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Posted By : LoveELO - 5/4/2017 2:33 PM
Hi, new to this forum. Have fibro, with the worst symptom being upper body muscle pain and BRAIN FOG. I really have a hard time focusing, working, etc. This may have very well been discussed previously, but for what it's worth: I was fibro symptom free for almost 5 months after being strictly on the AIP diet (auto immune paleo), home made bone broth, magnesium malate, and D3, with gentle exercise (swimming) and yoga. I firmly believe that in my case the fibro symptoms are due to leaky gut. Due to life circumstances and thinking that I could reintroduce many foods the fibro flared up again about a month ago. I was looking at some of the topics and my impression is that nothing works for everyone. Other than big pharma drugs, what seem to be the most helpful protocols? Thanks in advance!

Post Edited By Moderator (Sherrine) : 5/5/2017 5:57:47 AM (GMT-6)


Posted By : Sherrine - 5/5/2017 5:56 AM
Hi, LoveELO, and welcome! You might have some type of food allergy or sensitivity going on. Diets don't generally help fibro unless you have gluten intolerance, etc. Some members do feel diets help so we keep food discussions on a certain thread so I'll bump that up for you to read.

You are right that what works for one doesn't necessarily work for another with fibro. It's more a trial and error type thing. I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a prescription muscle relaxer called Robaxin that has made a significant difference in my pain. I also walk daily as a gentle form of exercise and I pace myself when doing things. I also use Trigger Point Therapy on myself and get a gentle massage once a month. All of the above have helped me live a full and enjoyable life in spite of this illness. I'm sure other members will pop on with their suggestions also

Be sure to read Fibro 101...the first thread on the forum. It is loaded with good info about fibro and will help you.

By the way, I did give you a subject line so you will get more responses.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we,are here to help you. Hope to hear more from you soon.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
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God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : LoveELO - 5/8/2017 10:13 AM
Thank you Sherrine!

Posted By : Ljm2014 - 5/8/2017 6:39 PM
Hi,

I take some meds but am very med sensitive, so cannot take enough to take care of the pain , by meds alone..

I find topical pain relievers very helpful,

I am taking turmeric (curamed) and it helps with stiffness.

I use many fibro tools, like an acupressure mat, microcurrent unit

But I have had this for decades, so my toolbox is pretty deep

Lj

Posted By : Lilianna Rose - 5/26/2017 8:53 AM
Hi LoveELO,

After accessing many studies about fibromyalgia through my university's online library, I have come to believe that fibromyalgia is precipitated by any stressor, whether that be physical such as a virus, injury or eating food which you are intolerant to, or psychological such as a trauma. Fibromyalgia involves a real, abnormal physiological response to stress where we become sensitised to nonnoxious stressful stimuli. This physiological response seems to involve changes in the central nervous system, peripheral nervous system, brain, serotonergic system and hypothalamic-pituitary-adrenal axis. Different stressors perpetuate the symptoms for different people.

I hypothesise these reasons for why different treatments help different people:
- Each person had their own unique set of circumstances that triggered the onset of fibromyalgia - this root trigger may need to be dealt with (as is the case with my traumatic experiences) and it may not (as is the case with a virus that is now gone from the body).
- Each person has their own unique set of stressors in their lives that they need to learn how to deal with or eliminate as appropriate. E.g. Gluten was one stressor on my body (I turned out to have Celiac) that I had to eliminate, and my psychological disorders are something I am dealing with with the help of a clinical psychologist.
- Each person finds different kinds of situations stressful.
- Different things relax different people. However, there are some activities that most people find relaxing to their minds or that relieve physical stress on their body, which tend to help people with FM: mindfulness meditation, yoga or Pilates, remedial massage, Cognitive behavioural Therapy and Acceptance & Commitment Therapy. I find all of these helpful (I do Pilates rather than yoga). In addition, explore what hobbies you could pursue - activities that you do simply for the pleasure of it. For example, I enjoy reading books, writing stories, colouring in, drawing, playing piano and listening (and dancing if I'm up to it) to music.

Common stressors to look out for in FM:
- nutritional deficiencies (if present, look for any allergies or intolerances)
- poor sleep (treat the cause(s) of poor sleep, e.g. Sleep apnea)
- toxic overload (test levels of mercury, etc.)
- multiple chemical sensitivity
- other conditions that need treatment, such as:
- musculoskeletal conditions (67% of patients with FM have other musculoskeletal conditions)
- psychological disorders (35% of patients with FM have one or more); people with depression also have an increased emotional response to pain.
- endocrinological disorders (19% of people with FM have an endocrinological disorder - e.g. I am pre-diabetic)
- asthma
- cardiovascular disorders

I recommend doing something which you would probably find difficult (I certainly find it hard), but which can be very helpful and revealing: Keep an hour-by-hour diary for a month. Record food and drink intake, physical activity (inc. type of activity and level of exertion), technology use, hobbies, work, pain levels, emotional state, etc. Through this diary you may notice links you would otherwise have never suspected. This diary will empower you to make better informed decisions.

For example, I found that 9 hours after lactose or fructose, I would have digestive symptoms. 1 hour after any food containing eggs, I would have swelling in my throat. If I stayed up later than 10pm, my pain levels would be worse the next day. If I deliberately relax for an hour before bed, I take half an hour to fall asleep; if I don't, I take at least 2 hours to fall asleep, tossing and turning. Also, if I use technology or read non-fiction in the hour before bed - over an hour to fall asleep. Etc.

At the end of a month of doing the diary, I recommend you photocopy it twice and (on one of the photocopies, not the original) highlight any patterns you think you see. Take these photocopies (one highlighted, one not) to your doctor/dietitian/physiotherapist/occupational therapist/whichever health professional you think is relevant for the pattern(s) you think you have noticed.

From the information you gather with your diary, you can work together with your health professionals to:
A) Determine any tests you need (e.g. allergy testing)
B) Develop your own individualized healing protocol that works for you.

This is something I did years ago that helped me go from bed-ridden to doing life fairly well. Unfortunately I have been gaining new health issues over the last year, so now I am looking at doing the diary all over again for myself. Part of the problem was that, even with the self-knowledge, some changes are very hard to make. For example, I've found it extraordinarily difficult to keep to a whole foods only diet and to be in bed at 10pm every night.

By the way, after having studied various health-improving diets out there, I have determined that there are 3 common principles we should all pay attention to:
1) Eat more whole foods and less processed foods.
2) Eat LOTS of vegetables, like 9 serves a day.
3) Do not eat anything your body reacts to (and my personal opinion is that in the case of a mild intolerance, eat it in low to moderate amounts if it is of great nutritional value, provided these lower amounts do not trigger a reaction. Intolerances tend to be about thresholds - you can handle a certain amount of something, and no more).

All the best!
Lilianna
Fibromyalgia, Chronic Fatigue Syndrome, Celiac Disease, Polycystic Ovarian Syndrome, Post-traumatic Stress Disorder, Anxiety, Depression (suspect Bipolar Type II), GERD, Chronic Tonsillitis, Chronic Sinusitis, Multiple Chemical Sensitivity, Multiple Intolerances, Allergic Rhinitis, Lymphocytic Esophagitus, Irritable Bowel Syndrome, Migraines, Scoliosis, Restless Legs Syndrome, Hypotension, etc.

Post Edited (Lilianna Rose) : 5/26/2017 8:22:24 PM (GMT-6)


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