I don't want to rain on the party, but Lyme has become a catch all just as Fibromyalgia has been. Treating with antibiotics has its own risk. Antibiotics are not candy to be gobbled up indiscriminately. Side effects including long term damage is a real possibility. I took 2 doses of Flagyl and developed neurological damage, which took months to resolve. Thankfully I stopped it after 2 doses even though my LLMD encouraged me to continue. Some people who have continued have had permanent irreversible nerve damage and are in worse shape now than before they started tretment.
Further most people with immune illness (CFIDS) find they are chemically sensitive and/or suddenly have developed new and more serious allergies. One dose of Bactrim (sulfa) and I was miserable for 24 hours. It burned my stomach basically.
I would advise caution in buying the Lyme diagnosis. Having a positive Band 41 alone is not indicative of Lyme.
Many viruses can lie dormant or years and then reactivate, perhaps at a stressful time (or in the case of women, during hormonal changes). Some viruses hit and run, leaving the damage behind. This would make it hard to identify the culprit.
I truly understand how you feel. I felt that way for many years. I've been out and out sick for the past 15 years, but I had symptoms that would try to surface for about 14 years before that. Mine began with a 10-day stomach bug. That started the severe digestive issues. After a couple years the digestive stuff gradually resolved but I was never the same. Fatigue and an occasional migraine were the only early signs until I acquired another 10 day stint of stomach flu (?) and lost 10 pounds in 10 days. Whatever that bug was, it next moved into my leg muscles as I had intermittent spasms. It began to effect my sleep.
Still, I was able to partially recover. I went out to Colorado to chaperone a youth event and didn't sleep for 10 days. I came back nearly dead and slept on and off for about 3 weeks. Then I crashed.
The gastro stuff started with a vengeance. Cognitive very bad, mixing up words, in a lot of pain. I didn't know it then and not for a few years after, all the while dealing with pain and poor sleep, but I had lost my ability to digest gluten and am gluten intolerant to this day. The "IBS" diagnosis was really gluten sensitivity. Later I found baker's and brewer's yeasts to be a problem.
Symptoms accumulated, too many to list. The straw that broke the camel's back was when one day loud tinnitus suddenly began. That was 5 years ago and it has never stopped. Hearing loss came with it. The hearing gets worse when other symptoms are worse, it fluctuates. And I get periodic deep stabbing pain in the ears, which I presume is related to muscles or nerves.
Like you I have acquired intractable insomnia. I used to sleep like the dead before I got sick. Now I'm lucky to sleep at all. Without any meds, my sleep is light with frequent awakenings and I stop breathing and go through periods of jerking awake or gasping for breath. I am not overweight, and I do not snore. Everything I have read points toward a central problem where there is a delay in the brain telling the body to breathe.
This is long so I'll quit. The only advice I have is to take a known viral suppressant like a good Olive Leaf extract and keep doing what you need to for sleep. Eat a good diet and flush out any food sensitivities. Get some fresh air as often as possible and a little sun as tolerated. Last but not least, attend to your spiritual need. Forgive any offenses, seek forgiveness for any wrongs you have committed. Make peace with God if you have not already done so. These things have helped me the most.
I still wait and pray for the unravelling of this complex disorder and I pray for healing. The human body is so complex, science will never understand it all.
Hello I understand and feel ur pain. I have almost the exact same problem. I have one question and plz don't take the wrong way but was there ever any drug use mainly cocaine done?
I would highly reccomend that you do some research on Celiacs. I was pleased to see that Marrit had mentioned issues with food sensitivies. When I read your symptoms WITH the digestive issues that is what I initially thought of. You can be tested by blood test as long as you are not already on a gluten free diet, there is also a saliva test. I would talk to your doctor about this possibility right away. People with Celiacs are often mis-diagnosed for years.
Take care of yourself.
Take care of yourself.
You`re alive and you need continued support. It is challenging to navigate the medical system when you are ill. I know that well. Remember to seek out support because that is precisely what you need when you can`t figure it out. The support to keep going and being strong as you have been. Sometimes that is the difference between staying strong and giving up. You clearly have a lot of support here and hope you do equally in life.
You are clearly very strong; remember that.
You are clearly very strong; remember that.
Someone may have already mentioned this but it sounds a lot like Fibromyalgia to me.
Feeling spaced out - "Fibro Fog"
concentration, - Very common. in Fibromyalgia (FMS)
fatigue - Oh my goodness yes. I have to sit down and lay my head down on the kitchen table sometimes just to cook dinner.
stomach stuff - IBS is a very common thing in Fibromyalgia
nasal - I have suffered sinus problems for many years. Pretty chronic. Goes along with Multiple Chemical Sensitivities, also part of Fibro
dizzy - May have to do with sinusitis/ears
floaters - Yes
tinnitis - I have this - a very high pitched noise and I have had my hearing checked at an ENT and been tested for auditory tumor (negative on the tumor, thank goodness)
after images - Not so much personally but I have seen it on the Fibromyalgia forum here on Healing Well before.
jaw pain etc - TMJ is very common along with Fibromyalgia. I think because the TMJ is Temperomandibular Joint, and there's muscle there.
muscle twitching - I get this, worst for me at bedtime, it's like my body is turning itself off for the night. Sometimes there are odd sensations like that of hot liquid on my leg.
headaches - very common in Fibromyalgia.
Sleep apnea - I have this too. I had to argue with my doctor to be tested for it. She said I didn't fit the profile of someone who would have sleep apnea (ie I don't have a fat neck or whatever) but I held my ground and voila I do have sleep apnea. It is very common in Fibromyalgia.
See what your doctor says about this. I see a Rheumatologist. Also please join us on the Fibromyalgia forum, you'll be very welcome and you'll see your'e not alone. What has helped me a lot is to think of it as "WORKING THROUGH" Fibromyalgia instead of battling it. Like you, I was certain I had cancer or something they were missing. It is like the flu from hell that never goes away.
Feeling spaced out - "Fibro Fog"
concentration, - Very common. in Fibromyalgia (FMS)
fatigue - Oh my goodness yes. I have to sit down and lay my head down on the kitchen table sometimes just to cook dinner.
stomach stuff - IBS is a very common thing in Fibromyalgia
nasal - I have suffered sinus problems for many years. Pretty chronic. Goes along with Multiple Chemical Sensitivities, also part of Fibro
dizzy - May have to do with sinusitis/ears
floaters - Yes
tinnitis - I have this - a very high pitched noise and I have had my hearing checked at an ENT and been tested for auditory tumor (negative on the tumor, thank goodness)
after images - Not so much personally but I have seen it on the Fibromyalgia forum here on Healing Well before.
jaw pain etc - TMJ is very common along with Fibromyalgia. I think because the TMJ is Temperomandibular Joint, and there's muscle there.
muscle twitching - I get this, worst for me at bedtime, it's like my body is turning itself off for the night. Sometimes there are odd sensations like that of hot liquid on my leg.
headaches - very common in Fibromyalgia.
Sleep apnea - I have this too. I had to argue with my doctor to be tested for it. She said I didn't fit the profile of someone who would have sleep apnea (ie I don't have a fat neck or whatever) but I held my ground and voila I do have sleep apnea. It is very common in Fibromyalgia.
See what your doctor says about this. I see a Rheumatologist. Also please join us on the Fibromyalgia forum, you'll be very welcome and you'll see your'e not alone. What has helped me a lot is to think of it as "WORKING THROUGH" Fibromyalgia instead of battling it. Like you, I was certain I had cancer or something they were missing. It is like the flu from hell that never goes away.
Post Edited (applevenus) : 5/15/2012 10:18:05 AM (GMT-6)
PS Men DO get Fibromyalgia. I think men make up about 20-25% of FMS cases.
46F, Fibromyalgia, Vitamin D deficiency, Sleep Apnea/CPAP therapy, allergies/multiple chemical sensitivities, possible Chronic Fatigue & occasional IBS symptoms.
I take vitamins, Tramadol for pain, Flexeril as needed.
46F, Fibromyalgia, Vitamin D deficiency, Sleep Apnea/CPAP therapy, allergies/multiple chemical sensitivities, possible Chronic Fatigue & occasional IBS symptoms.
I take vitamins, Tramadol for pain, Flexeril as needed.
I have had many similar symptoms and tests. Ultimately, my issue was severe B12 and vitamin D deficiencies due to prolonged use of PPIs for GERD (acid blockers for acid reflux). I also went gluten free just to be safe. I am on B12 shots, sublingual methycobalamin (b12), liquid vitamin D, magnesium and off all prescription medications. I have lost 30 pounds, my joint pain is gone, fatigue is greatly reduced, bone pain gone, IBS that I had 15 out of 30 days for 3 months straight is GONE. My GERD is better OFF the PPI than it was ON the PPI. Read the book, "Could it Be B12?" which you can find on amazon. Then get tested for B12 and D before supplementation. And ask for the number- don't let them just say "It's normal." My B12 was 220. Normal in the US is 200-900 and the fact is, with B12 shots, my symptoms are almost completely gone (it takes time to build both these vitamins back up in your system.) Too many people are suffering needlessly for years because doctors don't pay attention to nutrition! I am also reading "Your Inside Tract" by Gerard Mullin I think it is- he is a GI doc who was misdiagnosed and almost died, and healed himself through nutrition. I feel better than I have felt in years and years and while I am pretty angry at how I just swallowed these PPIs because my doctor said to and now I find out that you can have reflux symptoms if you don't have enough stomach acid, or simply because of a LES (lower esophageal sphincter) issue - ugh. But I am taking back my health and I am doing so well. I hope you all get tested. Read the book. It's really eye opening.
Moon
Moon
I have the same symptoms. I've had a million dollar work-up and all tests negative. I was diagnosed with CFS a few weeks ago after being sick for a year.
Find out what your levels were. Don't just let a doc tell you they are "normal." My B12 was in the low end of normal and yet treating it took care of my symptoms.
RollsRoyce said...
P.S. I contracted Lyme 45 years ago but was only diagnosed two years ago. Told docs for 45 years that I had Lyme, but NOOOOOO! "No, you don't test positive," blah blah blah.
Finally found the doc who knows a thing or two!
Regina
P.S. I contracted Lyme 45 years ago but was only diagnosed two years ago. Told docs for 45 years that I had Lyme, but NOOOOOO! "No, you don't test positive," blah blah blah.
Finally found the doc who knows a thing or two!
Regina
Just curious, what did he know? What made him the special doctor that could detect it? Do you have any knowledge of how to be "correctly" tested?
Hello jr991,
I noticed this post whilst doing a google search and felt I had to register to tell you that more then likely you have an autoimmune disease known as celiac caused by a reaction to the component of wheat, barley, and rye. It sounds very much like Gluten ataxia.
Have you tried following a completely gluten free diet? Many of the symptoms that you list such as poor concentration, brain fog (heavy head), muscle spasms, excessive fatigue are symptoms of coaliac... I also had these symptoms that went away completely after following a completely gluten free diet.
See http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html
and
http://www.coeliac.org.uk/coeliac-disease/what-is-coeliac-disease
and here is a good support forum
http://www.celiac.com/gluten-free/forum/49-celiaccom-celiac-disease-gluten-free-diet-forum/
I noticed this post whilst doing a google search and felt I had to register to tell you that more then likely you have an autoimmune disease known as celiac caused by a reaction to the component of wheat, barley, and rye. It sounds very much like Gluten ataxia.
Have you tried following a completely gluten free diet? Many of the symptoms that you list such as poor concentration, brain fog (heavy head), muscle spasms, excessive fatigue are symptoms of coaliac... I also had these symptoms that went away completely after following a completely gluten free diet.
See http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html
and
http://www.coeliac.org.uk/coeliac-disease/what-is-coeliac-disease
and here is a good support forum
http://www.celiac.com/gluten-free/forum/49-celiaccom-celiac-disease-gluten-free-diet-forum/
Post Edited (Michelleanswer) : 6/16/2012 1:45:23 PM (GMT-6)
I Cannot believe what i am reading. I thought i was the only person who had these symptoms. Its incredible. I have thought over the years that it must be some kind of auto immune thing. My problems started after i had my son and i picked up an infection in the hospital and ended up with boils.
I have never ever been the same. Doctors simply dont listen to you. they dont care. It is so frustrating.
I am so bloody exhausted. I feel like i just need a rest. I keep hoping that i will start to feel normal again but it never happens. I feel like i am constantly on the verge of getting the flue. My throat hurts, my eyes are red and sore. My brain simply does not function. All i want to do is sleep.
I dont know how to fix this. All i want is to have some bloody energy. I feel as if i am dying, as if i have some horrible cancer or disease that is slowly sucking the life out of me. I feel as if i am dissappearing.
I wish there was an answer
I have never ever been the same. Doctors simply dont listen to you. they dont care. It is so frustrating.
I am so bloody exhausted. I feel like i just need a rest. I keep hoping that i will start to feel normal again but it never happens. I feel like i am constantly on the verge of getting the flue. My throat hurts, my eyes are red and sore. My brain simply does not function. All i want to do is sleep.
I dont know how to fix this. All i want is to have some bloody energy. I feel as if i am dying, as if i have some horrible cancer or disease that is slowly sucking the life out of me. I feel as if i am dissappearing.
I wish there was an answer
I just joined this after reading the post. First off, I apologize if I make no sense with my typing or writing,for I feel ,sickly, foggy and confused. I can't remember anything. I have a dx of Fibro and CFS, for about 13 years. I'm getting worse and worse. I can't shower or get the mail without a plan. I'm all alone living this secret. I have most of the symptoms as in the original post but I also have interstitial cystitis, so my bladder has bouts of ". I can't think anymore!!!! I'm crying alone in my apt and hate what I have become. I'm so chilled, then hot. I know I have a fever but don't have a thermometer. My pain management md treats my symptoms with meds and more meds, started by my MD I had prior to moving. I hate these pills. Strong pain meds, pills for energy, anxiety, sleep. He even wanted to give me a prescribed Rohypnol sleep med and I refused. I have refused many meds, I am on meds for a cancer pt and feel like I have Aids but I don't. I had many tests years ago when this first happened. Everything was negative, then they brought up the C word. Finally I had a titer for Epstein Barr and it was through the roof and that's how this dx started. My immune system is so weak. If I catch a cold , I can be stuck in bed for a month. I'M LOSING MY QUALITY OF LIFE and feeling hopeless!!!!I'm in my early 40's yet look much younger, for I never see the sun. I guess that's the only good thing I have, secondary to whatever this is???? I can't take care of myself!!!!! I can't do the laundry, I used to be into clothes, make-up and girly things and if offered 10 grand to go on a shopping spree but had to go now, I'd say no!!!!
People don't understand because when I go out in public I wear make-up and don't look as sick as I feel. Something is really wrong right now, I don't drink enough, or eat enough and take these stupid pills. I'm sure these meds add to these issues for they have side effects.
The one's that are physically addicting suck because I forget to take them and only reminded to by starting to have withdrawal symptoms.
I hate going to the pharmacy and MD 1x/month, I hate the stigmas. I am treated well by my pharmacy, I have gone there for 8 years. One pharmacy and one MD, so they know I don't doctor shop or do things people do that make it hard for people who really have pain, not to be judged.
Everyone has died like my husband and father, I have a mother who is a borderline and hates me, I gave her all my $ before and now like the giving tree, just a stump with nothing left to give her.
I have no siblings, didn't get to have kids for my husband died. I have 2 cats and treat them as my babies. It takes all I have to care for them!!! They come first because they are helpless. They sit outside the shower when I'm in it and one even jumps on the top to see if I'm ok. I make then depressed when I cry. I feel guilty. If it weren't for Pet-co online, I'd be worse off.
I have had this Lyme disease thing in my head lately because I was never tested before. I'm scared to know!!!
The pills w/o proper fluid, I'm sure are killing my organs. Yet my stool and urine are normal in color because I check, no pitting edema or signs of liver or kidney failure[so far].
I feel as if I'm 90. I hate myself for taking these meds but I have too and when feel better, I decrease. When stress is worse my upper spine feels like there is a fire in my back and I fantasize about cutting my spine out. I know it sounds disturbing but I need to be honest. It makes me feel good to imagine this red, inflamed fire being taken out of my back. The burning is so bad. It's only my upper back ? I lie on the floor and rub my back all over and on the wall too. I'm never comfortable!!! The tens unit helps, I pit it on full blast and wear it longer then the directions.
No one knows I take meds because I don't slur , have small pupils or act high. The meds win blocking the pain at the receptor site. People would be shocked if they knew what I took, take or what can be given. I truly hate myself because of this. I'd give anything to give all my meds away to one but they'd have to take my pain and all symptoms long with it. Right now I have weird pain in my butt area that goes lower into my thighs. I hurt everywhere. 
I feel like I want to call 911 because I'm sooo weak, I live on Ensure most of the time, I can't get to the market or can't hold real food down. I'm ashamed to ask for help. I have lost some friends because I never can keep plans. People take it personally and don't believe me , because they don't get how I can be sick so much!!!
I have learned I can't make any plans ever. I may feel good, which to me is what a normal person feels like with a average cold. Right now I am in outer space and feel retarded as I write.
What do I do, I AM SO SCARED and have 0 family!!! I need someone to wash my things. Thank-god, I have so many sleep clothes that I can wear. I can't perform my adl's and need assistance for my iadl's.
I've lost my desire to dress up and I loved too but have no energy. I used to use many skin products 2x/day and now have gone 2 days w/o washing my face. It's that bad , that I have no energy to even to that at times!!!
I feel so worthless and gross!!!!!
I'm scared I wrote this , I'm just scared!!!!!
This is the post that I can relate to the symptoms very well. I hope I put my post in the right place??? I'm so confused ??? How can I be so sick from Fibro and Chronic Fatigue?? It makes no sense, what more it to this??? I found this sight when I googled I feel like I'm dying/fibro/cfs... I hope to go from this to 
but at this point feel I'll will keep getting worse, with NO real answers. I guess it will take a famous movie star to have these dx's or symptoms before anything is really done to give us answers. I'm a recluse and hate that I can't go to a movie but 1-2x/yr on a whim, if I energy on those rare unexpected great days. I pray to have the strength to just do a load of laundry this weekend and I will be sooooo happy and grateful... I hate being a whiner, I know many have way more serious things then this. BTW, I read an article that people who took Cipro have many of these issues. I was on Cipro to prevent bladder infections on and off for about 15 years. Has anyone else heard about this??
to but at this point feel I'll will keep getting worse, with NO real answers. I guess it will take a famous movie star to have these dx's or symptoms before anything is really done to give us answers. I'm a recluse and hate that I can't go to a movie but 1-2x/yr on a whim, if I energy on those rare unexpected great days. I pray to have the strength to just do a load of laundry this weekend and I will be sooooo happy and grateful... I hate being a whiner, I know many have way more serious things then this. BTW, I read an article that people who took Cipro have many of these issues. I was on Cipro to prevent bladder infections on and off for about 15 years. Has anyone else heard about this??
I developped Fibromialgya, Chronic Fatigue Syndrome and Chemical Sensitivity due to malpractice with anesthesia. That was the diagnose of my neurologist and other doctors. I am struggling with tinnitus, paresthesias, terrible pain, pins and needles, crapmsp... Some time ago I was in bad without being able to move from my bed. Fortunatelly I met a doctor in Solana Beach, Dr Raymond Woo who has treated Fibromialgya and chronic Fatigue with success. I was able to walk again but unfortunatelly I don't live in California and I couldn't complete the treatment, but I hope I will be able to come back and finish it and recover my health. He treats with acupuncture and although at the beginning I didn't believe in this kind of treatment is the only one who has worked for me and for other patients with fibromialgya and Chronic Fatigue.
I wonder if any of you has developped fibromialgya, Chronic Fatigue or Chemical sensitivity after surgery. Could you please contact me? I
Thank you,
I wonder if any of you has developped fibromialgya, Chronic Fatigue or Chemical sensitivity after surgery. Could you please contact me? I
Thank you,
How do you guys get doctors to give you things like vit. B shots? What type of doctor will do this, especially if your B is above 200 but not much? I live in South Dakota and there isn't a single naturopath in the state I can find...
Wow, I have never felt so not alone and yet so sad to be in good company at the same time. I feel for all of you, South Dakota you will need to travel to find a good doc. naturopathy you can find alot on the net but be wary and check with someone you trust before you buy. Hope to type at you again soon 
Fibromyalgia, Chronic Fatigue Syndrome, Brain Tumor 2nd, crainiotomy 2002, radiation 2007, mild scoliosis, carpal tunnel, surgical menopause, 44yrs old and on disability since 2009.
Fibromyalgia, Chronic Fatigue Syndrome, Brain Tumor 2nd, crainiotomy 2002, radiation 2007, mild scoliosis, carpal tunnel, surgical menopause, 44yrs old and on disability since 2009.
hello,
have been reading the forum and am realizing that im not alone in suffering. I have been sick for several months. I came down with what i thought was a flu bug and was sick for about a week. after being sick for several days I went to the emergency room and they did a monospot test. It came back positive. I was told to get plenty of rest and follow up with my GP. I have never recovered from the illness. After 2 months of feeling ill my GP did a titer test to see if the virus was still active. It was. Since then i have been dealing with a number of symptoms that don't show any signs of going away.
sore lymph nodes in my neck and armpits
extreme exhaustion
brain fog
insomnia trouble falling asleep trouble staying alseep
malaise
sore throat that comes and goes
sore or achey joints
muscle aches
very bad headaches
feeling of lump or obstruction in my throat
This has been very hard for me and is affecting my professional and personal life.
I have been on supplements and have tried many home remedies to no avail.
Wish and hope for us all to get better.
have been reading the forum and am realizing that im not alone in suffering. I have been sick for several months. I came down with what i thought was a flu bug and was sick for about a week. after being sick for several days I went to the emergency room and they did a monospot test. It came back positive. I was told to get plenty of rest and follow up with my GP. I have never recovered from the illness. After 2 months of feeling ill my GP did a titer test to see if the virus was still active. It was. Since then i have been dealing with a number of symptoms that don't show any signs of going away.
sore lymph nodes in my neck and armpits
extreme exhaustion
brain fog
insomnia trouble falling asleep trouble staying alseep
malaise
sore throat that comes and goes
sore or achey joints
muscle aches
very bad headaches
feeling of lump or obstruction in my throat
This has been very hard for me and is affecting my professional and personal life.
I have been on supplements and have tried many home remedies to no avail.
Wish and hope for us all to get better.
Make sure your GP send you to an endocrinologist to get your thyroid tested. Apparently thyroid disease is pretty common with CFS. And go even if your thyroid test ok, the test your GP does isn't enough. Good Luck!
Fibromyalgia, Chronic Fatigue Syndrome, Brain Tumor 2nd, crainiotomy 2002, radiation 2007, mild scoliosis, carpal tunnel, surgical menopause, 44yrs old and on disability since 2009.
Fibromyalgia, Chronic Fatigue Syndrome, Brain Tumor 2nd, crainiotomy 2002, radiation 2007, mild scoliosis, carpal tunnel, surgical menopause, 44yrs old and on disability since 2009.
all of you are wrong I know whats going on. you dont have a disease dude.