severe body aches

[Bec16]

I have read many things on fibromyalgia about certain aches and pains in muscles and joints.  Does anyone else out there have severe body aches---I mean the kind where you feel like you have the flu everyday?  Why would you take or not take Lyrica?  I really prefer to take a natural and holistic approach.  I have not been diagnosed with FMS.  Been dealing with this for one year in Oct. and still without a diagnosis.  Many tests done and all are OK.  Still being followed by neuro.  Pain is almost unbearable.  I go to accupuncture 2 days a weeks, take herbs and many doctor approved vitamins as well as very controlled doses of hydrocodone.  Please someone give input.  I think Neuro. Dr. thinks I'm crazy for not taking Lyrica.  I am trying to let my body heal and prepare for beginning a family in the next year or so.  

[cino]

I have tried the apple cider vinegar as well, but it did nothing for me. I was on it for months religiously. I am not against it and still do believe in the benefits of it. However for me, it did not help, and after months of taking it, my gout really flared up, so the doctor advised me not to take it anymore. But good luck to those who can take it.

[cino]

I have been diagnosed with severe fibromyalgia with stage 4 pain level in the year 2000. I have had a lot of problems for years before that, but only "officially" was diagnosed in that year. The pain was so severe that I did not sleep for more than 4 hours a night for 7 years. I slept for one year with my whole left side packed in dry ice to give me some relief of pain. I have tried every drug on the market for it, and every treatment i could find, but with no avail. The doctors gave me Lyrica, which at first dose made me feel like I drank a half bottle of scotch. Very dizzy and disorientated, very dry mouth, nightmares, just a bad over all feeling. However Lyrica never helped relieve any of my pain. The doctor kept increasing my dose to a high level of 150mgs 2 - 3 times a day. The cost was outrageous as over here in Australia, it cost me from $80 - $100 per box, and it was only lasting me less than 2 weeks. It was not helping my pain AT ALL....and the side effects were bad, making me dizzy, nauseated, restless, dry mouth, nightmares, etc. The doctor said most of the symptoms go away after awhile, but they didnt go away for me. I just took charge and told the doctor that I am not taking them anymore because of the side effects and it is not helping me and I am paying big money for nothing. I eventually was labelled as a "functional cripple" by my Rheumatologist and was put on a disability pension last year. I have found that dry ice helps my pain.

[LLWB]

Yes, in answer does fibro feel like flu? Yes, Imagine your worse case of flu, then getting run over by a two ton truck...you get the idea. For those who tolerate it, I think Lyrica is great for nerve pain, which is not generally caused by fibro, but does seem to come along with it a lot. I have diabetic neuropathy in my feet and legs. Like you, the relief was almost instantenous. What a miracle. I had to quit taking it, and tonight will be my last tapered off dose. Will be starting neurontin tomorrow. Strictly a monetary decision for me. Lyrica $75 co-pay for me, neurontin $5.00. Just praying it will help some. Glad you're feeling better.

[FRANNIE1132]

I'm so sorry that your mom suffered all those years! I did try the Lyrica. I could barely stand up when I got out of bed in the mornings as I was so wobbly and disorientated, couldn't drive, could barely function on it. After a month of those awful symptoms and almost 10 pounds later my doc said to stop taking it. I was WORSE with it...but with all meds...everyone reacts differently. Personally,I will never take Lyrica again...I did lose the 10 pounds though...

[Bec16]

Thanks, I will try this!  I forgot to mention--only soak for 15 mins. in the apple cider vinegar.  Also, you may try soaking in 4 tablespoons of Sea Salt (not Epsom) to your bath water.

[PlateletGal]

Every day, I add about 2 Tablespoons of Bragg's  raw, unfiltered apple cider vinegar to my drinking water and I swear it gives me energy ! I never knew you could add it to your bath water. Currently I'm doing this detox bath, which also helps with my pain:


4 cups Epsom Salt (Magnesium Sulfate)

32 to 64 fluid Ounces of Hydrogen Peroxide (3%, as found in grocery stores)

2 Tablespoons of Ginger (fresh grated preferably, wrapped in a thin piece of cloth or in a tea ball)

[Bec16]

Thank you so much for your comment!  I have been trying stretching, yoga, and hot baths, but, like you, I can't spend all day in the tub or shower.  I also take Cymbalta and fish oil 3 times a day along with about 7 other supplements.  One thing that I do that was recommended by my accupuncturist is to add one quart of apple cider vinegar to your bath.  I do this often.  Honestly, I don't known if it's just the warm water or the vinegar that helps, but thought you might want to try this.  I will try the magnesium malate.  I must say, since I last wrote in, I broke down and tried the Lyrica.  Within one day my pain was much less.  This proves to me that I do have peripheral nervous system damage.  My doctor confirmed this also.  He stated that he does not believe I have fibromyalgia.  All my doctors still maintain I contracted some sort of viral infection that my immune system could not handle and therefor my immune system began attacking my body while trying to kill the virus.  The result was damage to my peripheral nervous system.  Since Lyrica is so effective with shingle nerve pain, I think this is why it has helped me----because my pain was nerve pain all along---not fibromyalgia pain.  Anyway, thank you again for your response.
Bec16

[PlateletGal]

"The neurologist and PCP have said since March 08 that I probably contracted some sort of viral infection and that my immune system began attacking my body.  They said there was no way to determine the type of infection at this stage.  Is this true?"

I can't answer for Dr. Nicolson, but I agree that you have a successive infection. Although I have CFS, I am also being treated for a successive infection (mycoplasma) and am having success on these pathogen killing treatments.

Best,

PlateletGal

[Bec16]

Thank you so much for your response!  I am a pediatric physical therapist and I have known for some time now that my peripheral nerves were inflamed and probably damaged.  I believe this was confirmed this week when I finally decided to take Lyrica because the pain had reached such an unbearable level.  To my surprise I experienced positive results the next day.  I have continued to increase my dosage and the pain is improving.  My PCP stated that now he believes I did have peripheral nervous system damage which is what I have been screaming for 8 months now.  The neurologist and PCP have said since March 08 that I probably contracted some sort of viral infection and that my immune system began attacking my body.  They said there was no way to determine the type of infection at this stage.  Is this true?  I have had every test done known to man!  The neurologist also stated that blood tests would be repeated in Nov.  He is concerned that my incompetent immune system may suggest a possible underlying connective tissue disease.  I have been tested for Lupus,etc.,etc.  with all normal results.  I do have a positive family hx of autoimmune diseases including polymyalgia rheumatica (maternal GM), and scleroderma (maternal GM brother who died from this disease).  I have been tested for both.  Thank you so much for your response.  Please reply if there is a way to determine if nerve cells are still infected and if so by what (viral or bacterial).  Thank you again.
Bec16

[Garth L Nicolson, PhD]

Response from Prof. Nicolson:  Widespread pain can be caused when peripheral nerves are inflamed.  This can happen when nerve cells are infected with viruses or intracellular, cell-wall deficient bacteria, and an immune response occurs.  In FMS over 70% of patients have identifiable chronic infections, which can be treated and can restore the nerves to the pre-condition state.  Treatment of chronic infections has restored patients, but don't expect your rheumatologist to know this.

[Spaz61]

I, too, am into the natural remedies.  Things I've found that help with the pain are stretching, yoga, and hot showers and baths.  I do still take pain medication, because I can't spend my day in the shower or exercising , and I'm on daily does of Cymbalta, but a 10-minute stretch to positive, uplifting music has a greater impact for me than a pain pill.  Magnesium malate supplements and fish oil supplements are also part of my daily regimen, as I'd read they made a huge difference.  Stress is the biggest issue for me.  When I can manage to eliminate it, I feel 100% better.

[selmaS]

I don't know y ur dr gave u lyrica if u were not dx w/fibro.....but my mom has had fibro since b4 they had a name for it....she was in her early 30's now 72! She was given lyrics, but will not take it....not sure y.
I am not sure what test u had, but some thyroid issues can cause some of the same symptoms.....alot of diff dx can. Keep the tests coming till they find what u have...if ur present dr wants u to take the meds and no more tests...then say no more dr and find someone that will.

Good luck on ur family plans.
Godspeed
"selma"