Recently diagnosed September 2011. I have hid my F/M from just about everyone making myself a virtual prisoner in my home. Worst is the fatigue that reduces me to a disabled wreck,unable to get from sofa to kitchen without holding on to the walls for stability, rejecting the use of a disability scooter is my problem at the moment and holding on to the hope that this is just something that will go away... denial i think they call it.
BUT IS IT.... can it go away if I am strong enough?
get tested for babesia, Bartonella, and Lymes disease. The Western blot is useless if the bacteria is in the tissues, not the bloodstream. PLUS, the immune system is so overwhelmed, it dosent know what antibodies to make since the surface proteins are changing so often. Listen to my advice, I'm not a Dr but I have been through what you have and am getting better.
Also, get a HHV6 IFA test for antibodies and a CD57. HHV6 virus reactivates when you are immunosuppressed and causes MS like symptoms. A CD 57 test looks at your immune system. If it shows anything under 60, you have a good chance at having Lymes and coinfections of HGE, Babesia, Bartonella or all 4 at one time. These are INTRACELLULAR bacteria and WILL NOT show up on standard blood testing.
Do you retch/throw up occasionally? chronic headaches? eye pain? sore feet/ ankles? stabbing sensations? bowell issues? sleep issues? sometimes feel like you cannot get enough AIR?
Well, I believe anything is possible for the motivated and strong willed person that searches and seeks until they find. I have Crohn's and it's Chronic as well. I have spent countless hours researching my disease, searching for safe treatments that are available. I think that if you do the research, you will find some answers that may be a benefit to you. How are you able to hide your condition and what do you tell family members & friends. Don't be ashamed of yourself because you have this condition. It's not your fault you are sick. You may be supported by your family, but you'll never know if you don't try. & about the scooter. Why don't you get one that you can use when you are having a bad day? Getting a scooter will not label you as "disabled", it will improve your quality of life. You should not wait until you fall to get a scooter. Hang in there and do what you know you should to be safe and healthy.
I hid my condition in the short term by becoming a recluse and ignored all friends and family, made excuses not to see people.
Now I have given my daughter a leaflet about my condition and some of my family know, but I have a stubborn character and my family dont do "illness"
I am not ashamed I really dont know why I feel the need to be seen as the "perfect person" I am taking baby steps at the moment and joining this forum is the first step, my daughter signed me up and then made me go on and look through it with her... bless her. Thank you for replying I dont feel so alone now. PS I am not a quitter and by the sound of it neither are you
I have no idea what you just said, but I will look it up on the internet
except for throwing up I get all the other things and the things that worry me are the shortness of breath, the rib pain, the foggy head that makes me feel out of control, the irritability, the fatigue, dizziness, the inability to talk like I used to without forgetting things,the pain in my joints feet legs ribs knees arms wrists elbows and the very worst is waking every hour or so through the night. But on the plus side I have times when I feel "normal..ish"
So it's cyclical? Some days you kinda feel OK'ish, but others you feel crappy? The crappy days are when the cytokines are being released into your bloodstream. They are the waste products of the bacteria after they have gone into another cell. Go to Youtube and search for BABESIA, you will see people there talking about their illness and some videos of the bacteria in the red blood cells. Its like Malaria. It causes the red cells to baloon up and then they cant squeeze through the capillaries causing cold sensations in feet and hands and headaches. lack of oxygen. If you took a test to see how much blood volume you had in your body, it would prob show 30% less than what you should have for you size/weight. Bartonella causes sore ankles, hot/burning sensations, headaches worse than migraines.
Go to www IMMED org and look under autoimmune illnesses. They talk about infectious mycoplasmas which can be a coinfection as well. Search Columbia University /Lymes. They have an EXCELLENT site for very good info. Search for www ILADS org to find a DR near you that knows about these infections. 14 months of missdiagnosis for me until I talked to a Nobel prize nominee at IMMED and he said no standard doc will figure this out. He was right. Also research HHV6Foundation and look at all the problems being associated to it and a weakened immune system.
PM me if you need further info. Wishing/hoping this is gonna go away will not help.
If infact u have been diagnosed with F/M u will experience many issues. There is no "blood test" that diagnosis FM...its based on ur specific symptoms,& specific "pressure points" that a educated doctor in FM will perform. When I got diagnosed few yrs ago,my exact words were what is this? And when will it go away? Sorry to be the bearer of bad news but it can worsen(just not a sugar coater) I do however know u must continue ur regular activity,best u can. I have done that best I can,& yes there are some days better than others. I also have known ppl who just give up,& that's absolutely not the thing to do,even though u may feel like it. My experience of having FM has not been so glamourous. I continue each day to just learn I can do same things I have always done,I've learned for me it just works better to pace myself. Defiantly find a doctor that is not a skeptic of FM,many out there that think its "all in ur head" not so!! The other thing I can tell u is having a good supportive family of what u & they are dealing with is VERY IMPORTANT,in how u feel. Stay away from Stress if u can,that's a big trigger for FM. If I can help I'm hear,best of luck for u & ur family.
Jen, why haven't you considered testing for babesia, Bartonella, HGE and CD57 as well as HHV6? Fibro is a spurrious diag. Dr Garth Nicolson said 99.9 % of Fibro diags are misstaken and are actually Mycoplasmas (chronic intracellular bacterial infections w/ now unsuppressed viral infections.
I AM getting better by treating the bacterial side, boosting my immune system, and getting to suppress my HHV6 and using antifungals. Ibet if you got tested properly, you would actually get better. Since pain meds mask the INFECTION, they don't cure you, just prolong your misery. Just my .02
I appreciate your intensive knowledge of these variously different test ur speaking of,however I have done some research myself,and discovered in part I agree with what ur saying. FM is infact brought on as a result of some type of bacterial infection,& also been known to have set up "house" within ur body,& harbored from what could be classified as PTSD,which generally is often a very common trigger of FM. I'm just sharing as so you are to different medical reason for this sometimes debilitating disease,which can be perfectly managed by getting a doctor who is knowledgeable in treating.
I'm not saying that I disagree with which your speaking of,because i can't I'm not even sure of what the specifics are of what you mentioned?? I can only speak on my particular FM experience. I do know prior to finding my physician,I saw a few that poked & proded on me trying to fit my symptoms to a Dx.with no results. I just know that FM comes with many other problems,such as IBS,sleep problems,light sensitive,depression,not to mention the relentless paim,& many other disturbing issues. I said before,each person is different,what may help some,not always helpful to others. Not here to take away ur or anyone else's individual experience,nice to me to know different opinions & other options to consider exploring,so I say with complete respect & gratitude in ur opinions & own experiences,I am very passionate about things in general,but very much open to all knowledge I or anyone else can gain. Also to keep in mind,there's a lot that are right now w/o medical insurance,myself one of the many,not by choice of course...but by insanely high rates..& prior to new year my spouse was very successful business owner of 30+ yrs,which unfortunately has changed a lot of whether I see my doctor 1x month or quarterly. I come in peach,so that my particular treatment of FM is the best I can for now.
Thanks all so much for ur advice,don't stop,we all need to learn & the only stupid question,is not asking it......
Peace & generosity,
Thnx for the reply. Jen. Go to IMMED and look at Autoimmune illnesses. This man is a Nobel prize nominee, 3 World Renown citation papers, 600 peer reviewed and accepted papers. He is a cellular pathologist who used to be in charge of the MD Anderson Cancer Research Facility. HUGE list of accolades and experience. He discovered infectious Mycoplasmas are causing the Immune system to go "over the edge" coupled w/ reactivated viruses and fungal issues. Seems when the immune system is damaged by a bacteria that is chronic (intracellular), it creates a dysfunction where killer cells attack the immune system and CNS. They also kill the cells that "clean up" infections and fungal infections. You can kill the bacteria using long term Macrolides (Azithromycin, Minocin,Omnicef, etc), boost your immune system by taking proper supplements and inflamation reducing drugs ( Gabapentin, Neurontin), that helps reduce stress to the Immune system. Eating healthy is always a plus.
Some use antivirals to help, but they can be caustic and actually be counterproductive. This is cutting edge stuff that the ILADS doctors have been using to treat Lymes and other bacteria induced infections/chronic illnesses. If you get the chance , check out IMMED and the HHV6Foundation.
This is a comment by Nikodicreta on another page of my response to someone like you who is searching for answers
"Welcome to the forum.
The fellow members that commented are right.
With all those symptoms it is almost definite that you have an underlying
infectious condition such as Borreliosis ( Lyme Disease)and possibly with a Pathogenic Mycoplasma co-infection.
These infectious pathogens are almost invisible, hiding in your body, often
disguised as normal cells by using cellular membrane. So detection becomes next to impossible, as they evade your immune system and most doctors tests.
The key is to get verification of their presence by going only to expert doctors in this field. You need to find a LLMD with experience also with pathogenic mycoplasmas. And the tests must be handled by a reputable reference Lab such as IgeneX. Any ordinary labs will return far too many false negative results.
Should you test positive for Lyme, most respond positive to antibiotic treatments, however, it may take time to find the right ones, as each patient responds a little different.
As far as the pathogenic mycoplasmas go, they are the nastier of the bunch as antibiotics can only inhibit their growth, but not able to destroy them. That can be accomplished only by a strong immune system, while they remain static, through the antibiotic action.
You need to do this fast as it is still in the early stages of the infection.
You may want to research this further on your own.
Checkout ILADS, LLMD, IMMED, IGENEX websites for more info. ."
Hope you find the root of your illness and get better.
thank you for replying jenfibro
would be vey grateful if you felt able to share some of your symptoms with me and the effects it has on your life, Do you have rib pain at night, I have got quite distressed by it and have not got any relief from the tablets that I have been given. Amatriptyline 10mg, also my fatigue levels do you suffer similar problems please feel free to tell me about them. I live in worcestershire area do you have a group you attend.
Intersesting reply... thanks I have read your reply again because in a Foggy Stage it did not compute at all..... now slightly back in intelligent land again, I am researching about everything you have lold me about.
The concerns I ahve would be would my doctor given the confines of his budget be willing to do a lot of tests on me, when he is confortable in his diagnosis of F/M. However not willing to sit back on my ever widening backside and do nothing am willing to try anything. Will post my progress as I go. Good luck everybody.
You most certainly are NOT alone, so please never feel that way. And you absolutely have NOTHING to be ashamed of. I, too, have fibro (along with several other health issues, including other chronic pain issues) - so I do definitely understand how you're feeling.
The pain and fatigue from fibro can be so overwhelming - especially when you seemingly go from a very outgoing, energetic person to someone who has difficulty walking across teh room without getting extremely fatigued and someone who has the aches and pains of a 90 year old almost overnight.
You said you gave your daughter a pamphlet about fibro. That's great! Definitely try and educate yourself and your family as much as you can. One book that I purchased right after my diagnosis is called "Fibromyalgia for Dummies" - I found it to be very helpful, not only for myself, but also for my loved ones. The thing I really like about it is that, while they do explain what is happening medically in your body with fibro, the book is written is layman's terms and language, so it's not filled with only a bunch of medical mumbo jumbo that nobody without a medical degree can understand. It really helped both me and my loved ones to understand that I truly am not alone in this and that what I was (and continue to) feeling is absolutely normal with fibro - the pain, the fatigue, the "fibro fog", etc.
One particular part of the book that jumped out at me and has stuck with me (I was diagnosed about 15 years ago) is a passage that explained how a fibro patient feels. It said if you think about how you feel when you've got the absolute WORST flu that you've ever had - the pain and fatigue - and multiply that by AT LEAST 10 and that's how a fibro patient feels 24/7, 365 days a year. HIT THE NAIL ON THE HEAD EXACTLY FOR ME!!
Absolutely DO NOT feel ahsamed or like you have "given up" by getting a disability scooter. I was like you a couple of years ago - while I had severe difficulty getting around and would basically hibernate in my home because of that difficulty, I was sooo against getting a wheelchair or scooter to help me. I felt like if I did, I was giving in or "making" myself disabled. However, I also knew how much those power scooter carts that the grocery stores have helped me when I went to the store - without one I was not able to make it even 1/2 way through the store. So when my doctor suggested that I get a power wheelchair to help me get around better and more, I was against the idea at first. But the more I thought about it, I realized that it would only help me to be able to be safe in my own home and to also be able to get out more and be social again. And it most definitely has!! I got my power chair about 16 months ago and I can hardly believe how much better it has made things for me. I don't use it ALL the time when I'm inside - I do still walk around inside when I feel "safe" to do it and so that I can retain strength in my legs, etc. - however, it is so reassuring and nice knowing that it is there when I need it. I don't have to be so worried about falling as I used to be (I had had a few falls before I got my chair and it terrified me that it would happen again).
As Amy also said above, it has definitely improved my quality of life. Just because you get a scooter or wheelchair, it doesn't mean you have to 100% depend on it (unless, of course, your doctor says to use it ALL the time), but having it available for those times when you need it can make all the difference.
Fibro will not "go away", however, you probably will have times that you feel "mostly normal" - when the pain and fatigue won't be as severe. And then you'll have time when your symptoms are absolutely horrible. Unfortunately, that's just th enature of the "beast" of fibro. Sleep is VERY important to everyone, but especially to those of us with fibro and as you already know, sleep is quite often very difficult for us. It's a vicious cycle - we can't sleep because we are in pain and don't feel well and our pain and fatigue are worse because we aren't sleeping. Many fibro patients find they need some sort of sleep aid to help them in this area. So if you are having difficulty with sleep, don't hesitate to ask your doctor about getting something to help. And if the first one doesn't work, ask again for something else - quite often it's a lot of trial and error to find out what works for YOU. Fibro is not 100% the same in everyone and not everyone responds/reacts to medications the same way, so what works for one person may very well not work for another, even if their symptoms are exactly the same.
TRY to stay as active as you can (I know, VERY difficult) - some exercise is good for fibro pain and fatigue, HOWEVER, GENTLE exercise is the key. Gentle stretching, water exercises, walking (not miles and miles) are good - heavy aerobic classes, running marathons, etc. - probably are not teh best. And don't be overly concerned if you feel worse a day or so after you exercise - with me, anyway, I usually do not "feel it" the same day I've done something, but rather the next day or even the one after that and I'm thinking to myself "what in the world did I do today to cause THIS?" And then I realize that it wasn't what I did TODAY, but rather what I might have done 2-3 days ago!! It's very strange!! Definitely take things slowly, though - if you find that your symptoms are increasing dramatically with the exercise, slow down on it or switch to something else. And most definitely start out just every other day or every couple of days.
Eat as healthy as you can - some fibro patients can correlate certain foods or drinks to their symptoms getting worse or better - things such as MSG, caffeine, chocolate, preservatives, gluten, dairy, etc., can cause some people's fibro symptoms to increase. Some people also find a correlation between artificial sweeteners and their symptoms. With me, there's only a couple of things that I can sometimes correlate wiht an increase in my syptoms. MSG definitely gives me a problem, so I try to avoid it whenever possible - IF I go out for Chinese food (MSG is often used in chinese cooking), I request my meal to be made without it and I also read labels at the grocery store to see if it's in things I'm buying. I personally do not have any problems with artificial sweeteners - I've "tested" myself wiht that one because I do like to drink Diet soda, so I completely eliminated it from my diet for about 4 months and noticed absolutely no difference, and also didn't notice any difference when I added it back in. I do sometimes have trouble with caffeine if I've had too much - one or two cups of coffee in the morning is usually ok, but if then I also have tea or soda later in the day that has caffeine, I usually will end up having more problems. So my diet soda that I drink is caffeine free, so taht I can still enjoy my morning coffee without having to worry about what else I'll be drinking throughout the day. I do find that too much dairy or chocolate also bother me, but as a child I had a milk allergy, so my "sensitivity" to that could be more related to that allergy than the actual fibro. But when I consume too much dairy or chocolate, my headaches, fatigue and bowel problems will increase. Oh, by the way, IBS (irritable bowel syndrome) is quite common with fibro, so if you're experiencing that, it's "normal" - can be mostly diarrhea, or mostly constipation, or a combination of both. Mine is the combination kind - one day I can be on the toilet constantly with the diarrhea and then a few days later I'm very constipated.
The main thing is to remember you are NOT alone - I'm avaialble any time you want to talk, vent, yell, ask questions, etc. Feel free to send me private messages here on medhelp (or on a post) any time you want/need. It's always nice to have friends who really "get" how you're feeling.
Gemini, since the symptoms of Fibro and Lymes are exactly alike AND Fibro has no explanation for it happening AND Lymes is caused by a bacteria that is KNOWN, would it not be conceivable you have been missdiagnosed since the proper tests were not done on you? That "worst flu you ever had" is a bacterial sign and reactivation of latent viruses, ie: Cytomegalo virus, EBV, or HHV6 and HSV1 or HSV 2. Why would anyone get stuck on a diag when the most up to date information is available. I certainly wouldn't. Fibro sufferers get pain meds, I get ABX. Im killing the bacteria, the other diag does not and only offers pain meds and more than likely you will progressively show signs of Parkinsons, MS, Lupus, Alzheimers, Dementia. This bacteria is just like Syphillis. ALL your symptoms are like a progressive Syphillis infection, even though it is not. The bacterias are BOTH Borrelia, they go EVERYWHERE blood flows. Do yourself a favor and reconsider your diag. It took me talking to a Nobel Prize nominee who is on the cutting edge of Infectious bacteria causing chronic illness to get proper diag and treatment. If you dissmiss me, fine. If you decide to listen, and research, you might get better. I only wish you and all sufferers of this out of control multisystemic illness peace and health
Thank you for your concern, but I assure you, I HAVE had all the testing several times and do not have any of the infections you mention. My lymes test the first time was just the ink blot kind, however, I requested it to be redone and go through the IGENEX - it still came back negative, as well as all the other testing.
I even did do a couple of extended periods of antibiotics (different ones) because I wasn't totally convinced at first that I was not, in fact, fighting some sort of infection and none of my symptoms improved or changed at all.
While I agree it's quite possible that some people ARE misdiagnosed when they actually do have an infection of some sort going on, I feel quite sure that I have covered all bases to assure that this is not the case for me.
Again, thank you very much for your concern and information - it actually was one of your (or Niko's) past posts that prompted me to request my lyme''s test to be redone with IGENEX.
I was diagnosed with Fibromyalgia over 12 years ago. I had every Lyme and tick test there was through local labs and all were negative. I went to 2 Rheumatologists, 2 FM specialists who are speakers for The Fibromyalgia
Association and professors at a highly accredited Univ., 2 General Practicioners and a Neurologist. All concurred that I have Fibromyalgia.
After years of suffering and a test, early on for EBV testing positive we chalked my FM up to that. Then came the test for Mycoplasma a friend on here suggested...results Positive. Every September I would get the tick born disease blood tests and every year they were negative.
Long story short, I got worse after a series of stressful events and my doctor sent me to a dr. who was real good at test specifically for "occult pathogens".
The result, Lyme disease, Babesia, Mycoplasma, EBV.
I am a poster child for all the symptoms Ewford and you all talk about on here.
I have years of headaches! Burning!!! Skin, eyes, brain, lungs. Tremors. Losing balance. Breathing issues. Sudden sharp pain. Rib Pain!! Thumb and knuckle pain. In the early stages...IBS, female issues, Extreme fatigue! Brain fog. Memory loss, short and long term, eventually. (note: memory returned after antibiotic treatment)
Two labs do the specific tests that I were given. Dr. Garth Nicholson uses and so does my doctor, Igenix in Palo Alto, Cali. And there is also MDL in N.J.
If you write Dr. Nicholson located at the address Ewford gave, he will write back with a plethora of info to help. The site itself is very helpful. Check out the links on Dr. Nicholson's talks.
Thank you for the response. My IGENEX WB Lymes was also negative BUT my Babesia and Bartonella were positive through IGENEX. Since those are concurrent infections, and the possibility that the bacteria is in soft tissue and not in the bloodstream and the possiblility that there are over 300 Borrelia strains that there are no tests for, my doc decided it was prudent to treat as opposed to not.
I have been put on Neurontin and Gabapentin for nerve pain issues, Omnicef, Minocyn, Azithromycin with Flagyl on every 3rd week. 2 weeks on, 1 week off abx. Plus all the other nutracells. My CD57 was 60 which is low and shows immunosuppression. Also my HHV6 test was high showing reactivation. Also there were other indicators that showed irregularities. if you get a blood volume test and it shows 30% lower than normal, It could be Lymes, IF your other doctor did not do that test.
I took time to read all the various comments here.
There seems to be a lot of interest to help and support or to seek help and support, a lot of useful contributions and a lot of confusion also regarding these conditions.
Specifically testing and diagnosis. Very justifiable confusion.
Some information to help some members understand what they are up against, and why we must all become more focused, knowledgeable, proactive and stronger (as in Mind and Spirit.)
Lyme Disease along with all the other Pathogenic Infections, including Pathogenic Mycoplasma infections and the numerous diseases initiated by those infections (Arthritis, CFS,MS,FMS,Parkinsons,ADD etc.) are probably the most under or un-diagnosed diseases in the western world.
IDSA (Infectious Disease Society of America) is THE dominant force in diagnosis and treatment of Infectious disease policy and protocol,
influencing CDC and most health authorities and medical doctors.
Their view of Lyme and Pathogenic infections is pathetically narrow and controversial.
From their own website: "IDSA sent a letter to the House Energy and Commerce Committee opposing the Lyme and Tick-Borne Disease Prevention, Education, and Research Act".
For entertainment purposes, go to their website and watch the short video.
It is a tragicomedy. Do they actually believe it themselves?
Their denial that Pathogenic Infections and Lyme disease
are chronic conditions is welcomed by Insurance, Employers (like the U.S
Goverment) Pharmaceuticals and other parties who otherwise would stand to lose millions in claims or lost profits.
Many IDSA so-called experts have testified against medical doctors
who have treated such infections outside the IDSA rigid protocols.
Do not be surprised if your Doctor downplays the possibility of Lyme or other Pathogenic Infections ( avoiding being black-listed or harassed) , or if you keep getting negative results from all the various tests, consistently.
( A few Labs were suddenly closed after positive findings of Incognitus Fermentans Mycoplasmas-
I'm planning a meeting in the future with Professor Donald Scott - I live just a couple hours away-as he has in his possession relevant official US and Canadian government documentation regarding extremely controversial events and actions in connection with these Infectious conditions.)
I strongly suspect that the interests of health authorities, CDC, FDA,do not coincide with the interests of the people suffering from these conditions.
( Search for " Public Law 107–116-" when FDA and CDC were ordered to comply with better testing and diagnostic procedures for Lyme . It was a step in the right direction , however, NOT MUCH has changed 9 years later-my opinion only- as these agencies are largely self-regulated)
Should one of their high ranking directors get something like Lyme disease,I wonder how they would approach it. LOL
Another time I will explore inefficiencies, limitations and faults of tests and labs.
Please post your comments. Do not keep them for yourselves.
Even if you do not agree or have some skepticism with something.
At the end, who knows, truth might prevail.
Blessings to All.
Niko, I have proof that what you are saying is correct about Pathogenic Mycoplasmas and denial. I had a friend at Anniston Depot in Alabama who was initially in Psy-Ops then went to Munitions. He was in charge of receiving all captured Iraqui weapons (conventional and biological). He said they ran out of room trying to store the Bio stuff and the military dumped it in the waterways around the US. Alabama, The Tri-Cities area, Oregon and when Hurricane Katrina hit some bio labs got washed out to the Gulf of Mexico. He had to go down there and wade in the backwash to recover the biocontainers so it would not be discovered. He was given EDTA by the pound. He said they were eating it like candy. He and his wife tried to conceive. spent 17K on in vitro. They found 28 marble cysts in her Uterus. He has all the symptoms of Lyme/Mycoplasmas, Bartonella, and has been suffering symptoms for quite aawhile. I have a ton more stories like that. Here is another. Iraq war 91. Airforce soldier gets wounded in Scud missle attack. He comes home very ill. Within 6 months, his wife gets ill, Lyme symptoms, Hysterectomy. All 3 sons become ill w/ same symptoms. Youngest son, cancer on his pancreas, goes into diabetic coma, loses eyesight in one eye. Fast forward to now, all 3 sons wives have had poly cystic ovarian cancers/benign cysts. And lyme symptoms.
THIS STUFF IS NO JOKE AND IT IS COMMUNICABLE. And we manufactured the bioagents and shipped them to Iraq. No wonder it's being denied. If it was discovered that WE are the cause of our demise, then the endresult would be inconceiveable.
wow.. thanks for feedback. 1st thing to say is only just finding out how to use "forum" not sure if I am missing replys from people and not sure how to find my way around site, but trust me I will get there eventually.
Interestingly your reply lets me know I am not alone, I still think are the doctors mistaken in my illness/condition but everyday I relive this Grounhog Day. I have learnt to already to allow my body to dictate what I do but my mind screams out to paracute out of an aeroplane, after all nothing will change the outcome I still wake up the next day in the same situation.
A normal day for me is to wake after 8 hours or so of fighting with my bedclothes moving my feet and legs to minimise pain ... never works, trying a pillow between my legs to stop pain in my hips and knees... never works, waking and reading a magazine or book whilst kneeling on floor beside bed in a prayer position.. ...dont ask!
Getting up putting on knickers are interesting catching my toe in my knicker leg 3 or 4 times before I give up and go without, commando's have nothing on me. Forcing my legs to work and get me down stairs ready for the exciting round of pills one to protect my tummy against all the other pills one to make me go, one to soften it when I go, one to bring down my blood pressure, one for inflamation, 4 for pain and one which I have no idea what it does. Drink coffee which I am told I cant have already given up my life,so they can go swing before I give that up ( have stopped the last one befire bed and exchanged it for old ladies drink of Ovaltine, apparently a whiskey to make it taste better is frowned upon.....I digress after pills If my husband is at work I get on my trusty (rusty) steed (my disabled scooter) and do the rounds with the over 60' s ladies who have taken me under there wing, this is where we walk..... thats a joke! our dogs, and talk about there varicous veins and the topic of the day....EVERYDAY Dog owners that do not pick up there dogs pooh. Back home I am now exhausted and sit and fall asleep on sofa sitting up, sometime during the day I try and keep the house in good order but this is conditional on how bad my day is.
I have been known to sleep for 16 hours a day sometimes and no I am not lazy, I hate doing nothing it just happens and I feel so ill that my body demands that I lay and sleep. Bathing is intersting I cant get out on my own I need my husband to be there, washing my feet never happens, my husband does it foe me including cutting my toe nails and blow drying my hair cause I find it difficult to hold hairdryer in position for long enough..... my husband tries, but the result is a hairstyle that resembles a birds nest
as he tries in vain to do it as I like it, and when he has finished I tell him it looks fantastic and that he should be a hairdresser, to which he grins with pride and as soon as he has gone I wet it and brush it out staight...... dont you have to luv em.... well thats a look into my life the good bit, the bad bits are the part where I become a complete Phyco when my mind fog is so bad that any noise around me can drive me insane, my husband talking on the telephone and then the door bell goes, the agitation I can go into is something that should and could put me in the mental asylum, still trying to control that!.... I used to manage a business and prided myself on being in control and able to organise everything and everyone around me,.... gone for now.
Hope you feel some of these things ring a bell with Fibro sufferers.
KEEP IN TOUCH.....not all the bad things but all the positive things and the funny things that you get out of life.
In my opinion, there are people that deny their illness and chalk it to other more conventional "diagnosis". The above is proof.
I met a woman who had been diaged with MS initally, then diaged with Parkinsons and now she is wheelchair bound. I "enlightened her" and she was tested for Lyme and coinfections along with a Mtcoplasmal panel. Yep, Mycoplasma Fermentans, Lyme (Borrelia Burgdeferi) and Bartonella/Babesia.
Not through Labcorp or Quest, but by highly specialized labs.
Kisskiss, I hope you get well but convential doctors will only let you get worse while giving you multiple diagnosis. I wish you the best. Oh, if you have had a hysterectomy or poly cystic ovarian cancer/benign cysts, my money is on the info you have been given by Nikodicreta, Phartist and me.
Seems like you are all higher up in the Knowledge Chain, I need to take baby steps, treat me like an idiot what do I ask the doctors to test me for 1st?
I have numbness in my hand that is a constant, breathing problems are a constant, Pain is a constant, fatigue is a constant, my legs do not want to work and I shake in my legs with the effort of moving them sometimes. I do have a worrying problem that I have never mentioned to my doctor and that is because I feel worried about saying something else is wrong.... I have a weakness in my arm usually left arm that is akin to pain that goes all the way down my arm to the wrist it usually goes away after 5 or 10 mins it feels like a muscle thing. What is that?
The nature of these infectious diseases is to spread to any Weak or out of balance system or organ of the body.
The Blood Brain Barrier is a strong protective filter of sort t hat keeps Toxins,Pathogens and other offensive agents from crossing over and getting into to Brain region.
Once these invasive organisms exploit any potential weakness in the BBB, they gradually infiltrate the brain, cause Lethargy, Brain Fog, Confusion and other Cognitive impairments.
The Brain's and BBB's defense is often a Lock-down. That means that any attempted treatment may not prove successful because of this.
I purposely expanded on this, to illustrate the fact that the challenge that you are facing is multi-faceted.
3.Medical Authorities and the Medical system are NOT on your side!
4.Medical Doctors are NOT knowledgeable or NOT willing to go against "accepted" or "recommended" policies and protocols, at the expense and suffering of the patients. The ones that can and will help you are just a handful.
5. You may not be able to rise above all this on your own and shift through this maze successfully, as I explained in the beginning.
My suggestion to you is to find a very experienced Naturopathic Doctor,
to act as your Health Coach.
Print off some of the posts here, as most of the advice is right on!
Take them with you when you go for a consultation.
It is the result of collective experiences of people just like you, who managed to find some real answers.
Please ask any questions anytime. Do not hesitate.
We are all here to help you get your life back.
God Bless you.
I don't know about all those bacterial diseases that are being talked about.
I was diagnosed with fibromyalgia years ago. I felt like a cripple having so much pain just trying to get dressed in the morning. Now it barely registers on my pain and disability list. Taking a small dose of Trazadone helped me some. Over the years, I kept increasing it which cured most of my symptoms.
There is a new fibromyalgia med called Savella which I read praise after praise on another website.
Also anti-depressants can serve as pain killers. I have severe migraines, which my headache specialist said to raise my current anti-depressant Effexor even more to treat the migraines. Due to one side effect from the Effexor, I said no. He then suggested Savella which I am going to switch to.
Lyrica is another med for fibromyagia, but some have problems with it like I did.
There are good treatments available for fibromyalgia.
So get another medication if the amitryptaline isn't helping you which is an anti-depressant. Or it may not be big enough a dose for you.
The lead researcher of fibromyalgia, Daniel Clauw, MD says that it appears that a variety of stressors can cause it. "...these include infections, physical trauma, immune stimulation and emotional distress." and "Once a person has FMS, exposure to these same stressors can exacerbate symptoms." FMS is fibromyalgia syndrome.
Sara, I answered your question on another post. I do not take ANY PAIN meds, are masking medications. I takes antibiotics and Gabapentin& Neurontin for reducing the inflamation. My headaches and muscle pain are gone..so are the days I could barely function, get dressed, think straight, eye pain, fasticulations, muscle and joint pain. Dr Clauw might be the lead Fibro researcher, and he is right. Various stressors ie INFECTIONS, Immune stimulation, etc. BUT Dr Garth Nicolson is THE expert on the bacterias that cause this. Nobel Nominee in Cellular Pathology.
The Mycoplasmas CAUSE the chronic intracellular infections and it gets worse as the bacteria leaves the cell, cloaked in a surface protein from the host cell, it promotes an immune response that is chronic if you dont systematically eliminate the bacteria that causes this and get your immune systerm in balance.
No, the treatment takes months or longer. Since these bacterias reside in cells, you must catch them as they exit the cell and go to the next. Kinda like catching a thief as he steps out the door. the ABX cannot penetrate the cell that it is inhabiting, nor can the ABX bust the cell wall, as in the more simple bacteria.
I wonder why you had a reaction to the Neurontin. Was it disclosed why?
Hey Sara12345 and ewford.
FYI, as I had done some research in the past regarding structural analogues of GABA, Neurotrin is a actually a synthetic form of GABA, with a variety of mainly infrequent side effects.
1.Neurotrin is another structural analog of GABA (synthetic form). This is usually the basis of most adverse reactions as synthetic compositions, are frequently not metabolized or processed effectively in comparison to the
natural forms. The absence of synergistic micro-elements is suspect.
2. GABA (Gamma Aminobutyric Acid) is a natural amino-acid and neurotransmitter that inhibits muscle activity and stress, synthesized in the body by utilizing glutamate and succinate.
3. Low GABA levels are attributed to:
*glutamine (glutamate) and succinate (the precursors of GABA)
* low levelsB1 and B6
* low minerals zinc, manganese and iron
* chronic stress and pain
* alcohol withdrawal
* inadequate sleep
* low levels of progesterone
* mercury and lead exposure
4. GABA supplementation is associated with extremely few side effects.
5. Uptake of supplemental GABA is limited because of the Blood-Brain-Barrier , so larger dosage is recommended by scientists.
Nanoparticle, Liposomal , Implantations and other delivery methods are being studied at present.
My suggestion is to get tested for GABA (urine or saliva test) and take it from there.
Have a good look at the main causes of Low GABA (I suspect that absorption of the GABA precursers is inhibited in many cases).
Look into the best food sources for GABA for you ( I take organic almonds and lentils) and supplemental best quality GABA, should your levels be very low.
As far as ABX, as much as they have "evolved"pharmaceutically- in more niche bacterial targeting manner- their action is still very limited.
Bacteria are evolving much more efficiently, mutating, using cellular DNA,
often multiple organism DNA, becoming much"smarter" than the drugs designed to destroy them. In the case of Pathogenic Mycoplasmas, as they are not bacteriums, the antibiotic activity is only bacteriostatic- inhibits their growth. While static, only a strong immune has the opportunity to detect and destroy these pathogens.
I cannot stress enough the need to strengthen the immune system.
Sure there are drugs that will offer relief, however, in the long run, the contribute greatly to the perpetuation and worsening of the conditions that they are prescribed for.
Check out on your own the JNK gene, to understand how drugs-among other factors- activate this gene. When this gene is activated long term- serious CHRONIC illness is guaranteed! This is a very serious health consequence that NO Doctor seems to want to talk about.
Don't take my word for it. Do your own research. This specific knowledge has made a huge difference in my life, as I have kept the JNK gene dormant.
Should you need more info on this, let me know.
WOW!!! Its been years since I stopped researching FMS and the breakthroughs just reading all these posts are ASTONISHING!!!
My issues started with being born Jaundice, reflux issues as a baby, Chronic headaches at 10yrs old, Osgoodschlatter. By the time I reached 15 I was diagnosed with IBS, and Migraines, By the time I was 18 it was FMS, CFS, Chronic pain, thoracic outlet syndrome, RLS, Mild scoliosis, TMJ, Chronic yeast infections, and after I had my daughter at 24 I was diagnosed with Aura Migraines, and by the time I was 31 I was diagnosed with Stage IV endometriosis effecting the bowels, bladder, ureters and everywhere else. I was also diagnosed with Hypoglycemia, Complicated Migraines, osteoarthritis is my jaw with two displaced disks again, PID, Chronic sinusitis and just recently diagnosed with Severe Anxiety disorder.
The one thing I can say for sure is that through all of this I have always had the nerve issues, I have always had sensitive skin patches either on my head, stomach, back, legs, face etc. I used to get the tremors alot but not anymore, I get the electric shock feeling sometimes still, with numbness and tingling of parts of my body. Now I feel the nerves in the back of my elbows seem inflammed or something and they hurt all the time. I also feel like I have restless BODY syndrome not just the legs. I am so sensitive to touch, sound, and smell that I feel like a loonie bin.
I am sure I have peripheral neuropathy, low B-12 and who knows what else.
I am tired of all of it. I am tired of the fight, I am tired of the obsessive research I have done over 17yrs and I dont feel like I can take anymore of this. I need these tests done, I need to feel better it isnt an option not to get better. I need to or I think I will go crazy soon if I dont.
Who would i go to, to get this tests done?
Thanks again for everyone who has done the this research as I really was starting to give up. I have given so much advice and helped so many people on these boards over the last 5yrs that for once i feel like I am getting back so much more than I gave. I should really just become a doctor for crying out loud lol
Ticked, please don't take this the wrong way. Has your mom or dad been diagnosed with the same type of symptoms, give or take? Research has shown that the bacteria can pass the placental barrier. You stated you have had medical issues since you were born. Wondering if this might be the case. Please give info if you want.
I wouldnt take that the wrong way at all. No my parents even if they do have issues would never go to the doctors. My mother however has ulcerative colitis in a bad way. She has been taking that leaf source stuff and said it has gotten better.
I 100% believe what ever it is I have was passed through when I was in her womb. At one point they told her she had to make the choice to abort me because they thought that she was having a tubular (SP?) pregnancy. Not sure what the story was around that.
My mom's side has various issues, my aunt they think has cerebral palsy but has never been properly diagnosed until later in her life. She has some serious physical issues. she has bones coming through her cleft in her mouth and I mean coming through. She can barely walk. My mothers other sister had Stage IV endo like I do and the same with my cousin on my mothers side as well. My mothers sister has a child that was born at 1/2 pound at 21 weeks, the one with endo started to grow breasts at 6 and spincter started to close up, the other sister has bone density issues where she can hit or fall from a short distance and break her arms, the other cousin has crohns and some rare blood disorder.
Dads side, there are diabetes (self inflicted) fibroids, arthritis and cardiovascular issues.
My older sister has anaemia along with depression and Schizophrenia and my younger sister has thyroid issues and anxiety
Both sides are not healthy but none of them have any of the issues that I have at all except the Endometriosis.
No one is really super healthy in my family on either side.
I am another Lymie throwing in my two cents. I have become schooled in Lyme in the last several months as I, too, descended into a hell of mysterious, crippling symptoms no specialist could diagnose. Now that I understand Lyme, it was really clear that I had it. Unfortunately, none of the dozen mainstream doctors I saw recognized it. I tested negative in both a blood screening test and in my cerebral spinal fluid, which is wrongly considered a highly accurate test. Most labs miss Bartonella (too many strains to test for) and Babesia (too few infected cells to find). Turns out I have Bartonella, even though the only symptom I had is anxiety. Apparently, having Bartonella can make the neurological and GI symptoms more intense, which is definitely my experience. We're still not sure if I have Babesia yet as Lyme can also cause shortness of breath by causing magnesium deficiency and by infecting the 10th cranial nerve.
What stands out to me as red flags for Lyme in your symptom list is rib pain and shortness of breath. (Those were two of my four biggest problems, the other two being cognitive problems and digestive problems I never did get the muscle or joint pain, making mine a case of neuroborreliosis.) And while you did take some antibiotics, if an infection is deeply entrenched in your body, some oral antibiotics might only make a dent, not cure it.
There's no harm in going to see an experienced LLMD other than the cost (it's worth it!). Lyme and even Babesia are ultimately a clinical diagnosis, and it's the sickest patients who test negative and can take months or years to recover. If you do indeed have Lyme, you'll need IV antibiotics. If you have a coinfection, it can take longer to cure, as the coinfections interfere with the immune system and with the Lyme treatment. And so, even though it seems you've done a reasonable amount to look for it, it's still a possibility. In the absence of another diagnosis, it's better than suffering indefinitely!
One additional explanation: Lyme prefers no or low oxygen environments. The reason it causes rib pain is that the ribs, especially the lower ribs, are high in connective tissue. (I haven't been able to wear a bra in months...can't stand the pressure.) It also goes for the adrenals (lots of connective tissue), nerves, the brain, scar tissue, lining of the intestines, and even the gallbladder. Your symptoms reflect where you are infected. Nerve damage can be permanent so the earlier treatment begins, the better.
I was so excited to read the entire blog here! I started out by searching for "avoid pigeon-hole firbromyagia" and found all of you! I am tired of doc after doc, ologist after ologist giving me the fibro stamp and passing me along with the inefficient protocols of treatment. After 11 years, I almost hate to go because it always seems like such a waste of time and money. I can't tell you how thankful I am to all of you for giving me a different road to explore.
Recently diagnosed September 2011. I have hid my F/M from just about everyone making myself a virtual prisoner in my home. Worst is the fatigue that reduces me to a disabled wreck,unable to get from sofa to kitchen without holding on to the walls for stability, rejecting the use of a disability scooter is my problem at the moment and holding on to the hope that this is just something that will go away... denial i think they call it.
BUT IS IT.... can it go away if I am strong enough?
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