Odd Nerve Sensations in Fibromyalgia & Chronic Fatigue Syndrome

Vitamin B12 deficiency is a common cause of paresthesias, fatigue, depression, and an array of neurologic and psychiatric manifestations. It should always be properly ruled out when a patient is suspected to have chronic fatigue syndrome, fibromyalgia, mental illness (including post-partum depression/psychosis) and many other neurologic disorders. Patients should have a serum B12, methylmalonic acid, and homocysteine test before starting high-dose B12 or receiving injections—to determine if B12 deficiency was the cause.
Unfortunately there is a major knowledge deficit in the medical and health care community regarding B12 deficiency. Out of frustration I co-authored the book, “Could It Be B12? An Epidemic of Misdiagnoses,” Quill Driver Books, 2005, with Dr. Jeffrey Stuart.
Billions of health care dollars and more importantly millions of lives are at stake because many health care practitioners are not contemplating or ruling out B12 deficiency properly. They tend to forget that B12 deficiency is a true medical disorder, and can be caused by a variety of reasons. Minot, Whipple, and Murphy won the 1934 Nobel Prize in medicine for their life-saving discovery, yet 75 years later many patients are not being treated or are being misdiagnosed. This is particulary happening to older adults greater than 60. All elderly who fall should always have B12 deficiency ruled out—but are not screened for it. How many hip fractures and other fall related injuries are caused by untreated B12 deficiency? The medical journals report approximately 15-20% of people over age 65 have a vitamin B12 deficiency. However, B12 deficiency does not only strike the elderly.

Sally Pacholok, R.N., BSN

yeah I have those symptoms all the time all over. The itching drives me mad, I have my back in scars from scratching. my hands burn especially when I use them alot and feel like my nerves are crawling all the time. One thing I noticed and don’t know if anyone else has experienced is I get sharp jabs like some one is sticking a needle in me in different areas of my body like my belly, feet, legs, sometimes face. once I rub it, it leaves for awhile but it hurts and is weird.

Sometimes i get patches of skin (usually on my face, arms, or legs) that feels sunburned. It lasts for a day or so.

meme,

You’re not alone! I get those a lot, too. They make me jump most of the time, and sometimes scratching or rubbing makes the whole area hurt.

Yes. I get all that too. I remember once sitting on the toilet & feeling like someone tapped me on the back. I think I jumped a few feet! What about the ripping feeling in your muscles near the joint? Is that in the same category? I also occasionally get what I call a ‘twang’ where my foot, or ankle, or wrist or whatever will act as though it is broken. Xrays show nothing. Wrapping it & staying off of it for a few days helps. Then I will wake up like the 3rd or 4th day & it is like nothing ever happened! What?! So I’m thinking that maybe most of us ARE a bit crazy only because having all these unexplained things can really drive a person mad, can’t it? But if we are smart, we laugh about it (when the pain is gone) because we know that going to the looney-bin isn’t going to solve anything.

The bottoms of my feet hurt! When I lie down or sit with my feet up and then stand up the pain is so awful, I can hardly walk. It also starts when I am grocery shopping, or whatever. It is getting worse – more frequent and more severe. It’s like walking on rocks and the rocks are IN my feet. The whole bottom of each foot hurts. Anybody else???

Adrienne, your “weird” symptom with your calf/let is not too weird. Do you have Netflix? You should Netflix this Nova program on the brain. At least you can visit this website and read about brain re-mapping:

http://www.pbs.org/wgbh/nova/mind/note_nf3.html

This one guy lost a limb and yet he FELT the limb when he was shaving. Apparently, the brain has a “map” of where certain “places” on our body are. If we lose a limb, the brain is starved for INPUT, so another part of the body that is close in the brain’s “body map” will start taking over the spot for the missing limb and when you touch the re-mapped part of the body, you can feel it in a missing limb.

It’s hard to explain, but it’s REALLY fascinating! The Nova video is great at making this all make sense and I bet you can rent the video at the library if you don’t have Netflix.

I get the creepy-crawlies and I’ll jump and nearly scream because I think a bug is on me!

I was sitting down and I felt this pretty strong distracting sensation on my foot. I looked down and there was a strand of hair against my skin. The feeling made it feel like something much more substantial was touching me!

I sometimes get “bug bite” sensations.

The neurologist thinks that my tingling fingers and “heavy” feeling in my left arm may be due to a pinched nerve in my neck. She wanted to put me on neurontin, but the feeling just comes and goes so much that I don’t want to be on another med unless I have to.

I’m sooo glad to see an article on the net about this problem, so thanks a million for the info! I have FMS and have my own set of weird sensations. My feet are the worst. They feel tingly and cold almost all the time when I’m sitting down. I even thought I had a circulation problem until my pain Doc reasurred my that I am too young for that and explained that the symptom is a part of the FMS puzzle. I also struggle with other skin sensations where it feels painful if I put on a bra or elastic waist pants that aren’t way too big for me! Fortunatly that comes and goes, and most of the time I can wear stuff thats a little too big.
I haven’t tried using the capsaicin cream yet, but I may try it on my feet.
Thanks again to our guide for keeping us informed on these issues!

To Judy: I’m sorry your feet hurt, but I’m glad to find that I’m not the only one! My family doctor just thinks I’m really weird with all my “symptoms” and clumsy accidents. I also went through a time, maybe a month or more a few months ago where if I got up to use the bathroom at night, both of the bottoms of my feet hurt SO bad I could hardly stand to put pressure on them. About 10 years ago while wallpapering my kitchen, I touched a screw on a plug in with a stainless steel knife. The wallpaper was wet so I got the shock of my life, knife flew across the room, my eyeballs felt like they were literally outside my eye sockets and the lasting effect for a few weeks were that it blistered both of my feet and burned them. My doctor says that could be related to now, but I think it’s just another Fibromyalgia symptom! Also, for years, every so often, I get what I call “exposed nerves feelings” from the waist up and it has always only been on the right side. You could draw a line down the middle of my body and mark it. Doctor said he’s never heard of that either. In the past, my right side of my face and right hand have gone numb many times. Neurologist, after making me go throught every possible test said probably TIA’s (Transient Ischemic Attacks(mini strokes) and Stress induced. Who knows. I have 2 toes on left foot and 3 toes on right foot that hurt so bad sometimes I almost cry. They swell some, turn red and are starting to curve weird at the joints. Ruled out Gout and everything else. What a strange thing Fibromyalgia is. I never knew until I found this website that I wasn’t the only person in the world like the doctor tries to make you feel like, that has all these weird symptoms. I’ve almost quit mentioning anything to my husband or 2 grown daughters, because I know they think I’m a hypochondriac!

I have FM & was reading about everyones weird sensations & symptoms and wanted to comment on mine as well: I have had everything mentioned above….burning aching feet, tingly & numb feelings in limbs, ( but mostly my calves are numb and its very noticeable when I shave and cant feel my skin…I also get very sensitive skin to the point where it hurts to just lightly touch my skin in certain places, usually on the inside of the wrist and arms… I get shooting stabbing pains everywhere at diff. times,and of course all the IBS,GERD, dry eyes & mouth,muscle pain and even face pain ( hurts to put my head in my hands)my pain is deep bone and muscle pain daily everywhere……often radiating…
but I also have arthritis in my neck & back , facet & osteo, & degenerative disc disease, spondylolisthesis, & mitral valve & even a blocked salivary gland…..I dont know why But I feel all of it is related somehow…
…theres so much more but I can never remember all of it at once because there is so much of it…..one thing I wanted to mention is that I had a live blood cell analysis last year and it showed a B12 deficiency as well as numerous yeast markers and other bad stuff……but what was so weird is that I was taking a large amount of sublingual B12 daily prior to the test!! And I STILL showed as deficient. That was really strange since it was taken under my tongue and not in the stomach… but I have a ton of gastric issues and also think that my FM is related to gastric stuff somehow…( like my not being able to digest things properly & nutrients not being absorbed for some reason) I also wanted to mention that I feel the FM may be related to yeast overgrowth in the body ( not in the ‘usual’ places either…….because it can grow in our organs , etc and cause many terrible and similar symptoms. And last I wanted to say that I believe it is never ONE thing that causes stuff to go wrong in our bodies….that it is numerous things accumulating or going on simultaneously….has anyone out there have all the stuff I mentioned?? If so Id love to hear from you!

I am just coming out of a three month period of extreme toe pain. I could hardly walk. The pain didn’t even let up when I lay down. The doctor tried to tell me it was arthritis but I know better. Sure I am willing to concede that I might have some arthritis but why would the pain move from one set of toes to another, and then appear on both feet then disapear on one foot? Weird. I’m on my 15th year of being diognosed with FM/CF, and I still get confused. Several months before the toe pain, I had foot pain. The bottoms of my feet felt like they were on fire. These pains come and go, sometimes for months. My current ache are identical sore spots on the upper part of both arms. They feel like bruises, like someone punched me really hard. I seem to cycle through pain spots and mysterious itches that feel like bugs crawling under my skin. It’s maddening at times. I am thankful that I do experience periods of relief – when symptoms disapear or die down for awhile and I am able to feel normal.

Marcella, I too have periods of some relief….and also the pain radiation as you mentioned. Feet, legs, shoulders get really bad,and arms..and especially the arm area as you said that feels bruised….this is the strangest stuff ever! When I a feeling really bad the flu like symptoms appear again thankfully not very often. Sometimes the pain everywhere isnt as bad and thats a Godsend. While I feel bad everyone here is in constant pain.I am glad I have someone who understands………………Prayers to ALL of you!!

Wow, that Nova site explained a lot. I used to have the sensation of little spiders crawling in my right eyebrow. Knew it was just the hairs moving but odd feeling. I was going through a series of spinal injections of steroids (one doctor was sure FM did not exist and this would solve my problems.) After one session I told the doctor that the spiders in my eybrow had dissapeared and he looked at me like I was crazy. That was when I realised he had no idea what he was dealing with! Anyway I have had a lot of the above mentioned pains and strange feelings. A month ago I burned the top of a finger in the oven, not badly, but since then I get the feeling there is a hair laying across my hand and I keep trying to pick it off. I have had bottoms of feet feel like I was walking on glass for years and it finely went away. I have sharp pains in my legs that make me jump and cry out all the time, only for a second. Sometimes when I evacuate my bowels there is a sharp pain in the middle of my back on the right side, same spot all the time. When I was much younger I had sensations of warm water running down my legs. That lasted for decades, before I ever had the fibro symptoms. I have had restless legs occassinaly all my life, then years later I would get the same feeling in my stomach, and just recently I get the feeling all over my body, very uncomfortable. But it will go away eventually. I never know why they goe away. Some of these weird things last decades and some years and some just a week! I can track what causes flare ups but not these nuerological things, very frustrating. Glad to know finally I am not alone!

To Heather:
I have that problem too, with the stray hair feeling like something more significant is on my skin. I can’t stand to have anything touching my skin, it drives me mad. And then there is all the involuntary twitching which we have no control over. It is all enough to make us insane : )

I also get the creepy-crawlies on my legs. During the summer I am always thinking bugs are on my legs…and the feeling of burning hot wires on the soles of my feet at times. A stray hair on the back of my neck or arms drives me crazy, as it feels like bugs…yuck!
Having found much that works.

Make that haven’t found much that works.

I was wondering what kinds of meds anyone takes and if one type helps all this better for anyone than another?? And Id like to share what I do……I am trying to do a more natural approach, or at least starting to. Like eating better foods….and paying attention to what bloats me out real bad…I thought I may have had celiac but now think I am sensitive to certain foods, chemicals, etc…..I am trying to eat more raw fruits & veggies…organic is best so I dont eats a lot of pesticides, etc…..organic meats too so we dont get a lot of hormones, etc…. with FM we tend to have allergies & sensitivities.( I am allergic to many many things..) I take 2 Benadryl every night to help with sleep…..because prior to that I was awake all night…it makes me drowsy enough so even when I get up my usual 1-3 x night I can feel relaxed enough to fall back asleep fairly quickly. There are no side effects for me in doing this and my body got used to the Benadryl quickly and it doesnt make me anymore sleepy than before the next day. I always have had the fatigue….I try to take daytime catnaps…they really help. I truly believe the Benedryl has helped me in more ways than one with this …my sinuses arent bad anymore & they were soooo bad b4 that I couldnt breathe well through my nose & used a lot fo diff things….now I dont wake up stuffed up and can breathe well all the time. Its really amazing. I think the constant flow of Benadryl helps my body to not produce so much histamine as before…..

I take Cymbalta for pain, wasnt depressed really before so didnt need it for that but after awhile it helped immensely with pain. And outlook. Was taking Neurontin before but it made me too woosy/ dizzy and high feeling…worse foggy brain than ever!! I felt a thousand times better after I quit taking it. I read a lot about Lyrica which is related to gabapentin and I would NEVER take it!!!! I am thinking about trying tio get off Cymbalta too since it is supposed to be bad for your liver but I have had no side effects to speak of and my liver is fine so far and its been many years since I first started taking it. But it is very expensive and there isnt a generic brand…

I quit taking other types of pain meds and take Excedrin once in awhile. I have gained a lot of weight and need to get on an exercise plan but am afraid to hurt again really bad as before…..maybe start with walking again.

I take Solgar brand vitamin D3 gel caps 1000 iu daily…..it is a fantastic supplement to take!! Please check into it if you already havent ……I also take Nordic Omega 3 oils, a good B complex from a good health food store, and North American Herb Oregano Oil, & am always researching new things for FM….I know malic acid is good but havent tried it yet as well as a few other things. The oregano oil is for any overgrowth of yeast or bacteria that may be in my system……but be careful with everything and research it well….all brands are not created equal. And read to make sure it is right for you.
If anyone has any ideas to share please let me know????I think much of my trial and error stuff has worked well for me….and maybe it will work for others too. I also read a lot of self help and spiritual books ( not necessarily religious)…it helps adjust my perspective and keeps me in check mentally……..

“WHEN YOU CHANGE THE WAY
YOU LOOK AT THINGS,
YOU CHANGE THE WAY
THINGS LOOK.”

…..I forgot to mention the most helpful thing of all for me……myofascial release. We FM folks tend to have many trigger points as they call them….or tension balls in our muscles as I call them…..and they hurt & pull & ache…..after I started taking Cymbalta I was able to get massaged….and that alone helped enormously….but if you can find anyone who can do myofascial release and work with you on that so it is tolerable the results are absolutely wonderful!! But you must remember to drink lots of water and breathe!! ( I drink distilled water only) For me, it is a ‘good pain’ ,if you will…..and after a session I feel incredible! At first it was hard to get used to cuz it hurt….but as I said it became a ‘good’ hurt…..and took away so much pain and tension ……

Anyone have pain on the sides of your big toes? Sometimes tingly when the touch another foot or the floor. Depending on the shoe..alot of pain, too.

Thank goodness I read these comments ! I have many of these feelings , and now I know I’m not losing my mind . I’ve had some Doctors look at me like I’m from outer space when I try to explain these sensations .

Kaylee: Yes, I have all that too. I also have the same suspicions that you have. My feet always hurt & keep me from doing most shopping so I let hubby do it. I wonder if doctors ever read these??? Because it is interesting to know that alot of my symptoms that I thought were just something else, everyone else has too. I am still experimenting with natural remedies but the best I’ve found so far is Chiropractic adjustment followed by massage. Accupunture is an absolute MUST if you have vertigo.

Reading these make me realize I’m not nuts. Does anyone get weird sensations in their stomach –like when you’re scared- & it flows upward. I’ll feel it in my arms at the same time. It’s very uncomfortable.

I have no idea what’s going on with my skin.. it started last night when my boyfriend was giving me a foot massage. All of a sudden the skin on my feet felt really prickly and sensative when they were touched.. and it hurt to even walk on them… then my hands started feeling the same way. Touching things feels really weird.. and not at all normal.. now the feeling has spread to all over my skin.. on my whole body. As long as Im not touching anything.. or there’s no pressure being put on my skin.. then it doesn’t fell bad.. but just taking off my clothes and feeling the material rub against my skin it feels so sensative that it hurts… it’s really hard to explain.. but some of the feelings some of you have described are like how my skin is feeling. I’m going to make a doctors appointment asap.. I’m really scared… It feels so strange.. and I don’t like it. I feel uncomfortable all the time.. touching anything or when anything touches my skin.. even lightly.. has anyone else felt this way?.. where the feeling was all over their skin?

I have had Scalp problems for 2 1/2 years. It feels like scalding water has been poured on my head and then a bunch of needles poked all over my head. It radiates down my forehead, sinuses, into my jaws creating severe tmj. When this occurs several times a day, I just tighten up, tense up and suffer terribly until I can get some relief. I was put on Lyrica about the time this started. It really helped me for a while and then the side-effects started…weight gain, libido gone, etc. My massage and adjustments helped, also. I take muscle relaxers – Flexeril and Robaxin – alternate. Sometimes I end up feeling it is more sinus related and take sinus pills with the muscle relaxers. I started getting botox treatments in my scalp/temple/neck areas about 2 years ago. It has helped a great deal to relax the muscles. Sometimes I brush my hair hard or scratch my scalp with my long nails or poke the nails into the scalp hard…it is just random what will help one time and not the other. Heat helps the most. I want to shave my head and rub muscle rub all over it.
Has anyone else had the SCALP pain? I take Cymbalta 120 mg 2x day. I also take Voltaren for my awful arthritis in neck, lower back and hands. I have Ultram for getting through each day – and then when the pain is terriblke, I use Lortab 5. It helps me when I walk and am busy doing many active3 things.
Please someone cokmment on the burning scalp.

WOW. I have never seen so many of MY symptoms and weird issues in one place. I’m NOT nuts. Ok well maybe a little.

Lovely fibro. Let’s start at the top and work our way down. I had scalp issues about 10 or more years ago. Doctor could find nothing wrong with my scalp or face around the scalpline. When I was leaving the office, the receptionist said “I have similar thing – try baby lotion.” Which I did and it soothed. But I still had that painful scalp off and on since then. But figure oh well, just me. (that’s our mantra: “it’s just me”)

Had some serious check pain events that led to Holter Monitor, stress tests, blood tests, you name it. Heart is just fine, ty. Sigh.. “It’s just me.” In hindsight, probably chrondoditis (sp) of lovely Fibro.
Fibro also gives me lovely rib cage pain too. Feels like I was in a boxing match.

Started feeling like I was getting old age achies. But thought gee I’m only in early 50s. Hurt to walk to bathroom in night or early morning. Other times too. Sometimes feels like I walking on rocks. Felt like legs were like tree trunks.

Started feeling like this during the day, at work. Would stand up and feel like I gained 20 lbs of water in one hour.

Spatial issues when driving, night driving issues, all over muscle pain, memory loss, confusion. Forget familiar words, lose train of thought mid-sentence. Then had osteopath treatment for low back and oh that was the wrong thing. After 15 treatments – oh you have fibro. Huh? So, had major fibro flare from that osteo treatment… took months to get over it. It hurt to have a fan blow air on me. Sheets hurt my skin.

Doc put me on Cymbalta for fibro, Celebrex for Osteoarthritis. Tramadol for really bad break through pain.

So there’s fibro, osteoarthritis, spondylolisthesis (spinal stenosis? we’ll see), prediabetes. Facet joint problems and degenerative disc disease. Dry eyes so bad I can no longer wear contact lenses. Be sure you eye doc knows you have fibro.

Tried water aerobics cause less stress on joints but it caused a flare. Sigh. Might try it again and just not try so hard to be “normal.”

Insomnia is another giftie of Fibro. Sometimes the overwhelming fatigue in the middle of the day sends me to take a nap. I’m my dad already!!

I love it when someone says oh just get up and get active. GRRR. I would LOVE to. I’m retired and have all the time in the world but none of the energy. The pain is so bad from just standing in kitchen to cook or wash dishes… and that’s from the spondylolisthesis most likely. I know weight loss would help but it feels like a vicious circle. I “used to” do a lot of walking, exercising, dieting, etc. I’m sure I’ve left something out cause my memory is not what it used to be either. It just takes a bit longer.

Oh yes and cannot work now even if I want to cause driving is difficult, not knowing what store I just walked out of, looking at words on page and seeing different words. Good grief. The gift that keeps on giving.

But NO SYMPTOMS ARE TOO WEIRD. and we are not alone as long as we have each other.

The best treatments I have tried, as well as heard about is this combination:
A complete whole body detox,
liver cleanse (with kidney and associated)
amish anti-parasite remedy
colon cleanse
epsom salt baths
caster oil packs
non yeast-diet (candida is a major contibuting facvtor in many caes)
non processed sugar and vinegar diet (both contribute to candida growth) while dtoxing very little sugar even organic should be eaten, except for stevia or agave.
get mercury fillings removed
take care of any possible tooth or other hidden infections.
check for any toxic exposure and use foot pads and zapper product to remove them. Also use zeolite drops to safely naturally chelate in low doses any toxins.
Eidolon the foot patch company will give you free toxicity tests.

Read Lyn Grabhorn’s book Dear God! What’s Happening to Us?
If you believe whats in the book or not, do yourslef and the world a favor by at least saying the proclamations aloud. There can be no negatives from that at the worst, and only gains at the least.

Consult with a shaman, even by phone or online to see if there is any soul trauma or marks on the aura which get materialized in the physical body. Alberto Villoldo is a P.H.D. in medical anthropology as well as a shaman, the best of both worlds of western physical science and the indiginous sense of spiritual undestanding.

These three steps have fixed 99% of my symptoms, as well as my natural health practioner at boddybrilliance.com

The key to these unknown conditions are that many causes take place from the spiritual soul link to the mind subconscious and body, so fixing only the physical may provide good results, but completing the rejuvination, eliminating the causes, which means a total and absolute remedy requires readjustment and repair of the spiritual, mental and physical aspects of a person. It can be done, it just takes a shift in ways of thinking, a willingness to do whatever it takes to return to being a fully actualized human, and accept nothing else-which means destroying negative thought roots and years of programming. It tales mental fortitude. There are people who have done it, you can talk to them! The bodybrilliance.com website will be up in May so look there for info and ask away. Anyone wanting more info ask here as well.

Judy and Gayle,

I have had the same problem with my feet and it comes and goes. Last summer it was so bad I couldn’t stand it any longer so I went to my podiatrist. I had a Morton’s neuroma, which is a small tumor on a nerve. I had this removed and haven’t had the pain return. I have also had the Dr. do a procedure where she froze a nerve in my foot which also has helped. It was painful during the procedure and a day or two after but I have had good results. You might try checking with a Podiatrist who knows a little about FMS. It has made a difference for me. I’m not saying the pain has gone completely away but it isn’t nearly as often or is as painful. Also, try to stay away from shoes with much of a heel this aggravates the problem. I had to go to a good tennis shoe that gives alot of support, such as New Balance, I also now wear orthotics.
Good luck to you both.
Gina

My comment is more of a question. Has anyone here ever had chest pains so bad you hear your bones making snapping sounds? I started having all kinds of pains a few years ago, then falling ill all the time. Doctors kept telling me it was Mono, at first I thought, ok, but then it was never going away, and then the docs would say I was doing too much and my body was not healing itself from anything I would catch. Then more pain would follow, in almost ever inch of my body. They sent me to specialist for carpal tunnel syndrom, knee specialist, x-rays on every joints, bone scans, you name it they have sent me for it…but now reading here, I have almost every symptoms mentioned here and more.
Also, I find it very hard to do my every day work load, and keep a job, because I get so exhausted all the time. I am off work for a bit to see if things will get better, but to your opinions, do things get better?
I’m only in my early 30’s…what should I expect from this? Anyone with helpful answers???

Thanks, Jas

Jas,

I’ve had excruciating chest pains from costochondritis, but I’m not sure what to make of the snapping sounds.

The virus that causes mono, Epstein-Barr, is one of several that are believed to trigger ME/CFS in some people. It’s hard to say, though, either way — it could be that your doctors are right and with enough time and rest you’ll get better, or it could be that you’ve developed a chronic condition.

Even in the worst-case scenario, though, know that you can improve your health. Many of us, while not cured, make huge strides and regain most of our functionality. The most important thing is that you take good care of yourself now, and if you’re still not recovering start trying different treatments to see what works for you.

Hi again, Does weather severely affect people with FM or ME? Its been rainning for the last couple of days and the heavier the humidity the more pain I seem to be getting. It bad enough that its making sick to my stomac and the migraines, pain throughout my body… I feel like if someone touches me hard enough I may brake like glasse…is this typical? I’m trying all kinds of pain relievers and not helping much…any advice?

Jas,

Yes, changes in the weather can affect those of us with fibromyalgia, as well as some people with arthritis and other pain conditions.

Sorry you’re not having luck with painkillers — have you tried supplements? If not, here’s an article to help you get started:

Supplements for Fibromyalgia

I have been diagnosed with fibro. But I noticed a yr. ago that I have tender/soft spots on the back of my head. It comes and goes. When it is there, I can barely blow dry my hair. Also, I can push in because the area is soft. I also have a burning sensation down the side of my face, like a severe sunburn that last a couple of days. I also noticed when I am wringing out a cloth, it feels like my palms are burnt. It also last a day or so. I don’t know a “cure” but I have been researching and this could also be a symptom for ms.

I,also have ”FM” for 16 years.im tought on pain .not taking medications. Itook cymbalta once and almost died my heart started beating so fast i thought this is it, i cried for days. another madication i dont remember the name it was years ago,i had suicidal thoughts, so now i’m trying natural herbs. like magosteem it helps somewhat. i get muscle spasms every week on my left side, on my neck, back. the bottom of my hurt so badly i can’t stand for a long period of time. i also lost good jobs because of ”FM”.its depresing that you can’t do things that you want to do or you enjoy doing.i feel worthless i’ve been in this pain for so long.this is the life of ”FM”. the doctors dont know how to treat ”FM”.exercise makes it worst, next day is bed day.when have a good day, i feel normal then when the pain kicks in its back to painreality. the older a person gets the worst it is.

I often wonder when it all began, was it stress years of that diognosed with depression in 1989 after a series of awfull events which were nothing to later on. Maybe an emergencey c section & womb infection & sudden death of my father in 1987. My ex husband having an afair in 1980 when our adopted baby was less than a year old or being told he couldn’t produce children in 1975 which led to adoption. Or was it knowing I was adopted too maybe my illness is hereditery. Was there ever a time I felt right? not really.
IBS 30 years, stress, anxiety atacks tiredness 21 years, numness in limbs years. Fear due to a violent partner then living on my own with 3 sons, 10 hours of brain surgery for my youngest son at 16 who is now fine thank goodness. The death of my middle son 3 years ago, suicide after years of mental illness.
Or non of those things, was it the fall down the stairs twice, other falls with some very severe jolts to my body and head, stress makes me very clumsy, a car crash, a breast abcess.
Sorry to go on but like most fibro sufferers we search back & forth over the years but never really find an answer, but just know that we have felt like crap for years. So what came first? the chicken or the egg!, the fibro or the fall. No wonder we feel like we are going mad, I have most of the symptoms that you all talk about, water running in the legs!, I had water running in my head for about 3 years, to this day everything crackles, its like I can hear my brain working. Wierd. I have the radio on most of the time to block it out even at night. tingling running all through my veins, burning everywhere, yep it goes’ on & on & on.
And what do we get ‘you’re looking well’ another sneakey thing about our illness most of us look pretty good. It is sneakey it creeps up, we get so used to feeling ill that we give up trying to explain to people & just get on with it, because it sounds as if we’re making it up & its all in our minds.
The relief when I was diognosed was overwhelming & I was in shock for weeks as I’d not even heard of fibromyalgia I knew I was ill but a chronic illness!!! woah! Now my husband, family & friends begin to understand, well as much as is possible with no disrespect, I can pace myself, I worked all my life through everything but stopped when my son died, But even that wasn’t entirely it, I was sent for controlled exercise 2 1/2 years ago, done as I was told 3 times, that’s when if I thought I had pains before things really set in especially those horrible pains in the bottoms of my feet that some of you talk about. Yoga, off I went & was wiped out for 3 days after.
So on we go in the glorious world of fibromyalgia, paceing myself, resting when I need to & not when it fits in with other people, learning to say no to arrangements instead of worrying about letting people down, which means I can enjoy things more when I am up to it. I still overdo it at times so I rest or stay in bed especially on the days when its hard to get up at all.
Its not a case of sinking into the illness, its being able to go with its flow. Life’s not without pain & tears but I’ve found fighting it just isn’t the answer.

I get the oddest sensation, almost like my skin burning, right at the top of my stomach. weird thing is that it comes and goes a lot but does always seem to get worse when I’m worried about it so I’m sure that it’s anxiety or stress related. It’s only one small area that I feel it.

I know this might seem simplistic, but often things are simple. I have wondered if fibromyalgia, polymyalgia, and possibly Chronic Fatigue could have their genesis in extreme stress? It seems to me, from the folks I know with these ailments, that the stress is so severe, the muscles almost seize, like a Charlie horse all over. Once they lock, unlocking them would be slow and difficult, I would think. The nerves, because of their proximity, would also become involved and might manifest any or all of the symptoms mentioned. It is just a theory, but it might be worth exploring, if not in the medical world, by the individuals who are suffering from it. I hope each of you finds your answer.