My last Doc put me on a arthritis diet to help with arthritis pain. I did good for a while. It's hard to do.

You had a bad reaction to melatonin? What happened? I've never tried it.

[k9helper]

I was at one time on Lyrica,Cymbalta, Cipralex for the fibromyalgia. Also on prescription strength reactin for allergies( food related), thyroid medication for Hashimoto's thyroiditis and I take multivitamins, because I have so many food sensitivities I can't eat very well, Omega 3,6,9, calcium and  vitamin C. I'm not always religious about taking the vitamins-sometimes I forget and sometimes my stomach just isn't up to them.

I've gone off the Lyrica and the Cipralex. I felt fine at first but now I feel like S--T.I had a cold/sore throat and now I have a sinus infection so it may be related to that but it feels like something else/more I just don't know what yet.

I've tried melatonin to help me sleep-thought I was going to die,really bad reaction.

How about you?