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.

[wonko]

Are you tapering down or making a full abrupt stop?

I have been on neurontin and lyrica (separately) in the past, and if I recall, it works better to taper down instead of stopping suddenly.  

I would definitely suggest consulting the prescribing doctor if you haven't already.

I have lots of problems managing my weight due to fatigue problems and the emotional rollercoaster that comea along with my flares, but I agree that I didn't like how lyrica made me feel.  By the time I took enough of it to get symptom relief, I felt loopy.  A good osteopath can be a wonderful source of relief!  I had a chiro where I last lived who used a lot of osteopathic methods on me and it helped me so much.  In my current home I can't find anyone so good.  I do exercise several times a week, and I think that helps a lot overall but it is tough to stay in a routine despite flares and the unexpected.

I hope you're feeling and sleeping better by now...

[k9helper]

I went cold turkey. It was a good time to do it because I have 4 days off over Easter.My doctor will be fine with it. We have been together for 15 years now.  He actually listens and since I have a medical background he knows he can trust me to make these decisions.

I do see an osteopath-love her. I have felt so much better since I started seeing her. I also get massage and IMS regularly. I think one of the things that helps me the most is being able to sleep in. If I could do this everyday I know I would feel much,much better. Sadly my job doesn't allow it.

How are you doing?

[TrudieC]

Good luck with this!  Lyrica also put a lot of weight on me.  I was on 450 mg and I have reduced down to 150 mg and go up another 75 mg if I am flaring.  I tried to go lower but the neuropathic issues (intense itching and crawling sensations) were too much and stay manageable at the 150 mg level.  My family doctor gave me Trazadone when I did the reduction and it has really helped my sleep and does help with some of the other issues.  I am just now starting a regular exercise routine and am hoping it helps my weight get down but the intense hunger is still haunting me.

[k9helper]

Is the hunger from the Trazadone? I'm not familiar with this medication.I was on 150mg of Lyrica and took extra if I flared up. So far I'm doing ok,I am itchy but I also have food sensitivities,some of which manifest as itching.My nap jerks and restless legs are still under control , keeping my fingers crossed they stay that way. Sleeping is a big issue but it was on the Lyrica as well so I may have to get something for that. It really *****. I don't get sleepy from antihistamines or melatonin. And I have so many drug and chemical sensitivities that a lot of the stuff they usually prescribe either don't work at all, work the opposite or make me violently ill. Just another day in paradise. LOL

What else have you tried?

[TrudieC]

The hunger is from the Lyrica for me but could also be from the Remeron for depression.  I also find that D-Ribose helps as well as Fish oil.  Definitely get worse when I eat sugar.

[k9helper]

I get worse from sugar as well. I've often wondered if there is a yeast connection but have not been brave enough to try one of those yeast cleanses...I react soooo badly to most drugs/medications. I haven't tried the D-Ribose. What does it do?

[TrudieC]

I too wonder on the yeast connection.  I did a cleanse a number of years ago before I had fibro.  Have been debating doing another.  The D-Ribose is a natural product.  I find it diminishes my flare symptoms and gives me more energy.

[k9helper]

I'll have to look into it. I saw a pharmacologist ( Dr.) yeaterday. he wants me to try a different medication. I think he called it Topamax, but I could be wrong. It's supposed to help with Fibro,migraines and cause weight loss. I'll believe it when i try it. So far everything else has caused weight gain.

[TrudieC]

I asked my rheumatologist to try me on Topomax and he actually said he'd never heard of it and he didn't do anything other than what was recommended by the FDA for fibro.  I have read some good things about it helping.  My headaches are getting bad and have moved to a new city so am hoping I might be able to get my new family doctor to let me try it.  Losing weight would be so good.

[k9helper]

Topomax usage for fibromyalgia is actually what is known as " off-label" usage. It has not been cleared in Canada for use as a treatment in fibromyalgia yet. I found out about it through the psycopharmacologist I went to see. He is recommending it and I will get my GP to write a script for it next week when I see him. Maybe you could try this route as well. Get it through your GP by explaining that you are aware it is off-label usage of it but you have heard good things about it and would like to try it.

I didn't realize you were also from Canada...cool.

[Jkae]

I just recently tapered off Savella to see if I can make it on diet and exercise. Four days now, pain hasn't been too bad yet. I'm having muscle and joint pain some twitching in the muscles. I feel more tense too and am getting some brain zaps.  I also take Wellbutrin,Voltaren, Flexeril and Topamax which may be helping some. That is interesting about Topamax and Fibro...I've never heard that before. I take it for migraines and I have not lost alot of weight but I don't eat alot to begin with, but I am over weight. My daughter lost a lot of weight on it she had to get off of it...it actually blocked her sweat glands.
Anyway, I am interested in what all and if you take any supplements.

[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?

[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 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.

[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]

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.

[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]

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 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]

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]

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]

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.

[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.