OK so I was diagnosed with Fibromyalgia

a reply to: tikbalang

at one point me and the doc were talking about a spinal cord stimulator.
look it up

originally posted by: TinySickTears

originally posted by: Khaleesi
a reply to: CmdrZero

I've heard of Lugol's and due to your personal testimony, I will be ordering it tomorrow. Did you have sleep issues and if so did the Lugol's help that issue? Honestly, I have just about given up. If it helps even just one of my symptoms it will be worth it. After I was diagnosed, I googled Fibromyalgia because I worked in the medical field and had always been told that it was a crap diagnosis. I had no opinion on it until I was diagnosed. I was shocked at the symptoms that I had. I had every symptom to some degree. Some more so than others. To describe it as debilitating is an understatement. Thanks for the tip.

hey man more power to you. get the lugol and i hope it works but i have a pretty good feeling you are going to be in pain.
my rec would be go see a doc and get your meds right.

it is not just opiates either. those are the main ones but there is neurontin off the top of my head. other nerve pills.
millions of people take this # for a reason.

i dont know. personally i trust my doc and the WHO more than people raving about lugol.
no offense to anyone....i just dont get it.

either way. hope you feel better. quality of life goes way down with a diog like we have but it can be managed so whatever helps you you should do it......cant hurt

Read my first post in this thread. I've been diagnosed for more than 15 years, I've been on more meds than I can count. Sleeping is my main problem. None of the meds make it better. Fatigue is my next problem followed by migraines and right on down the line with every symptom associated with fibro. I've been on single meds and cocktails of meds to the point that I had 2 medication induced grand mal seizures. Do you really think I haven't tried everything the doctors have available to them? Am I in pain? Yes. I will not go on prescription meds again. It made it worse for me. Some people get results from meds. I didn't.

What happened to this site? Does nobody remember the talk of weaponized mycoplasma, and stealth viruses? Dr Garth Nichols ring a bell?

You can only test the new engineered, accidentally (or naively) let loose pathogens in a dozen or so labs around the world. Don't expect to find results by asking your general doctor.

His reasoning made so much sense. Basically we all carry many pathogens, even STDs not usual to come up in a standard test. After a certain pathogenic load, disease arises and symptoms vary based on genetic susceptibility.

I think it's a touch too complicated for most to bother with, so I don't talk much about it anymore. People find it easier to think you're crazy or strange. Thankfully I slowly got better by not giving up and trying new remedies.

My wife has it under control after visiting a naturopath who helped her change her diet...no more sugar (85% chocolate is now a sweet treat), dairy (goat and sheep ok), grass fed beef or game the only red meat, no pork, corn or gluten. Biggest thing...avoiding food additives. Dinner can be challenging (lots of chicken and brown rice...thank God for spices), but she feels hugely better and wouldn't go back.

Good luck to you!

originally posted by: ChesterJohn
I had been feeling it for a while and it slowly had gotten worse. So I went to my doctor and they gave me the diagnosis. So she has me on Gabapentin 600 twice a DAY .

Seems to work ok and help me t sleep as well

Anyone else using Gabapentin for their fibromyalgia?

Well I may not know much, but as with most illnesses plaguing humanity it appears our great friend found in the miraculous cannabis plant has been reported to be quite effective in pain management related to Fibromyalgia...

NORML atricle on Fibromyalgia. (sourced)

Authors reported: "Patients used cannabis not only to alleviate pain but for almost all symptoms associated to FM, and no one reported worsening of symptoms following cannabis use. ... Significant relief of pain, stiffness, relaxation, somnolence, and perception of well-being, evaluated by VAS (visual analogue scales) before and two hours after cannabis self-administration was observed." Cannabis users in the study also reported higher overall mental health summary scores than did non-users. Investigators concluded: "The present results together with previous evidence seem to confirm the beneficial effects of cannabinoids on FM symptoms."[9]

I don't know much about this med. I was never on it for my Epilepsy, the doctor didn't try that one, she seemed to avoid it for some reason. Maybe she had seen side effects she did not like with it. I really don't know why, I just know she said she won't prescribe that for me, we talked about it. That was Neurontin.

Diet sodapop can cause similar symptoms to fibromyalgia by unbalancing neurotransmitters. You have to be drinking it regularly for a while though. An occasional Soda is not going to hurt anyone, Just don't drink more than one every two weeks and stay away from artificial sweeteners that have similar chemistry.

Sometimes it is a problem in the metabolism of Phenylalanine. Reduced enzyme activity.

a reply to: ChesterJohn

I use that med but not for that. Not sure what my dosage is, 300 three times a day. Or one yellow pill three times daily,

Helped me sleep at beginning but now they don't make me feel sleepy, one thing about them, is if you screw up your dosage they tend not to work as they should.

I use them for nerve pain and temperature control

I suffer from ME/CFS and Fibro. The most important thing to take care of is your diet 100%. ABSOLUTELY NO WHEAT......EVER. Check out Dr Myhill.

Dr Sarah Myhill............... www.doctormyhill.co.uk...

originally posted by: ChesterJohn
I had been feeling it for a while and it slowly had gotten worse. So I went to my doctor and they gave me the diagnosis. So she has me on Gabapentin 600 twice a DAY .

Seems to work ok and help me t sleep as well

Anyone else using Gabapentin for their fibromyalgia?

You have been diagnosted with an imaginary disease. Maybe you have undiagnosed lyme disease...but Fibro is totally made up. It is ALWAYS something else

originally posted by: odinsway

originally posted by: ChesterJohn
I had been feeling it for a while and it slowly had gotten worse. So I went to my doctor and they gave me the diagnosis. So she has me on Gabapentin 600 twice a DAY .

Seems to work ok and help me t sleep as well

Anyone else using Gabapentin for their fibromyalgia?

You have been diagnosted with an imaginary disease. Maybe you have undiagnosed lyme disease...but Fibro is totally made up. It is ALWAYS something else

maybe youre confused with lupus
it's never lupus

for the house fans

originally posted by: ChesterJohn
I had been feeling it for a while and it slowly had gotten worse. So I went to my doctor and they gave me the diagnosis. So she has me on Gabapentin 600 twice a DAY .

Seems to work ok and help me t sleep as well

Anyone else using Gabapentin for their fibromyalgia?

My wife got this condition when she was pregnant. It was horrible. Her hands and feet were burning. They gave my wife Gabapentin, and it worked easing the pain.

Two months before my wife gave birth, the condition went away and never came back.

I heard taking asprin everyday helps too, but people react to different medications.

originally posted by: odinsway

originally posted by: ChesterJohn
I had been feeling it for a while and it slowly had gotten worse. So I went to my doctor and they gave me the diagnosis. So she has me on Gabapentin 600 twice a DAY .

Seems to work ok and help me t sleep as well

Anyone else using Gabapentin for their fibromyalgia?

You have been diagnosted with an imaginary disease. Maybe you have undiagnosed lyme disease...but Fibro is totally made up. It is ALWAYS something else

What a load of rubbish! It us a proper condition. Stop trying to be different!

I would 100% say that "fibromyalgia" is just a word, a cover-all....there is almost always another cause/illness. Over 25yrs ago I was diagnosed with this mystery illness, basically because no-one could put their finger on what exactly it was. My symptoms got so bad after the birth of my 3rd child they thought I'd end up in a wheelchair! I got vague diagnosis of this and that various pills & potions but the "fibro" stayed. I got less and less mobile, every muscle hurt and was sore to the touch as well as all pressure points. The daily pain was constant and worse down my right side from the shoulder down but oh so much worse in my right hip knee & ankle. My legs were so tender to touch they feared thrombosis and put me on wharfarin for a while. I couldn't sit still for more than about 15mins before things started to tighten up, going to the cinema was a nightmare as I'd always have to get up and walk about 2-3 times to keep from stiffening up.

Then I had an accident and broke my shoulder in 3 places falling downstairs (I tripped over the dogs ) and I ended up seeing an osteopath in Greece who my greek son in law recommended as when visiting my daughter & son in law the pain completely ruined any chance of a decent holiday. The osteopath took one look at me in my underwear, and after laughing quietly, he said my right hip was out of line, down and to the rear, something called Sacro iliac joint displacement. He told me it the sacrum probably hadn't quite fused together properly after childbirth, which despite being only milimeters, threw my body off balance, twisting the tendons & ligaments slightly outward, making my right leg slightly longer than the left, causing the left leg to overwork to counteract the problems with the right. Over such a long period of time, this had become my normal gait. He also said I clearly had hypermobile Ehlers-Danlos syndrome (something I'd never heard of) due to my velvety soft skin and overstretched tendons which resulted in joint instability and the dreadful muscle lesions (sore spots). He gently but firmly massaged my lower body and carefully pulled on the right leg to re-align the hip/sacrum. I was shattered afterwards but no word of a lie....I had NEVER felt so good!! I could walk sit almost run lol and immediately made an appointment with an osteopath in the UK when I got home who is amazing.

My current osteopath is brilliant but alas not available on the NHS so I have to pay which makes it difficult. Unfortunately despite pleading with my doctor for an operation to pin the sacral join back into place I was told osteopaths are quacks and no such operation exists (it does in the USA) and its something I'll just have to get used to especially at my age! He refuses to believe in SIJD and just puts everything down to rheumatism arthritis and age so I don't even bother going to the doctors anymore. Its no surprise that more women than men suffer from "fibromyalgia" especially if you link the onset of the pain to the rigours of childbirth.
Sacro Iliac Joint Disfunction

So whilst I'm struggling to afford the monthly treatment the actual "cure" isn't available for me in the UK but what it does show is that fibromyalgia which is just a word for pain in fibrous tissues, normally has a cause.....that is why we experience pain, to warn us there is an underlying problem.

Have a look at Lyme disease. This is a disease that is very missed and is known as the great mimicker. A lot of people have had Fibromyalgia, Multiple Sclerosis, ALS for years only to find out they had Lyme all along. The blood tests are very inaccurate and known to give false positives - a lot of doctors are very poorly educated in it. This is treatable, but it's a long treatment when it gets to it's late stages and/or getting the right treatment. It causes a lot of symptoms and it's late stages: brain fog, arthritis, neuropathy (nerve pain) body pain etc.

You need to steer your own healthcare to solve this if you feel the diagnosis isn't right. I need to learn more about Fibro, but I do think it's one of the ones they use when they have difficulty diagnosing. The clue is working backwards with a timeline of your symptoms.

originally posted by: SentientCentenarian
a reply to: ChesterJohn

My son is on Gabapentin for fibro as well as many other meds. It took him several years but he finally got full disability. He is in pain 24/7 and his sleep is really messed up - legs twitch uncontrollably and he obviously doesn't get into full deep sleep at all. The meds or the disease have also changed his personality completely; used to be easy going and very productive, now can hardly function and is angry all the time.

His onset may trace back to a Ciprofloxacin (fluoride) antibiotic he was given for strep throat; I'm unsure because he was away at college at the time but he changed overnight. It was years before he got a diagnosis but 'causation' is never mentioned or addressed. I'm highly suspicious it was the Cipro and there is a lot of reading on line discussing that if you're interested. They also discuss trying to get the fluoride and accompanying neurotoxicity out of your system, sooner rather than later being preferred as the damage may be permanent. Make sure your diet is optimal with large doses of Vitamin C and the B complexes - both being necessary for nerve and tissue healing.

It's definitely a real disease, but like with a lot of other things (vaccines and the possible relationship to SIDS and autism) the discussion of causation is considered a conspiracy theory rather than being honestly discussed. It's known to hit women more so than men but my son is a small, lightweight guy; this may instead point to the dose of Cipro (?) versus body weight.

As with my post above at the original poster. Lyme disease is worth exploring. Cipro's are used to treat Lyme Disease / Co-infections. Treating Lyme can actually make you worse due to something called a 'Herxheimer Reaction' if you Google it. Basically causes a massive die-off of bacteria that release toxins into your system, so during treatment it's one of those things that gets worse before it gets better.

Wow great to hear from so many on this issue

A little history.

for the last 19 years I have had some pain on a regular basis tramadol worked and when more severe I used Codeine. When we arrived back in the states I had a sciatica event that had me immobilized for 7 days. After five days I was finally able to see a doctor. No insurance so no doctor would see me.

Gave me a shot of Demerol type med right into my lower back, For the first time in five days I was without pain. And they placed me on codeine. but that constipated me and made things wore. After Xrays and Rheumatologist I went to a Chiropractor Better in two days and after three weeks I was back to normal. I see a chiropractor regularly.

But some pains were still there. Later I was bitten by a dear tick and had lyme's they didn't even catch it because I kept coming back negative. while I went overseas, I went on antibiotics for 21 days and it was all over killed off the Lyme's.

But I still had some weird pains in joints neck and throughout my back and sometimes migrated all over. One day my wife went to just rub my back while we were in the store, because I complained about pain, and it felt like she put her hand into an open wound. When we got home I took off my shirt and asked her to tell how bad the rash was one my back, she replied that there was no rash, that was last December.

Since then it has happened 5 times and migrated to my arms and leg. Very painful so I was tensing up and causing more pain in muscles and joints causing more pain. There were times I could not be touched at all. Because of my description of the pain my doctor prescribed the Gabapentin for the moment it seems to work best.

My Mother and sister said when they first started too have their now diagnosed Fibromyalgia that is how they felt as well.

originally posted by: ChesterJohn
But some pains were still there. Later I was bitten by a dear tick and had lyme's they didn't even catch it because I kept coming back negative. while I went overseas, I went on antibiotics for 21 days and it was all over killed off the Lyme's.

Just as a note often Lyme isn't treated properly, it all depends on when the treatment starts from start of symptoms / rash to what dose and length of treatment you have. The standard prescription of Doxycline 200mg a day is fine when used within the first month of having the rash / symptoms start. It should be for a full month though. It can relapse - so if you had a rise in symptoms within months after this, you could speculate you might still have it.

Often families can get it at similar times based on living on the location / going on the same walks.

Lyme ticks also have an array of co-infections that get carried along with it. These can all cause different symptoms from person to person. You can quite easily get reinfected with Lyme at a later point and get passed a new infection.

I had all kinds of joint pains from Lyme because of inflammation: Neck pains, ribs (costochondritis), wrist, ankles, bone pain, finger joints. It's a clinical diagnosis most of the time, the reason the blood test is so poor is it looks for antibodies that fight Lyme disease, but Lyme disease suppresses the immune system so it's chance if they are detected or not. There are other more accurate tests, but they can still be inaccurate.

I advise you to explore this fully as might be solution you are looking for.

originally posted by: Khaleesi

originally posted by: TinySickTears

originally posted by: Khaleesi
a reply to: CmdrZero

I've heard of Lugol's and due to your personal testimony, I will be ordering it tomorrow. Did you have sleep issues and if so did the Lugol's help that issue? Honestly, I have just about given up. If it helps even just one of my symptoms it will be worth it. After I was diagnosed, I googled Fibromyalgia because I worked in the medical field and had always been told that it was a crap diagnosis. I had no opinion on it until I was diagnosed. I was shocked at the symptoms that I had. I had every symptom to some degree. Some more so than others. To describe it as debilitating is an understatement. Thanks for the tip.

hey man more power to you. get the lugol and i hope it works but i have a pretty good feeling you are going to be in pain.
my rec would be go see a doc and get your meds right.

it is not just opiates either. those are the main ones but there is neurontin off the top of my head. other nerve pills.
millions of people take this # for a reason.

i dont know. personally i trust my doc and the WHO more than people raving about lugol.
no offense to anyone....i just dont get it.

either way. hope you feel better. quality of life goes way down with a diog like we have but it can be managed so whatever helps you you should do it......cant hurt

Read my first post in this thread. I've been diagnosed for more than 15 years, I've been on more meds than I can count. Sleeping is my main problem. None of the meds make it better. Fatigue is my next problem followed by migraines and right on down the line with every symptom associated with fibro. I've been on single meds and cocktails of meds to the point that I had 2 medication induced grand mal seizures. Do you really think I haven't tried everything the doctors have available to them? Am I in pain? Yes. I will not go on prescription meds again. It made it worse for me. Some people get results from meds. I didn't.

Are you a depressed person?

This is just my opinion, ok, I have suffered many injuries as a young adult, broke many bones and blew out both knees. I skateboarded most of my life and played many sports including D1 rugby.

As I got older, I was in constant pain, but I knew why. I lived with it. I knew why I was in pain. I had many sports injuries.

Now fast forward to about 5 years ago. Things beyond my control sent me into a depression. I was stressed and depressed. At this time, I noticed my whole body was aching. I could barely get out of bed. I was like , "This is different pain". It wasn't isolated just to my knee or my fingers or my shoulder. It was my whole body.

Now, today, my life is great. I am no longer depressed. My body no longer hurts. My knees and fingers do, my shoulder still hurts, but I know why. To me, it's normal. But my body feels great. It doesn't hurt for me to get out of bed.

Oh, I didn't take anything for my depression, my life just got better.

originally posted by: galaga

originally posted by: Khaleesi

originally posted by: TinySickTears

originally posted by: Khaleesi
a reply to: CmdrZero

I've heard of Lugol's and due to your personal testimony, I will be ordering it tomorrow. Did you have sleep issues and if so did the Lugol's help that issue? Honestly, I have just about given up. If it helps even just one of my symptoms it will be worth it. After I was diagnosed, I googled Fibromyalgia because I worked in the medical field and had always been told that it was a crap diagnosis. I had no opinion on it until I was diagnosed. I was shocked at the symptoms that I had. I had every symptom to some degree. Some more so than others. To describe it as debilitating is an understatement. Thanks for the tip.

hey man more power to you. get the lugol and i hope it works but i have a pretty good feeling you are going to be in pain.
my rec would be go see a doc and get your meds right.

it is not just opiates either. those are the main ones but there is neurontin off the top of my head. other nerve pills.
millions of people take this # for a reason.

i dont know. personally i trust my doc and the WHO more than people raving about lugol.
no offense to anyone....i just dont get it.

either way. hope you feel better. quality of life goes way down with a diog like we have but it can be managed so whatever helps you you should do it......cant hurt

Read my first post in this thread. I've been diagnosed for more than 15 years, I've been on more meds than I can count. Sleeping is my main problem. None of the meds make it better. Fatigue is my next problem followed by migraines and right on down the line with every symptom associated with fibro. I've been on single meds and cocktails of meds to the point that I had 2 medication induced grand mal seizures. Do you really think I haven't tried everything the doctors have available to them? Am I in pain? Yes. I will not go on prescription meds again. It made it worse for me. Some people get results from meds. I didn't.

Are you a depressed person?

This is just my opinion, ok, I have suffered many injuries as a young adult, broke many bones and blew out both knees. I skateboarded most of my life and played many sports including D1 rugby.

As I got older, I was in constant pain, but I knew why. I lived with it. I knew why I was in pain. I had many sports injuries.

Now fast forward to about 5 years ago. Things beyond my control sent me into a depression. I was stressed and depressed. At this time, I noticed my whole body was aching. I could barely get out of bed. I was like , "This is different pain". It wasn't isolated just to my knee or my fingers or my shoulder. It was my whole body.

Now, today, my life is great. I am no longer depressed. My body no longer hurts. My knees and fingers do, my shoulder still hurts, but I know why. To me, it's normal. But my body feels great. It doesn't hurt for me to get out of bed.

Oh, I didn't take anything for my depression, my life just got better.

Your symptoms had nothing to do with Fibromyalgia..Fibromyalgia symtoms are mainly in the hands and feet. A butning ban that makes the effected ares red.

Children can even be born with this condition. My wife got it through pregnacy, and thsts why it went before birth.

Its a horrible condition and painful. My wife wad pretty much bed ridden for three months. The only way she could ease the pain was to hold a frozen bottle of water.

Its a condition i would not wish on anyone.

a reply to: Jay-morris

Sorry to hear anyone with Fibromyalgia or late-stage Lyme, very debilitating diseases. Luckily I only had Lyme for a few months before I got to the bottom of the case myself. I'm surprised by the amount of people that have never heard of it, even myself months back.

Lyme can be passed through to children. Bartonella (Lyme co-infection) causes a lot of pain in the feet similar to plantar fasciitis. I got this a lot. Read my posts a couple above I do think a lot of people with Fibro actually may have Lyme. Very worth exploring if you already haven't. If you already have, as I said test are inaccurate so should never be taken as a conclusion. Look at every single symptom your wife has. Headaches (what type? - do they feel like pressure headaches, frontal, back of head), brain fog, muscle twitching, red eyes, red streak like rashes. No matter how little. Some of these things can be specific to Lyme.

originally posted by: ChesterJohn
Anyone else using Gabapentin for their fibromyalgia?

If you happen to live in an area where certain controversial organic medications are legal, I would recommend that. It will calm the pain and allow you to sleep like a baby. The more synthetic you get, the more likely there will be nasty side-effects down the line.