Anyone Here Also Have Fibromyalgia?

Post Reply New Topic

Me too some times changing my diet helps but the IBS is really hard to deal with.

I have an infectious disease specialist that I see. He was on the team that "discovered" chronic fatigue syndrome as SOMETHING back in the 70's. He continued working with those afflicted. People come from all over the US to see him. He prescribes Valtrex for me. It's an anti-viral for herpes. People take it for shingles and other types of herpes. You can google "stealth virus" or "HPV6" for more information.

He tells me that the virus causes CFS. Fibromyalgia is the body's response to the assault of the virus. You body can also respond with fibromyalgia to surgery, a bad accident or some other kind of trauma. When the assault is a chronic illness, fibromyalgia becomes chronic. This could explain why fibro is such an individualized illness and some people get over it and some don't.

The way he put it to me seemed like he was mostly just guessing based on his experience. I can't deny the efficacy of the Valtrex in making my symptoms disappear, but I don't know how long I can continue to take it without long term side effects. If I stop taking it my symptoms begin to return. I don't like to take any drugs.

deleted

Last edited by TheAnomaly on 20 Feb 2012, 5:54 pm, edited 1 time in total.

Yes, I have diagnosed Fibromyalgia and Chronic Fatigue Syndrome. Also have bronchial asthma, and diagnosed soft Bipolar Disorder by a psychiatrist and a psychologist (which I think is a misdiagnosis), I haven't been diagnosed with Asperger's officially, but my best friend was diagnosed with Asperger's and he talked to his psychologist about me, as they both believe I am highly likely an Aspergian too. And at first I was very doubtful but now I am 99% certain. But I will have to bring it up with my GP and see if I can get a referral to a psychologist, though I am afraid to as last time I went they tried to get me to take all sorts of more potent drugs, and didn't like the fact I stopped the lithium although it was affecting my health even more. Also psychiatrists and psychologists are narrow-minded and believe FMS/CFS is not a real condition but the result of an underlying mental illness, which I deeply disagree with.

I am happy for anyone to PM me, to talk about these illnesses or Aspergers.

My symptoms began after having shingles about 10 years ago. Apparently there is an anti-viral drug which you can take in the early stages of shingles which helps but when I went to my GP she didn't believe I had shingles - apparently only "old" people get shingles

When my 2nd son was 4, one of his little friends had BAD bouts of shingles. Her mother was beside herself with worry for her child's sanity. Imagine how difficult life would be for a 4 yr. old who had to spend a quarter of her existence in extreme pain. It's not an old person's illness. You can get it if you have chicken pox. Both are herpes viruses.

Do you still get them? Stress brings a lot of this stuff on.

I have fibromyalgia (and aspergers, and PTSD)

I have spent the last 10 years doing an insane amount of research on it to try to make it go away.

i will share my conclusions. if others have other theories or ideas, please share yours, and don't just attack mine, please.

all of us have a fight/flight/freeze reaction to stress.

when a person is under stress the body reacts in a well recognised set of ways - adrenaline flows, energy consumption goes up, heart rate increases, blah, blah, blah

many animals defecate or vomit - no point in spending energy digesting when that energy could be spent running away and surviving

there are huge number of mechanisms that are triggered in the body

one of the things that happens is that your body uses up all the blood sugar (glucose) in your blood stream. when that happens the body starts using up the glycogen in your muscles. when that supply is exhausted, the body secretes cortisol which breaks down muscle tissue into sugar

the body essentially begins a shutdown and goes into a different mode of existence

if the stress lasts for months and years the body goes into a full shutdown of a variety of functions (e.g. sexual desire/sexual function, digestion) and also has adrenal fatigue

endorphins are down, serotonin is way down, histamines are way up, blah, blah, blah - no happiness chemicals

the brain is blasting out hyper awareness chemicals which disrupt your sleep (also part of why serotonin levels are way down) - and the person suffers from all the effects of long term sleep deprivation, yada, yada, yada

and welcome to fibromyalgia

i have explained the above theory to every doctor and specialist that would listen to me, and while all of them have said they could not confirm my theory and conclusions, they have all said to a person that they could find no holes in my thinking

----

what have i done to combat my fibro?

1) exercise - number one and most critical

no matter how much it hurts - exercise, exercise, exercise

bring your heart rate up, then let it come down. that action alone will release chemicals which will counteract a variety of effects of fibro and the above theory (if it is correct)

also, i have taken meditation and body awareness classes/training - if you can have flashbacks of bad things, you can train yourself to have flashbacks of good things - i focus on being aware of and remembering how my body feels after exercise and while i am "coming down" - i use that to induce calmness and to try to counteract pain

2) try to sleep well every night - give up late night surfing and go to sleep. the foundation of mental health is good sleep

3) vitamins

i take vitamin D, malic acid, calcium, and magnesium - all 4 are required in the body to be able to metabolise any of them. i take a multivitamin. i also take a B complex.

most importantly, i take 5-HTP - a serotonin precursor. (5-Hydroxytryptophan) i took SSRIs (selective serotonin re-uptake inhibitor) for awhile, but if you have too little serotonin in your body because of prolonged stress, where are you going to get the serotonin to inhibit the re-uptake of.

BIG WARNING!! ! you can die if you take 5-HTP and SSRIs or SRNIs at the same time. you can go into serotonin shock/syndrome

i have had a small sample of 13 other people who have fibro that i have suggested this too. they all hated their SSRIs and SRNIs and were happy to wean themselves off under doctor supervision and then try 5-HTP. also, my co-habitant fiance used to get SAD (seasonal affective disorder) in the winter and took SSRIs. she now takes 5-HTP instead - no more SAD. she has to go off the 5-HTP in the summer because she gets too cranked

the theory is that if you provide the building blocks for serotonin in your body it will use them and actually start producing serotonin again

vitamin B (specifically B-6 i think) is also a serotonin precursor. 5-HTP AND B-6 together is more potent than just 5-HTP

4) change your diet

go ultra-healthy - lots of raw and steamed fresh vegetables

reduce meat and wheat - follow the food guide

kick sugar and white bread

i have gone from a very serious meat and pizza eating kind of guy to a 4 day a week vegetarian and fish on most other days. i will eat chicken once a week, and occasionally beef.

i am not a "political" or pain in the ass vegetarian type. those folks seriously irritate me. i am a big dude from western canada who has spent plenty of years on the farm.

i love sausage, meat, and great bread. i give the above "go vegetarian" advice not from a political or whiner agenda, but because it helped radically reduce my weight and my pain.

when i fall off the wagon on my diet, i pay for it. i have been doing this for about 7 years now, and have found the same results. i still allow myself the treat of pizza and sausage and steak now and again - but the pain from fibro keeps me on the straight and narrow as soon as it starts again

5) kick coffee and stimulants

this last one kills me

i LOVE good coffee

i allow myself one coffee every 2 weeks

i make my own gourmet cafe au lait just the way i like it, but otherwise don't drink it anymore

if i am trying to reduce my fight or flight/arousal levels, i can't be doing stimulants, hey?

----

i hope my dissertation is of some help

if you don't buy into my ideas, feel free to ignore me

----

i have come to additional personal conclusions about the relationship of my asperger's to my fibro

because we are hyperaware and have sensory overload issues at the best of times, we are likely more susceptible to fibromyalgia if it is indeed based on long term stress - hyper awareness/hyperarousal is part of the usual asperger's/autism profile...

too loud, too bright, too noisy = stress

the end

Last edited by finallyFoundOutWhy on 25 Feb 2012, 11:35 am, edited 2 times in total.

right

forgot one other thing i discovered by accident about 6 years into having fibro

when i am having a major fibro attack, i smoke marijuana right before bed

i hadn't smoked it it about 15 years before trying it one night while attending a Lenny Kravitz concert - and poof - way less pain the next day

i researched how medical scientists were using it in chronic pain reduction studies and followed their model

about 10 minutes before (to avoid munchies) i smoke a pinch (about as much as would fit in a pill capsule) in a pipe (use one with a bowl cover - more efficient burn, less waste). i get high quality, high potency, organic stuff

i have found it reduces "the noise" and sensory overload and i can sleep better

it gives me less side effects than all the prescription medications the doctors have prescribed over the years to help reduce my pain

my doctors say it is less harmful for me than the stuff they prescribe, and especially better than opiods

they would prescribe me medical marijuana but it would cause them a hassle, me a problem with travel to the U.S., and it is only a minor penalty for possession in small amounts in Canada - so it is easier all around to go through my own channels to get it than go through the system. plus the government stuff is really lousy quality. if i am going to damage my lungs, i would rather smoke less better quality stuff than more legal stuff

I have fibromyalgia and PTSD. I speculate that I'm an Aspie, but I don't call myself self-diagnosed. I'll wait for professional diagnosis, if I can get it. I've posted about these things in various ways before.

I think finallyFoundOutWhy has a lot of good stuff to say - in both posts. I use mostly softgel, chewable, and liquid supplements in order to prevent passing the contents rather than absorbing them. I'm generally not impressed with hard-packed vitamin tablets. I get my malic acid and some other stuff from one of those brands of energy shot (you know, the 2 oz. bottles). I can't find another liquid source for all those things, so I have to tolerate the caffeine, fake sugar, and other fake stuff. I take 1/4 of the bottle in the morning, 1/4 in the afternoon, and then repeat the next day to finish the bottle. What a difference between the days when I do that and the days when I don't, energy-wise! Coffee doesn't do it, so I know it's not the caffeine. B complex alone or with coffee on the same day (not within 10 minutes after, though) doesn't do nearly as much, so I know it's got to also be the malic acid and maybe other nutrients in the energy shots (which include B vitamins), though liquid B complex was where I started, and that was a major improvement over doing nothing at all. Most days, I try to avoid additional caffeine, though I sometimes have it once a week or more. Depends on the week - where I am, who I'm with, what I'm doing.

Fatigue is my biggest problem with fibromyalgia, though I do get pain. When I was first diagnosed, over two decades ago, pain was the bigger problem, but that's shifted over the years. I exercise as best I can (which I've only been able to do since starting the liquid B complex about five-and-a-half years ago). Workout pain from reasonable strength training (my own carefully designed, tested, and modified program) seems to displace fibromyalgia pain. Aerobic exercise is a great mood balancer. Meditation is also a great help. These activities use up most of the energy I have in a day, regardless of what I put in my body. But at least I'm not sick with lethargy from near total inability to be active anymore.

I don't tolerate prescription drugs for fibromyalgia well at all, so I can't take them in any amount.

I wonder about the fibro-Aspie connection, on the neurological level. I've begun to think that, at least in some people, fibromyalgia is simply one expression of Asperger's symptoms that can eventually appear, even if it's not among the symptoms that initially show in childhood. Should it be any surprise if the adult picture of Asperger's looks somewhat different from the childhood picture?

I think fibromyalgia is an umbrella term for a set of symptoms doctors can't explain, not a single illness with a single cause. I don't know how true that might or might not be for Asperger's, as well, but I think it's worth pondering.

Fibromyalgia, Elhers- Danlos syndrome, chronic myofascial pain disorder, possibly chronic fatigue syndrome, PTSD, anxiety disorders (GAD, OCD, etc.), asthma, IBS, vertigo disorders. a currently undiagnosed headache problem and undiagnosed severe stomach/ GI tract problem. All of these, including ASD and ADHD, we've been able to trace back to infancy (for some they're obviously present from birth because if you have them, then you've had them since you were born) yet have only been diagnosed between November 2010 and now.

I'm on Lyrica for the FM, but all it does is slightly dull the nerve pain (the one that feels like a first or second degree burn sensation) and I'm thinking of finding an alternative.

Last edited by twich on 24 Feb 2012, 5:59 pm, edited 1 time in total.

I am not officially diagnosed with an ASD (as I have never been tested for one) but have a diagnosis of social anxiety, anxiety and depression. I also have chronic fatigue like symptoms that my drs put down to anxiety and depression because other than an elevated white cell count when this feeling ill first started 8 years ago (which at first my drs put down to a viral infection) all of my later blood tests have been normal. I have never been referred to any kind of specialist other than a shrink for my physical symptoms though (meaning I have only ever been given routine blood tests) which include:

Dizziness (which is worse when sitting up or standing..not just when I first stand up, and eases a bit if I stay lying flat)
Fatigue
Malaise
Vertigo
Brain fog
Memory and cognitive problems that are related to the brain fog such as inability to understand what I am reading, difficulty with word recall, inability to process numbers, feeling confused/difficulty thinking/organising my thoughts, and forgetting what things are called (PN these problems are not there on non brain fog days).
Upper abdominal pain
Feeling like I have the flu
Feeling like I have a hangover even though I don't drink
Muscle cramps/spasm/twitches
Neck pain and back pain
Diarrhoea ranging from watery stools to soft pale foul smell stools that float
Gas
Bloating after eating
Flashing lights in front of my eyes
Chronic migraine type headaches (always on the left with a tender temple with or without severe head pain)
Episodes of dim vision

It can, however, relapse and remit and vary in severity from one day to the next..although it has been present now for the last 2 years without any full recovery between episodes. Usually I have known it remit for at least a few months now and again but it seems to be becoming more chronic and has resulted in my being bed ridden most days. I cannot even pursue my special interest as much as I would like at these times as I feel too ill.

Above are the symptoms that I seem to get almost every time I have had it for the last 8 years, but here is a list of some that have come and gone and don't always pop up. With each relapse I can either get a flare up of one or two of these or get a completely different set of intermittent symptoms to last time...the accompany the symptoms above:

My vision cutting out completely for a few seconds, so that all I could see was a brilliant flash of bright white light. It came back again though.

The hot cold tap thing where every time I put my right hand under the cold tap it would feel scalding hot. The same with taking things out of the freezer. Lasted about a week that one.

Snapping band, electric shock, tingling sensations in my skin, but only in certain patches of skin (ie last time it popped up it was only in a patch of skin on my upper arm on the right).

Burning, ice cold, tingling pain sensations....as above only in certain locations although the location can change between episodes or relapses. Last time it was in my ear and down the side of my face on the left.

One side of my body feeling heavier than the other...lately, always the left. Right side feels normal but left arm and left leg felt like they were made of lead and face was numb on the left side. It was purely sensory though as all muscles worked fine and I could move everything.

Severe vertigo which is worse than normal...ie very violent sensations of sudden movement. Fortunately the time it was that bad I was sat down at the time, had I have been stood up I would have fallen over.

Delayed reaction in certain ways that caused me to burn my leg in the bath. I put my leg in and it took too long to tell me that the water was too hot. By the time I realised and pulled my leg out it was bright red and very sore for an evening.

Muscle twitches that can result in my hand suddenly having a spasm which results in my letting go of something I am holding or accidentally throwing it.

-------------------------

I am getting very annoyed with it all...especially as I don't seem to be getting the remitting periods I used to have which used to give me a break from feeling like death warmed up all time

I have tried all sorts for it from diet, exercise (makes it worse), alternative therapies, medications (antidepressants), therapy...nothing works and most frustratingly it is not even tied to my mood or state of mind at all so I cannot manipulate it by changing how I think or what I am feeling. I can be in a good and feel ill, I can be depressed and not feel ill, I can be anxious and not feel bad like this, or I can be feeling relaxed and feel awful and vice versa.

I am mostly bedridden at the moment. I am not eating properly as most days I am not well enough to get up and cook and I have no one to cook for me, my hosue is a mess due to my not feeling up to doing hosue work and although I study I have to do so in bed at a slower pace than I really need to be studying at.

I feel very helpless in regards to it as my drs think CBT will cure it and I doubt that...as I said I CANNOT manipulate it by manipulating my mood or changing how I think...I know, I tried it...many times.

I just feel ill, ill, ill and am sick and tired of being stuck in bed every day.

I don't think Fibromyalgia is an ASD thing. I think that a certain amount of the population is infected and some of us just happen to have autism - meaning our lives suck even more. I'm going on 24 years with the Fibro-crap. I probably would have found out about the ASD sooner had I not had Fibromyalgia. (Curse you Fibromyalgia!)

I would strongly recommend against Lyrica. It's addictive and very hard to stop taking after 2 weeks. I took it for 18 months and was loopy until I became suicidal. I'm not a suicidal person. I think it's weird how that little pill could have made me so, but I know it did. If anyone wants to stop taking it and is having trouble, you could message me. I have a lot of experience with this and know of a few things to ease the DT's.

For pain, I recommend Boswellia. It's a natural supplement from the Frankincense family and unless you're pregnant, it has no side effects or drug interactions. You have to take it for 8 weeks before it kicks in but I sure notice if I go two weeks without. Check it out. It's fairly inexpensive.

I take a multivitamin. If I don't, I end up in a bad way. I'm also very careful about maintaining a healthy diet. Do any of the rest of you ever feel like you body just isn't absorbing all the nutrients you take in?

On the other side of the coin, I'm very sensitive to most drugs. I can't tolerate anti-depressants, anti-seizures or opiates at any dosage - not even children's cough syrup with Dextromethorphan; unfortunately all that is available in the US OTC for coughs. Even NSAIDS give me trouble if I take them longer than a few days.

I have better luck with natural foods and herbs than drugs. I avoid foods that cause pain and include foods that help what ails me - which is always different.

I know that pain!

I've never taken Lyrica, because I've been too concerned about the combination of my poor reaction to medications and the dangers of anti-seizure medications (which is what Lyrica was originally developed for). Please be extremely careful if you decide to get off Lyrica. I know sometimes people try to wean themselves off medications and then tell their doctors, and sometimes that seems to work out okay. But don't just quit Lyrica without telling your doctor. I'm not a doctor myself, but, as I understand it, it's a delicate matter to get off that kind of thing, and you'll need to handle it accordingly. If your doctor doesn't take such a concern seriously, I'd think about seeing someone else who will help you get off it safely.

hmmmm

i am interested in your ideas about absorption - i will try liquids and see if it makes a difference

I'm on the lowest possible dose right now and I had to stop taking it for several months because I couldn't afford it- I didn't wean off and I had no problems. I think it's the dosage and the individual that it may be a problem for. I do agree with you, though, that if you can wean off of ANY medication, you should. Withdrawal can happen with any medication, prescription or otherwise, and it's not to be taken lightly.

If you take a liquid B complex, hold it under your tongue for at least 30 seconds before swallowing. Then don't eat or drink anything hot for at least 10 minutes. Do drink some water to rinse your mouth, though, after any liquid supplement. You'll need to protect your teeth. Some stuff may be corrosive to your teeth if habitually left on them for any length of time, so make sure to prevent developing a second problem while trying to treat a first by taking care in this regard.

I don't recommend liquid multivitamins or liquid minerals, simply because they taste dreadful.

I've only seen malic acid in hard tablets or in energy drinks. If anyone knows where else to find it as a liquid or in some other form, I'm interested.

If anyone wants to know my brand choices, pm me, and I'll let you know. I just shy away from advertising commercial brands in a public forum. I'm not online every day, but I'll get back to you as soon as I can with my choices and some of the reasoning behind them.