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true or false is there a cure

Posted , 9 users are following.

derek1979
derek1979

many people have told me there is a cure but professionals like doctors and my rhuematologist have said there is not the trouble is they say they dont actually know what the cause is as everyone is different so how can you cure what you dont know i have been researching into other professionals theories and run them buy my rhuematologist and psychologist and they have said that they dont believe there is a cure yet and i have spoken to a specialist who has been researching fibro for over 40 years now and he said there is not a cure yet i have heard so many comments on this and waqs woundering what others thought on this subject and how many people think its true or false

1 like, 74 replies

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  • Meg53
    Meg53 derek1979

    Posted

    My specialist told me if he could find a cure, he would get a Nobel Prize. I think there is lot about the way the human body functions that modern medicine is still to unlock.

    I say I wish they would get on with it, I want my old life back!!! 😥

    • kaz_40
      kaz_40 Meg53

      Posted

      Here here wouldnt it be great to get our old lives back? 1 day hopefully gentle hugs take care x
    • Meg53
      Meg53 kaz_40

      Posted

      Thanks Kaz, many gentle hugs for you too. 🐼
    • derek1979
      derek1979 Meg53

      Posted

      me to and i hate it i feel like a 90 odd year old cant walk cant speak properly cant hardly move but as much as we want our old life back its not going to happen we are not even a shadow of our former selves and it sucks all we can do is be there for eachother and im there for you and its taken me a long time to come to terms with it and this discussion has done what i set out for it to do and thats prove my point if there was a cure it would be called a cure and not a theory so just keep hoping and dont give up hope as its what helps to make us strong and thats a place we all need to be not in a depressing place keep on fighting and never give up dont let fibro win x
    • Meg53
      Meg53 derek1979

      Posted

      Thank Derek, I love your attitude.😀
    • derek1979
      derek1979 Meg53

      Posted

      thats ok and thats what friends are for x
  • HOTpicks99
    HOTpicks99 derek1979

    Posted

    Apparently there is no cure suppose the best way to carry on is try to relax have a stress free life andmgo forward well thats what they tell you should do but honestlythey need to come out in the real world cos theres no such thing as a stress freeworld sad
    • derek1979
      derek1979 HOTpicks99

      Posted

      there not but at least there is this forum and it does help to take some stress away x
  • christine26761
    christine26761 derek1979

    Posted

    My thoughts with  lots and lots of research plus specialists views, are there is not a cure..although there is remission..I know people who have been in remission for years..I go in and out of remission too..but only for months and weeks not years-yet anyway...I live in hope..that's all we can hang onto sometimes..Then I get a flare up and know that it's not for too long..I have had Fibro for over 23 years and 10 years before that undiagnosed..I don't know whether the length of time Ive had it or not,  has anything to do with it...but there is light at the end of this rotten dark tunnel..I take lots of supplements, I also have Sorjrens Sydndrone-(which has dried up some fluid in my ear making me dizzy and off balance for the last 10 yrs-there's nothing at all I can take for it either..so I'm dizzy/off balance 24/7 but we learn easily enough how to live with that..walking sticks and rollators are excellent) .Osteo Arthritis...Asthma... CFS..that seems to go along with Fibro, they have one common denominator..they are all autoimmune....so I eat Paleo style..(there is an Paleo Auotoimme Protocol too) .soo good for my health and weight, if your over or under corrects itself..worth googling apart from that I take 25 mg Amitriptyline per night ...great  for muscle spasms/pain sleep all night....which makes me able to handle anything that comes the next day...Derek being diagnosed with Fibro is not a death sentence..there is always remission..many of us on here cope...the best way we can...so please continue blogging and asking lots if questions...there are years of experience on here,,we learn soo much from eachother...always trying to be empathetic, positive and encouraging..to eachother...be blessed and have a lovely weekend..:-) xx
    • derek1979
      derek1979 christine26761

      Posted

      well put i know its a great place here for support and with years of experience what more support could we ask for keep up the good support ladies x
  • CharliS
    CharliS derek1979

    Posted

    Hi Derek,

    I can't but help thinking, and my thoughts are not based on experience or in any way knowledge, npurely instinct, but that there is some germ in my body that my body is trying to fight and instead is hurting itself. You know sort of like that slap game kids play. My white blood cell count has remained just a little higher than normal over the past few years, as if my body is fighting an infection but no infection can be found.

    A lady at gym the other day said her hustband was suffering terrible lower back ache after a car accident ten years ago and it would not go away. He read some article somewhere, that i am still trying to source, that he took to his doctor. This article explained something about some persistent infection that sits in the spinal column that can only be cured by 100 days of antibiotics. His doctor let him try and he has had no pain for a year.

    A pipe dream maybe but it kinda fits my theory so trying to find the article or bump into the lady again and ask her to send it to me. I just dont feel like what we are going through is normal and a big part of me refuses to accept this as it for the rest of my life. I think that the medical industry expecting us to is bull. I am trying everything i can and praying to get the doctors on board.

    • loxie
      loxie CharliS

      Posted

      Charli - your words ring a very loud bell with me.  For many years I've had terrible issues fighting off infections, from mild dental infections to major ones following surgery.  Whenever I have blood tests done by the doctor they occasionally mention a 'small concern' which relates to very slightly raised levels of something indicating an infection but seem to brush it off as of no relevance.  Some years ago I worked for a company with their own medical centre on site and the practice nurse there was authorised to take blood and did a whole range of tests on me.  She (unlike the GP) gave me the sheets and explained them, showing me that something which was at a high level related to a deep rooted low level infection. (I cant unfortunately remember what the details were it was so long ago).  Recently I got a chest infection - my GP was convinced I had CPD and referred me to the CPD clinic at the surgery.  The CPD nurse did all her tests including breathing and informed me that I most definitely didnt have CPD but I did seem to have a recurring chest infection which had flared up causing the recent issues.  She also was the only one who explained that my occasional high temperature episodes may not be just 'age' or hormonal but may actually be a low grade infection flaring up.  I'm going to see if I can find an article like the one you mention and thrust it at my doctor for some answers.  

      On a connected point - I am allergic to penicillin and have developed a resistance to some of the mycin antibiotics, which don't work at all.  Via a referral by my dentist I saw a dental implant surgeon and was having a bit of a nightmare with infection after infection from the work being undertaken to prepare for the implant and then the implant itself.  He stated quite clearly that penicillin would have been most effective but because I couldnt take it my infections were taking hold and that in his long years of experience, patients with penicilin allergy had reduced chances of success with implants.  He actually asked me if I had pain resistance problems, which I do (I regularly have real issues when having dental work in them getting the nerves numbed enough to work on the tooth).  It's all too much of a coincidence not to follow this up.  Thank Charli - you've given me at least another avenue to explore.

    • loxie
      loxie

      Posted

      Within a minute of searching online for some information related to lingering infections, I found the following info.  My god, I could tick so many of these off as my symptoms. One other comment in the article was 'An enterovirus can be repeatedly recovered from the CSF (cerebrospinal fluid) over a period of months to years' - which links precisely to your comments about sitting in the spinal column for years. 

      Symptoms Commonly Seen for Persistent NonPolio Enteroviral Infections

      Listed here are common symptoms of persistent non-polio enteroviral infection. This list is from observations made by a californian infectious disease centre.

      Respiratory and/or gastrointestinal symptoms or just flu-like symptoms (fevers, body ache, headache etc.). Few virus infections present with both respiratory and GI symptoms.

      Upper respiratory tract symptoms such as runny and stuffy nose, sinus congestion and pain, sore throat, ear pain, difficulty in swallowing, loss of smell or taste.

      Upper and lower gastrointestinal symptoms such as nausea, indigestion, reflux, abdominal bloating, upper and lower abdominal pain, cramps, constipation alternating with diarrhea.

      Sudden weight loss due to significant stomach problem or decreased caloric intake, or weight gain due to inactivity.

      Numbness in the limbs, muscle twitching and spasms. Some experience facial tingling and numbness.

      Many types of headaches.

      Bone, muscle, and/or joint pain. Foot pain is quite common.

      Chest pain, palpitations and tightness

      Cough, shortness of breath, wheezing

      Low blood pressure

      Heart arrhythmia (irregular heartbeat) or tachycardia (rapid heartbeat)

      Intermittent low grade fever, chills and night sweats.

      Reproductive irregularities and pain.

      Prostate issues and pelvic pain.

      Blurred vision.

      Herpangina (blisters or ulcers over the roof of the mouth). Ulcers may form in the mouth, throat and for females the vaginal/cervix area.

      Recurring yeast or bacterial infections due to a weak immune system.

      Adrenal surge or dysfunction. High cortisol levels or low cortisol levels.

      Psychological problems, anxiety, or depression.

      Mental fatigue when trying to concentrate on tasks. Cognitive issues are very common as are short-term memory problems.

      Sleep disturbance.

      Seizures are rare but do occur.

      Vitamin and mineral deficiencies. Many become anemic.

      Swollen Lymph nodes in the neck and in the armpits

      Rash

      Organs that can be affected by enteroviruses: heart, pancreas, lungs, liver, spleen, colon, ovaries, testicles, epididymis, thyroid, muscles, skin and the central nervous system.

      Enteroviral infections can trigger dormant viruses to reactivate, such as HHV6, Epstein Barr Virus, CMV, and chickenpox– all herpes viruses.

      Children can show symptoms, but parents may not recognize them especially if they are intermittent.

      Children can have many of the same adult symptoms – a flu-like illness, fever, mouth ulcers, abdominal pain, loss of appetite, a rash, headaches, leg pain and weakness, muscle twitching, reflux, cognitive dysfunction and perhaps heart pain and arrhythmias. A diagnosis of chronic fatigue syndrome/myalgic encephalomyelitis in children is possible after three months of illness.

      An enteroviral infection should be suspected if the same symptoms recur every month.

    • bronwyn97278
      bronwyn97278 loxie

      Posted

      Hi Loxie; I completely agree.....from my earlier research into causes, I too, came across the "herpes virus" lingering in our Spinal Fluid/Meninges Lining of brain...........now that we have Confirmed what we all have thought, and our symptoms tick the box, how do we get the Professionals to listen and treat this Virus.............100 days of a Workable  anti-biotic needs to be found....even if it just gives us some days of peace????  I have had my Spinal  Fluid  tested, in the Very beginning when they thought it may have been MS......wonder if they still have the results in their Archives????   Bron
    • charlotte1824
      charlotte1824 loxie

      Posted

      Hi Loxie,

      Did the info suggest what the treatment was for a enteroviral infection ?

      I can check off nearly all of those symptoms but i bet its antibiotics and they are harder to get than the crown jewels! Ive always thought that they should just give a few week trial and see if it starts making a dent in symptoms.

       

    • loxie
      loxie charlotte1824

      Posted

      Hi Charlotte - yes treatment for infection is usually antibiotics and you're correct, getting doctors to prescribe the RIGHT ones is hellishly difficult.  I had to get a private prescription from my dentist for a particular kind when it was found I was resistant to the usual erythromycin, metronidazole, etc. and they werent working.  I cant remember what he prescribed but it was a low dose over a full three month period and it was the only thing that stopped the deep rooted infection in the bone in my mouth.  As a result of not getting anti-b's or not getting the correct ones, I ended up with a nightmare infection with necrotic tissue etc.  Doctors are so scared of over prescribing due to MRSA type infections with anti biotic resistance but there are anti-b's that work, the problem here is that they are expensive and practices won't prescribe them long term due mainly to cost.
    • CharliS
      CharliS loxie

      Posted

      Thanks for your reply loxie, it really helps to hear this from someone else. I want to do my research and then take this to my doctors.
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