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Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS).

New to group, don't know where else to turn

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Old 11-30-2015, 02:45 PM   #1
Consider
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Frown New to group, don't know where else to turn

I am literally in bed most of the day, depressed, used to be a happy person, in pain and can't even plan ahead for most days. My life has turned upside down since my PCS, but i recovered and now I have fatigue extremely, body pains, anxiety and sensitivity to pain with digestive issues.

I can't fathom even getting up early, and right now as of typing this, I can't stop crying. I've gotten treatment for depression and although my mood is better, the fatigue continues.

My parents don't completely understand what is up and think I can just get out of bed. Wrong. It's hard lately to do even do schoolwork, in fact, impossible.

I also have Bartter's syndrome and have constant low potassium and magnesium with no change in levels despite supplementation from doctors. I live in a constant state of weakness and pain, with anxiety because 25 years old, I want to make friends and get out of my house.

My boyfriend is concerned for my well-being and wants me to seek more medical care, but I feel like I have done everything I could and I just don't want to deal with another doctor telling me you look fine or you'll be fine.

I came on here because I don't where else to turn, and my life is in a tough spot. I may file for SSI because the town disability services can't cover everything I need. I am racked up in medical bills because of this and need help badly. I need advice and comfort, possibly some hope. Please help.
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College Student in Information Technology and avid PC Gamer, hit the back of my head against a bunk bed and went unconscious for 3 minutes back in 10-28-2012.

Symptoms: Occipital Neuralgia.
2 MRI's and CT normal.

Currently going through Paxil withdrawals, and psych has me on L-Theanine, Benadryl for zaps, and Lemon Balm. It has eased it by a bit, so I am continuing the treatment till 1 month from now.

Made a 98% recovery on April 8, 2013 with only symptoms of pinched nerves/Occipital Neuralgia in the head and is being treated with injections and physical therapy.

Was experiencing:
Migraines, Headaches, Nausea and Vomiting, Panic Attacks and Anxiety, Depression, Major Insomnia, Brain Fog, Tinnitus, Lethargy, Loss of appetite, Major Heart Palpitations, Occipital Neuralgia has eased a bit.

Vitamins and Medicines: , L-Theanine, Omega 3 Super DHA 900mg, Stress B-Complex Extra Strength, Potassium Gluconate 1000mg, Magnesium Malate 1250mg, Vitamin D3 2000 IU, Methylcobalamin B-12 5000 mcg, Vitamin C 500mg, Lemon Balm.

Things that helped me: My Vitamin Regimen, Medication, Earplugs (Love these!), Nature Sounds, Hydrotherapy, Neck Pillow with Heat, Heating Pads, Resting, Being Outside!
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Old 12-11-2015, 12:49 AM   #2
caroline2
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Hi, I see you posted in the FM/CFS group. I was given the FM dx back in 1999 and for many yrs prior I was trying to get my sluggish thyroid supported. I am of the opinion after years of my searching and FM/CFS support group that thyroid is a major connection to the FM/CFS syndromes.

I finally got on desiccated thyroid in 2002 and 10 yrs of depression lifted. I've also worked on my adrenals and hormones and don't know where I am with this FM dx.

You take a good amount of helpful supplements and that's good. I've never heard of Bartter's syndrome. After a lot of years of searching for help I found integrative MD's have helped me the most and support groups online and off line.

Don't know if you have heard about DRibose but I take it daily and have worked with it for some yrs.

**

How are you doing since you posted your comments. I'm much older than you and my issues didn't hit me until in my 50's. Grape Seed Extract is my most valuable supplement and I've been taking it for 20+yrs. Let us know how you are doing. C
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OA onset at 18, now 77. Fibro onset at 61, Hip Replacement "mess" 72 (nerve damage, IT band damage, shorter leg). Otherwise, pretty good health.

Most important supplement: grape seed extract
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Old 01-01-2016, 12:27 AM   #3
Vowel Lady
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I too would consider an Integrative doctor.

I have lupus and related autoimmune disorders. One doctor suspects Fibro, but I'm very unsure of this.

I have found that a good multi vitamin and extra supplementation with vitamin d3 and a b complex has helped me a lot with fatigue.

Additionally, I have found greatly reducing my intake of flour and sugar to be helpful. And I have cut out soda entirely and drink lots of water.

These sound like small things, but over time, they have truly helped my energy levels.

I take a low dosage of melatonin for sleep, but this might not be enough for you. However, it might be worth a try.
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Old 09-21-2016, 06:47 AM   #4
DaveSP
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For magnesium deficiency have you tried soaking in a tub of epsom salt? It contains magnesium and is absorbed through the skin. You need to use a lot of it and sit in the tub for a while.
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Old 05-10-2017, 08:20 PM   #5
reneelynnfox
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Quote:
Originally Posted by Consider View Post
I am literally in bed most of the day, depressed, used to be a happy person, in pain and can't even plan ahead for most days. My life has turned upside down since my PCS, but i recovered and now I have fatigue extremely, body pains, anxiety and sensitivity to pain with digestive issues.

I can't fathom even getting up early, and right now as of typing this, I can't stop crying. I've gotten treatment for depression and although my mood is better, the fatigue continues.

My parents don't completely understand what is up and think I can just get out of bed. Wrong. It's hard lately to do even do schoolwork, in fact, impossible.

I also have Bartter's syndrome and have constant low potassium and magnesium with no change in levels despite supplementation from doctors. I live in a constant state of weakness and pain, with anxiety because 25 years old, I want to make friends and get out of my house.

My boyfriend is concerned for my well-being and wants me to seek more medical care, but I feel like I have done everything I could and I just don't want to deal with another doctor telling me you look fine or you'll be fine.

I came on here because I don't where else to turn, and my life is in a tough spot. I may file for SSI because the town disability services can't cover everything I need. I am racked up in medical bills because of this and need help badly. I need advice and comfort, possibly some hope. Please help.
Hello ,
I feel your pain along with a lot more of other pains...I do not take anything with mine I have a 18 of the points , along with bursitis rheumatory arthritis pain medicines do not work for me unfortunately so I pretty much stuff for daily I lived in Wisconsin move to Florida I've been feeling a lot better. Definitely is a long road after three and a half years I've waiting for my second trial for disability I finally was approved. You just have to find what makes you feel at peace with yourself. I can truly say I've had friends and family turn on me because it disability I used to be a vocational trainer for autistic people and now I barely can do anything for myself that's a very very hard situation to deal with but I also after doing that do not feel sorry for myself. I'm a very very low income it's very difficult for any of us to be able to do anything good for us. Yoga is something I'm going to try to attempt. I also have been diagnosed with post-traumatic stress disorder had a stroke at the age of five which left me with a Tremor in my right arm it is kind of almost unacceptable when people look at you and say will you look fine to me and try to judge you. Just remember we can only do the best we can don't be so hard on yourself I suffered depression anxiety I'm a whole 51 years old LOL.... but everyday I wake up and I do the best I can that's all you can do. Gentle hugs

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