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SUNCRAVER's Photo SUNCRAVER Posts: 119
3/23/13 12:26 P

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I have most of the symptoms, also. I have been to every specialist around. Changed PCP 3xs in 3 years bc I am getting no where...one ignore all my issues, one said suck it up and deal with it, this one now says it's all in my head. I have demanded blood test after blood test, MRI CT and specialist after specialist (two rhemie, pain, neuro, neuro surgeon and now a naturalist). I feel the naturalist has done the best so far, but still not very good with relieving my symptoms. And definitely not dealing with the pain issue. My new rhemie was nice and gave me a muscle relaxer. I just started taking it. But I still hurt.
I get the same "talk" every time...u need to exercise more and watch your diet. I have stopped eating added sugar also, help some but not all pain is gone and it hasn't helped with anything else.
I have to been very careful about exercise, I love to exercise, I want to exercise but I, too, get in a flare up when I do too much. I do a gentle walk from Leslie Sansome WATP. But sometimes even that causes issues. I love to swim and am looking into a indoor pool I just found not too far. Swimming has truely been the best for me as long as I am careful. Ik my limits and hate them. I struggle with them daily.

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GLENTWISTLE's Photo GLENTWISTLE SparkPoints: (3,520)
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3/21/13 7:08 P

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Thanks for the list it does help to not feel like a hypercondriac.

Those of you with doctors who are not helping find another. I had to find a new one because of moving and luckily I found a young woman doctor who gets involved to the point of doing internet searches to find answers. She makes a difference just with her listening and not doing the doggy pat like my last doctor.

Gail

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SMIDGON's Photo SMIDGON Posts: 4,200
11/16/11 7:09 P

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I have been SF for 2 weeks tomorrow. I feel some better, but, not totally there yet.

"All things work together for the good of those who love the Lord, and are called according to His purpose."

Romans 8:28

~+~ Janet


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MRS1221 Posts: 213
11/16/11 4:38 P

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Here's an idea if you haven't looked into at all.

I started cutting out added sugars. I have reduced my Added Sugar intake by about 60-70%. Eating cleaner and cutting the sugar has honestly helped me so much! I have more energy and I am sleep better, acutally more rested in the morning with less sleep (although the quality still isn't the best it's better). I am feeling so good and the past 5 days has been amazing!

Clean Eating is like a bad religion- full of obsession and accult thinking.

"How could your embrace be any warmer on a 20 inch waist? I'm Flawless!" Fruit of the Loom Commerical

I am living life with Fibromyalgia (FMS)! I may not be able to do what I once could, but I am better at what I can!


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KJSUPERMOM01's Photo KJSUPERMOM01 SparkPoints: (3,570)
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11/16/11 4:24 P

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I have most of those on this list and feel like i am getting no where with my doctor. I don't know what to do. I get a little better and then I get worse, back and forth. I am tired of living this way!

One day at a time sweet Jesus!


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MRS1221 Posts: 213
11/16/11 11:34 A

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"low frequency hearing loss"

Well that explains a lot!

Well I've got most of those, except the Skin issues. Dry skin though. but we have very hard water.

Edited by: MRS1221 at: 11/16/2011 (11:36)
Clean Eating is like a bad religion- full of obsession and accult thinking.

"How could your embrace be any warmer on a 20 inch waist? I'm Flawless!" Fruit of the Loom Commerical

I am living life with Fibromyalgia (FMS)! I may not be able to do what I once could, but I am better at what I can!


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GOODWITCHD's Photo GOODWITCHD Posts: 1,400
11/7/11 9:00 P

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Wow!
There are so many that are "spot on" ones I just don't even think about because they are just part of my daily life. I will be printing out this list & bringing it with me to my next doctor visit, since I've been getting the (figurative) rolled eyes & head pats from her.
Thanks for sharing
glenda emoticon

Dreams have NO limits. If you can dream it, you CAN do it!



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CTTAGENT's Photo CTTAGENT Posts: 1,616
11/6/11 7:08 P

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I will have to take a closer look at that list, but especially check out the patients website.

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ALASKASKY's Photo ALASKASKY Posts: 6,159
11/5/11 8:42 P

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emoticon I experience many of those symptoms.

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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
11/4/11 2:26 P

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That ringing in your ears can also be caused by anemia, too much thyroid hormone, or high blood pressure ... among ohter things. My dad has issues with tinnitus, because he has an acoustic neuroma, a slow-growing benign tumor on the auditory nerve. It's always worth checking out!...

Kathy emoticon

"The real secret of success is enthusiasm..." Walter P. Chrysler said it, I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called t


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TRY2KEEPGOING's Photo TRY2KEEPGOING SparkPoints: (35,458)
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11/3/11 9:31 P

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Agreed.....about 75% for me too. If I was really honest with myself, it might be higher....

You have to take care of yourself in order to be able to take care of others

Be kind to all because everyone you meet is fighting some sort of battle.



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PAMSCHWETZ SparkPoints: (17,997)
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11/3/11 8:45 P

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yes the majority of those symptoms sound very familiar to me unfortunately...the list of those not affecting me would be very short indeed....if I had to guess a percentage I would guess maybe 75 percent or more would apply to me emoticon

Edited by: PAMSCHWETZ at: 11/3/2011 (20:48)

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SHILOWI's Photo SHILOWI SparkPoints: (7,020)
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11/3/11 8:25 P

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This is a comprehensive list of symptoms that I found in another forum. I have a lot of these and they are things we wouldn't normally associate with fibro:
CENTRAL NERVOUS SYSTEM SYMPTOMS
• dragging fatigue that worsens as the day goes by
• exhaustion at the end of the day
• irritability, nervousness, and anxiety
• depression, apathy
• impaired memory and concentration (fibro fog)
• headaches, migraines
• insomnia (difficulty falling asleep, staying asleep, or falling back asleep)
• non-restorative sleep (waking up unrefreshed)
• sensitivity to light, smell,. and sounds
• chemical sensitivities

MUSCULOSKELETAL SYMPTOMS
• pain most often in the back (upper and lower including neck, shoulders, and buttocks), in the arms (wrists, elbows, shoulders), hips, legs, thighs, knees, ankles, feet, and chest wall
• pain described as throbbing, burning, stabbing, stinging, grabbing, with intensity that varies from hour to hour and can increase with cold or damp weather, anxiety, stress, and activity
• being able to predict a change on weather by an increase in certain symptoms
• muscle spasms and cramps
• widespread stiffness in muscles, tendons, and ligaments
• pain typically worse in the morning and may improve somewhat during the day, but will return in the evening
• numbness of the extremities or face
• diffuse pelvic pain
• chest wall pain (chostocondritis)
• Temporomandibular joint pain, facial and head pain originating in the neck area
• feelings like electrical impulses in the muscles
• restless legs
• feeling of general weakness often described as “poor stamina”
• joint hypermobility
• plantar arch or heel pain

GASTROINTESTINAL SYMPTOMS
• Irritable bowel syndrome
• gas pain, bloating, and constipation
• diarrhea
• nausea
• hyperactivity
• crampy abdominal pain that can be intense and unpredictable
• heartburn

GENITOURINARY SYMPTOMS
• vulvodynia
• vulvar vestibulitis
• vaginal spasms or cramps
• burning discharge
• increased menstrual and uterine cramps
• dyspareunia (painful intercourse)
• bladder pain
• recurrent bladder infections
• interstitial cystitis
• dark, pungent urine that burns

DERMAL SYMPTOMS
• crawling feelings
• itching, scaly patches
• rashes (many varieties) in strange patches
• small areas of pimples occur
• perspiration that is pungent and irritates the skin
• sensitive allergic skin
• dermatographia is fairly common
• Raynaud’s syndrome

MISCELLANEOUS SYMPTOMS
• excessive nasal congestion and mucus or post nasal drip
• brittle nails, inferior hair quality
• scalded or metallic mouth sensations
• bitter (sometimes even salty) taste in mouth
• eye irritation, or blurring, burning eyes
• ringing in the ears or popping sounds
• vertigo, dizziness
• low frequency hearing loss
• heart palpitations
• non-cardiac chest pain



Edited by: SHILOWI at: 11/3/2011 (20:26)
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11/3/11 7:11 P

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Thank you both! I will check out that site.

I know some other people with fibro who have the problem with smelling things like cigarette smoke when there isn't any. I said 'auditory" in my first post but that's sound, not smell lol.

It feels like my body is saying "Enough, I can't cope with life anymore". I've been struggling for 10+ yrs to find something that will really help long term. Even when I've had periods of time when I felt well and have decent energy, it never lasts. So frustrating. Life is passing me by most of the time and I can't keep up with my husband and friends.

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SMIDGON's Photo SMIDGON Posts: 4,200
11/3/11 6:45 P

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Girl, you are talking about me! I have those symptoms. Even being on anxiety meds I have them.

I even have at times horrible smells that no one else can smell. What is it?

Janet

~+~

"All things work together for the good of those who love the Lord, and are called according to His purpose."

Romans 8:28

~+~ Janet


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STARSAPPHIRE57's Photo STARSAPPHIRE57 SparkPoints: (36,323)
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11/3/11 6:42 P

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SHILOWI, I do understand how you are feeling--it's so hard to find good medical care for fibro and related disorders. The ringing in the ears is called tinnitus and sometimes is a side effect of some medications--aspirin is one. Many people just have tinnitus due to no known cause...

The tingling in the arms and legs is a symptom of fibro, as are the insomnia and sweating. Excessive sweating is also a common side effect of antidepressants... I can't offer any idea on the smells..

I do not tolerate exercise well at all. If I overexert (and that could just be grocery shopping in a large store), I can have extreme fatigue and excruciating pain for 1-4 days afterward.

You might want to check out the site Patients Like Me; at http://www.patientslikeme.com. It is a great site, totally free, that allows you to track symptoms, medications, side effects, etc. and see other patients with you same health issues as well. They have discussion forums and private messaging as well. If nothing else, you know you are not alone!

I wish you luck on this journey...soft hugs, Pam

Pamela
Co-Leader SP Mend Your Mind/Body Connection Team: teams.sparkpeople.com/mindbodymend

Excellence is the result of caring more than others think wise, risking more than others think safe, dreaming more than others think practical, and expecting more than others think possible.


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SHILOWI's Photo SHILOWI SparkPoints: (7,020)
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11/3/11 5:59 P

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I have my care thru an HMO and have never been able to get much help. I have not seen a specialist. However, my primary Dr did send me to mental health so I could get meds for anxiety, and it was the psychiatrist who acknowledged the issues of adrenal problems in relation to many of the symptoms I have, both phsyical and with anxiety. Also, I was tested and do have hypothyroid ( levels are good now on meds) and below normal cortisol level.

Anyway, aside from fibro and OA pain and chronic fatigue, I have some weird symptoms. Almost chronic ringing in the ears and tingling in my arms and legs which gets intense with a flare. When I am doing especially bad, I will have insomnia, rapid heartbeat, sweats, and a general feeling that I just want to jump out of my skin. It feels like a bad reaction to a drug. Sometimes I have smell hallucinations like smelling cigarette smoke even tho there is none around.

It's so discouraging to cope with this stuff that never gets better, no matter what I do. And most people, including my Drs, do not understand.

One more thing - I notice that many of you are able to exercise a lot, and aside from pain, it's not an issue for you. Is anyone besides me very intolerant to exercise? I get a bad fatigue flare along with intesifying of ringing in ears, tingling in limbs etc, within days if I exert myself too much.

Edited by: SHILOWI at: 11/3/2011 (19:12)
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