Fibromyalgia and Myofascial pain sympton questions.

[huntr_eq_blonde]

You and I are extremely similar. I am 21 years old and have dealt with CFS and am dealing with trigger points/fibromyalgia and insomnia.

When I was 15 years old, I had a sore throat which promptly turned into a high fever of 104 that took 9+ hours to break. The next morning, my temperature was still 101-102. I remember feeling completely wiped out after. Unfortunately, this feeling persisted and continued to grow worse. No doctor could figure out what was wrong with me. I was sleeping up to 14 hours a day but was still exhausted. Basically, I was bed-ridden. I lost all of my strength and endurance because I didn’t have the energy to exercise. I went from 118 pounds to 108 pounds in a month. Fortunately, I attended a private school and was allowed to compress all of my classes into half a day so I could spend the other half of my day taking naps and finishing schoolwork. After seeing about 15-20 different doctors and specialists, frequenting Children’s Hospital in Milwaukee, and enduring countless tests, I was finally diagnosed with Chronic Fatigue Syndrome. However, I was only diagnosed with CFS because I remained severely fatigued for more than 6 months (which was the “qualification” time period). My dad did an inordinate amount of research on his own and found a protocol from Dr. Jacob Teitelbaum which finally helped to rid me of CFS after three long years.

Just as the CFS had finally been wrangled into submission, I started experiencing chronically tight neck and shoulder muscles when I was 18. This condition had slowly gotten worse since I was 16. Within the past two years, the chronic muscle pain had gotten so bad that I had to take two semesters off from college. It reduced me to taking only 6 credits for three semesters. Seeing an acupuncturist really helped; within the last year, however, it has become inaffective. Similar to the CFS debacle, I have seen around 20 different doctors/specialists for the chronic muscle pain. Chiropractors, PTs, rheumatologists, neurologists, endocrinologists, pain management, internal medicine, holistic practitioners…you name the type of doctor, and I have seen them. I even went to the Mayo Clinic on two separate occasions in 2010, but they weren’t able to help me at all. Unfortunately, doctors know a miniscule amount about trigger points/mayfascial pain, or CFS and fibromyalgia for that matter. I have been prescribed every med under the sun. (I have containers full of prescriptions that I have tried that were either ineffective, created bad side effects, or caused serious allergic reactions.) Again, my dad relentless researched all possible causes of my chronic muscle pain. He had a strong inclination that hyperactive trigger points were the cause. Also, while I don’t have full-blown fibro, I do experience flare-ups when the temperature fluctuates.

{Wow…this is getting WAY too long. Feel free to PM me about CFS/Fibromyalgia. My dad has kept detailed spreadsheets on all the doctors I have seen, tests that have been done, the protocol that I follow (which helped my CFS and aids my myofascial pain/fibromyalgia), the different drugs that I have tried, and tests that have been done or should be done.}

I can honestly say that I understand what you are going through. I hope you can find a doctor that actually knows what they are doing and runs the right tests…something that is unfortunately hard to do. It’s an ongoing, frustrating battle.

[dressagevettech]

I was only diagnosed with Fibromyalgia Syndrome almost four years ago when I was 28. BUT I had been living with some of the symptoms since I was a teenager. I just lived with the fatigue and other smaller symptoms as I figured it was just normal. It wasn’t until the joint/muscle pain set in that I went looking for help.
My GP was a waste of time. So I went to see an IM doctor and he helped me get the FMS diagnosis after a year of trying to find an answer.
I started off on the medications and light exercise route but really got very little relief.
I was on Cymbalta, Lyrica, Prozac, and another one I cannot recall.
None really did much but slightly decrease the pain. They did nothing for any of my other symptoms like IBD, hypoglycemia, myofascial pain, fatigue, restless leg, chronic interstitial cystitis, and the list goes on.

In the last year I have started to make some major life changes and saw the most benefit from them.
Mainly it is to be as active as possible. Light work is fine and all but I didnt see the results until I pushed myself. I rode my horse more, started doing yoga (which HELPS a ton with my myofascial pain), started swimming, walking/jogging, and any other activity I found myself wanting to do.
It is not a once a week thing.
I find myself feeling the best if I do at least the yoga once a day.
And then something more intense at least 3-5 times a week.

I started a few supplements and vitamins. D3 was recommended to me for the bone pain as most people are deficient. A B12 complex is a great thing to take in the morning to get some extra energy that is good for your body. I take melatonin and valariun root before bed every night to help with my sleep. I take high doses of fish oil (or flax seed oil if you hate the fishy taste) as it can help with your joints.
There are other great supplements and things out there for many different things…I am slowing adding to my list as I find what works best for me.

I also have totally changed my eating habits/diet. I know someone else mentioned no meat, and I did the same thing. I do eat fish though.
But the idea is that the meat proteins are so large that your body does not break it down because it expends to much energy. Since we are lacking in energy for our body to spare it just does what it has to and lets the rest go on. I had bad IBD symptoms that went away as soon as I cut out meat.

The main goal of the diet I started was to eat as little inflammatory food as I could. These include: dairy (biggest one!), processed flour, processed foods, sugar (natural sugar is ok like in fruits), artifical sweetners (aspartame is a neurotoxin!!), large amounts of caffine, and in some people meat.
So I am now not quite a vegan but close enough I might as well be.
BUT!!!
I do feel better. More so than I have in many many years.
It takes a bit of time to adjust and for your body to detox out all the things built up in it. But I will say it does work. And I was all about the foods I had to cut out and swore I never would go down this route. But I have as I was too painful and miserable the other way.
Basicly fruits, veggies, whole grains, and lean protein sources are your way of life.
If anything it is a great weight loss program. ;p

But really I have been struggling for the last four years but finally feel I am getting somewhere.
And the best thing about all I do?
I am not on one single prescription medication anymore. And to me that means a ton.

I know I am being long winded here but I could go on forever. Message me if you have any questions. I do not mind helping at all!!

[LauraKY]

OP, what tests have you had for Lyme? If you’ve only had the ELlISA test, it misses many cases of Lyme. Have you been to what Lymies call a Lyme literate doctor? You may have more than one tick borne disease too. My daughter had Lyme, Bartonella and Babesia, I had Lyme and Babesia. My daughter was finally diagnosed at age 23…looking back, the physicians believe she had been infected and symptomatic since she was 11; she had several ELISA lyme tests in that period…none came back positive.

I would be very, very suspicious. I also seriously doubt you were given doxy…it can cause permanent discoloring of the teeth in children. More than likely, it was amoxicillin.

Here’s the Lyme Disease Association’s Lyme symptom list: http://www.lymediseaseassociation.org/images/NewDirectory/Resources/Lyme_Signs_Symptoms_FINAL%5B1%5D.pdf

[LLong]

I’m not sure what test I had for it.

My follow up with the rheumatologist is today, so i’ll ask her about the lymes test(s).

I don’t remember what they gave me for the lymes since it was 18 years ago. But I remember I was in Pony Club and had my D2 or D3 rating and whatever antibiotic it was it made me really sensitive to the sun.

Has anyone heard of Nuvigil? My GP prescribed it to me without explaining it (I need to get a new GP I’ve decided). But I googled it and it looks like it’s for energy, but looks like it’s only suppose to be used short term.

[sketcher]

Anyone with any type of inflammatory disorder should try an elimination diet to see if there are specific food related triggers to your symptoms. For me, the major one was gluten. Before discovering the gluten intolerance I had been diagnosed and treated for everything under the sun. Whatever 'Specialist" I saw diagonsed me with his specialty. Lots of medications. Even a psychiatrist or two. Pain meds. Name it.

I found an envorinmental Dr who diagnosed me with gluten intolerance and I immediately picked 5 things I knew I could eat without issue - for me it was salads with feta made from sheep milk, watermelon, nectarines, grilled boneless chicken breast. For about a week I felt like I had been run over by a truck but then it got better and over the next few months I felt like a different person. Muscle pain, joint pain, depression, fog, inability to concentrate all gone. It was that simple. I had an increase in asthma for a while, ironically removing gluten unmasked other allergy symptoms. But the asthma is gone for all intents and purposes.

I slowly added foods back to my diet, one at a time sans gluten. Some things do drag me down a bit. Sugar affects me for days. Dairy affects me a little. If I have dairy and sugar I start to feel some of the old fatigue coming back but nothing like before. Gluten was the key, the rest of the sensitivities are additive and dose related. Gluten will make me really sick if I have it - first I feel very fluish for a few days and then back to joint pain, muscle stiffness and chronic fatigue for weeks until it works back out of my body.

So, for anyone with any of these disorders, a gluten free trial is in order. There is even evidence that gluten can cause RA.

[kmbhoya2000]

I have thought about different diets, but have had a hard time following through…I have an autoimmune rheumatoid disorder called eosinphillic fasciitis. I have had it since i was 14 (for the last 19 yrs). I have been on NSAIDs, prednisone, plaquenil (hydroxychloroquine), I have had asthma since I was a baby and started Singulair when I was in college which I am still on now. I have been on muscle relaxers, and started Cymbalta about 2 yrs ago. They tried me on Enbrel, but I think that set off my latest flare. One option would be to do a year long round of 2 chemotherapies, which I was ready to do in October I was so desperate. But, when I stopped the Enbrel and we raised my Prednisone again I felt a little better. I have read about the gluten free diets and that dairy can cause problems with imflammation and those with autoimmune problems. I have tried short stints, like a couple of weeks, but have never noticed any difference so got discouraged and would go back to regular eating, which for me is generally healthy, although I do have a sweet tooth and enjoy baking… you really noticed a difference after little over a week? My husband and his doctor are very gung ho on the Paleo diet, and they think it will help me, it’s basically the same a gluten and dairy free…I just am so tired, and have 2 little boys, and it’s all I can do to keep up with them, I feel so worn out trying to start new things…