Having fibromyalgia over 20 years

The doctors that said I've had fibromyalgia over 20 years untreated here in the states they don't recognize it very well I finally got a PA that actually knows somewhat about fibromyalgia. I'm wondering if there's someone out there that has had fibromyalgia as long as I've had it. I was mis-diagnosed & didnt get treated as I should. I'm having a lot of side effects I cannot take the psychotic drugs they give me migraines have a low tolerance to them now it's starting to affect my eyesight and hear the state is hard to get disability for fibromyalgia they do not class it as a crippl they do not class it as a crippling illness. I can no longer work. We thought about the CBC oils which is the Cannabis oils I've used them a little bit and they do help some. So anybody's had it this long let me know what your side effects are and how you been treating it thank you very much

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  • Hi Carlwolf

    I am so truly sorry to read this my friend, and I sincerely hope that you can find some resolution to these issues. I do not understand why they would give you anti-psychotic drugs for Fibro? This would imply that it is all in your head, and Fibro is clearly a real and present illness. According to the *US Fibromyalgia Foundation there are only 3 drugs in the US that are FDA approved for the treatment of Fibro. I have pasted them below:

    *FDA approved drugs for Fibromyalgia

    The US Food and Drug Administration (FDA) is the federal agency for certifying that new drugs are efficacious and safe.

    There are currently 3 drugs that have FDA approval for use in fibromyalgia:

    1. Pregabalin (Lyrica)

    This medication is also approved for use in:

    Neuropathic pain associated with diabetic peripheral neuropathy

    Neuropathic pain associated with postherpetic neuralgia

    Adjunctive therapy for adult patients with partial onset seizures

    2. Duloxetine (Cymbalta)

    This medication is also approved for use in:

    Major depressive disorder

    Neuropathic pain associated with diabetic peripheral neuropathy

    Generalized anxiety disorder

    3. Milnacipran (Savella)

    This is an anti-depressant medication that is similar in action to duloxetine.

    It is only approved for use in fibromyalgia.

    I was wondering if you have tried any alternative therapies such as Hydrotherapy, Physiotherapy, Acupuncture or even a TENS Machine to try and help alleviate your pain?

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Yep and I have tried these meds but they do not for a give me either nightmares or bad migraines or real bad mood swings unfortunately United States is so far behind on fibromyalgia it seems like the UK has more information on fibromyalgia which is a good thing I fall this form a lot thank you for your answer back

  • Hi again Carlwolf

    In the UK the *NHS also looks at alternative therapies, and I have pasted an excerpt and a link below:

    *Other treatment options

    As well as medication, there are other treatment options that can be used to help cope with the pain of fibromyalgia, such as:

    swimming, sitting or exercising in a heated pool or warm water (known as hydrotherapy or balneotherapy)

    an individually tailored exercise programme

    cognitive behavioural therapy (CBT) – a talking therapy that aims to change the way you think about things, so you can tackle problems more positively

    psychotherapy – a talking therapy that helps you understand and deal with your thoughts and feelings

    relaxation techniques

    psychological support – any kind of counselling or support group that helps you deal with issues caused by fibromyalgia

    See self-help for fibromyalgia for more information about exercise and relaxation techniques.

    Alternative therapies

    Some people with fibromyalgia try complementary or alternative treatments, such as:

    acupuncture

    massage

    manipulation

    aromatherapy

    *NHS Choices - Fibromyalgia - Treatment:

    nhs.uk/Conditions/Fibromyal...

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Hello, I was just prescribed Effexor (venlafaxine) for my fibromyalgia and depression/mood/anxiety and nerve pain. I was told that it will treat all three issues. I don't see it on your list of FDA US approved meds. Have you heard of this medication and what are your thoughts. I am also worried about weight gain on this medication. I was mistakenly told by my pcp that my joint pains were from my being over weight. I recently lost 70 pounds and still have the joint pains. So, I don't want to get on this and gain weight. The flare up I have now has gone for weeks and has not subsided. For now I take Tramadol but it's addicting and I am trying not to take it often. From what I read Effexor is addicting too. I think it's horrible that what we need to take to feel better is a drug that will make us addicted. Thank you in advance for your advice. Also, I am in the US and these people and doctors here are clueless to fibromyalgia.

  • Hi Bellaluz

    I am so genuinely sorry to read this and yes, I have heard of venlafaxine, but it is not listed as approved by the FDA for Fibro. It is only listed as ''Off-Label'' for Fibro treatment along with many other illnesses. I have pasted you a couple of excerpts below relating to the drug, what it is used for etc:

    *What is venlafaxine?

    Venlafaxine is an antidepressant in a group of drugs called selective serotonin and norepinephrine reuptake inhibitors (SSNRIs). Venlafaxine affects chemicals in the brain that may be unbalanced in people with depression.

    Venlafaxine is used to treat major depressive disorder, anxiety, and panic disorder.

    Sadly, according to *Drugs.Com it can make you put weight on:

    *Common venlafaxine side effects may include:

    changes in appetite or weight;

    **E-MedExpert:

    Off-label & Investigational uses

    post-traumatic stress disorder (PTSD) 15

    migraine prophylaxis16

    fibromyalgia17

    tension-type headache18

    chronic pain syndromes19

    premenstrual dysphoric disorder (PMDD)20

    diabetic neuropathy21

    hot flashes22

    bipolar depression24

    chronic fatigue syndrome

    irritable bowel syndrome (IBS)

    attention-deficit hyperactivity disorder (ADD/ADHD) 25

    cocaine dependence26

    **E-MedExpert also lists a very long list of possible withdrawal symptoms if you try and simply stop the medication without bringing it down slowly.

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Thank you so very much for your response. I greatly appreciate it. I think I won't start this medicine. It looks too risky for me and I worked so hard for the weight loss, I can't regain what I have lost. And the withdrawal effects are not something I want at all. I have already felt that w the Tramadol and it's real bad but I will look for something else. Thank you. I just can't get used to the idea that I will need pills daily just to function normally and without pain. It's a daily thing lately but when I'm happiest is when I realize I have good days w no pain. I thank God for those days.

  • Good luck Bellaluz

  • I know years ago ...30 ...I was told I had something but didn't know what it was or delve into it the Dr said I would end up in a wheel chair ...I was 25 ..News I didn't want to hear ...Still walking but with excruciating pain in my right leg and lower back partly fibromyalgia partly after RTA last year ...The Dr didn't really know about it then so I let it go and have been quite active upto about 4 years ago when my body seemed to close down that's about the time they sent me to see a specialist and was given the diagnosis ...

  • I know what you're going through stay active and much as you can like you I was diagnosed with fibromyalgia 30 years ago but back then they called it chronic fatigue and muscle fatigue I'm still active and staying that way after 30 years of having it work some exercise rest is the best thing you can do keep your body in shape watch what you eat and watch your weight look into the CBC oils which are the Cannabis oils it helps to rub into the soar muscles and trigger points I hope this helps you

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