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My Life with Fibro & Bladder Issues




I thought I might include a Fibromyalgia page , do the surfing for you, if you are curious as to what it is . I have had fibro for many years. I originally thought it showed up in my late 20's, with a diagnosis at 40, but now after much research I have suspicions that I actually had it all through my teens as well. 


There are days this disorder make it very hard to function, but there is a drive in me to keep going to not sit around and let it take over my life. But I will admit there are days when I am so tired of feeling 80 when I am in my 40s. Other days it is not so bad. I can deal with it, manage it. there is NEVER a day there is not a symptom, but there are actually great days, at least on my scale of things and those days are true blessings and I am so very grateful for them!!! 


I do what I can to stay upbeat, motivated and proactive in my care... and I do my best to keep it homeopathic and natural. Sometimes that is ill viewed upon, but it is the path I have chosen to follow. Not that I do not believe that others should follow my same path if they feel or find the more more standard  western medical paths are working. It is very hard to do though, staying positive etc. but all I can do is take it in baby steps.  I am a fighter though, and so that is one reason why I walk, a lot. Walking hurts too at times, but at least it keeps me mobile, because if I did not walk , it would get to the point where I could not...I know that day may come, but I do my best to put it off for as long as I can. I know I over do it daily, but again that is the fighter in me. I simply refuse to lay down and let it take over. I have come close many times and well that is when the feeling of wanting it over with appears, I will do all it takes to avoid that... I do not have time, nor desire to have a pity party... life is too short! 


Here is a lot of info from two sites, but also a couple of links if you are interested.
http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm
http://www.nfra.net/fibromyalgia_symptom.php

Fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.


Fibromyalgia, which has also been referred to as fibromyalgia syndrome, fibromyositis and fibrositis, is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities.


FIBROMYALGIA SYMPTOMS CHECKLIST

General Fibromyalgia Symptoms

  • Delayed reactions to physical exertion or stressful events
  • Other family members with fibromyalgia (genetic predisposition)
  • Sweats
  • Unexplained weight gain or loss
  • Cravings for carbohydrate and chocolate
  • Headaches & migraines
  • Vision changes, including rapidly worsening vision

Muscle & Tissue-Related Fibromyalgia Symptoms

Sinus & Allergy-Related Fibromyalgia Symptoms

Sleep-Related Fibromyalgia Symptoms

  • Light and/or broken sleep pattern with unrefreshing sleep
  • Fatigue
  • Sleep starts (falling sensations)
  • Twitchy muscles at night
  • Teeth grinding (bruxism)

Reproductive Fibromyalgia Symptoms

  • Menstrual problems
  • PMS (as an overlapping condition)
  • Loss of libido
  • Impotence

Abdominal & Digestive Fibromyalgia Symptoms

  • Bloating & nausea
  • Abdominal cramps
  • Pelvic pain
  • Irritable bowel syndrome (as an overlapping condition)
  • Urinary frequency

Cognitive/Neurological Fibromyalgia Symptoms

  • Difficulty speaking known words, other language impairments (dysphasia)
  • Directional disorientation
  • Poor balance and coordination
  • Paresthesias in the upper limbs (tingling or burning sensations)
  • Loss of ability to distinguish some shades of colors
  • Short-term memory impairment
  • Confusion
  • Trouble concentrating
  • Staring into space before brain "kicks in"
  • Inability to recognize familiar surroundings

Sensory Fibromyalgia Symptoms

  • Sensitivity to odors
  • Sensitivity to pressure changes, temperature & humidity
  • Sensitivity to light
  • Sensitivity to noise
  • Night driving difficulty
  • Sensory overload

Emotional Fibromyalgia Symptoms

  • Panic attacks
  • Depression (as an overlapping condition)
  • Tendency to cry easily
  • Free-floating anxiety (not associated with situation or object)
  • Mood swings
  • Unaccountable irritability

Heart-Related Fibromyalgia Symptoms

  • Mitral valve prolapse (as an overlapping condition)
  • Rapid, fluttery, irregular heartbeat
  • Pain that mimics heart attack, frequently from costochondritis (as an overlapping condition)

Skin, Hair & Nail-Related Fibromyalgia Symptoms

  • Pronounced nail ridges
  • Nails that curve under
  • Mottled skin
  • Bruising or scaring easily
  • Hair loss (temporary)
  • Tissue overgrowth (non-cancerous tumors called lipomas, ingrown hairs, heavy and splitting cuticles, adhesions)

Miscellaneous Fibromyalgia Symptoms

  • Hemorrhoids
  • Nose bleeds






Causes:
  • Recent research has suggested a genetic component. The disorder is often seen in families, among siblings or mothers and their children.
  • Fibromyalgia often occurs following a physical trauma, such as an acute illness or injury, which may act as a “trigger” in the development of the disorder.
  • Increasing attention is being devoted to the central nervous system as the underlying mechanism of FM. Recent studies have suggested that FM patients have generalized disturbance in pain processing and an amplified response to stimuli that would not ordinarily be painful in healthy individuals.
Treatment:
  • Since there is no known cure for FM, treatment focuses on relieving symptoms and improving function.
  • A variety of prescription medications are often used to reduce pain levels and improve sleep. On June 21, 2007, the U.S. Food and Drug Administration approved Lyrica (pregabalin) as the first drug to treat fibromyalgia. Cymbalta (duloxetine HCl) was approved in June 2008; and Savella (milnacipran HCl) was approved in January 2009.
  • Alternative therapies, such as massage, myofasical release, acupuncture, chiropractic, herbal supplements and yoga, can be effective tools in managing FM symptoms.
  • Increasing rest, pacing activities, reducing stress, practicing relaxation and improving nutrition can help minimize symptoms and improve quality of life.




Bladder issues....
A couple of years ago , as I have mentioned on my blog at the time, I had a series of pretty bad re-occurring UTI's ... or so I thought. Well some were and others, after cultures showed no bacteria and it is suggested that I may have I.C.  Interstitial Cystitis . Now let me say right off the top, I have not had formal testing to determine if this is indeed what was wrong with me and my bladder. I did have many of the symptoms... I also had symptoms of acute urine retention and over active bladder, and I still have the latter. The doctor I was seeing merely has suggested that I.C. seemed likely. He also suggested the fibroids or cysts maybe the root of it all, that they could be blocking my being able to fully empty my bladder and that could cause retained urine to cause infections and the even the ones that seem like UTIS but are not. (*** see update) I had already started to be proactive and add to my homeopathic regime as described in the book by Catherine M. Simone ALONG THE HEALING PATH ... and thank goodness it seemed to be help a great deal I am glad to say. I pray I never go through another "flair" as IC patients call it, and what I call it as well,  but I do my best to not live in fear of what could happen an hour from now or a year from now as far as my health.. it is ever changing. I will keep you updated on this page as I learn more. 

LINKS...
I.C. Help information 
I.C. Hope information 


** Update... Through following many of the suggested home self treatments in the books mentioned above I have managed to not only regain most of my bladder health, but perhaps improve upon what it was prior to all the issues. Having just had surgery for fibroids, a total hysterectomy on April 17th 2014 , I still get flairs now and again, but nothing like it was and it passes in a day or two.

9 comments:

  1. best wishes to you for good health.. I just started Prosoothe in anttempt to postpone a hysterectomy for grueling menstrual cramps>. good luck and God bless.. Erin

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  2. Wow I empathize with all your issues. I too have FM. I've had it since I was in my early 20's. At that time they called it Fibrocytis and most Dr.'s didn't believe in it.

    I also had uterine cysts, polyps and fibroids. I had surgery last year to try to deal with it and during the surgery the Dr. cut my bladder. She didn't realize it at the time. I went home and suffered the worst pain of my life and basically almost died. It was the worst experience of my life and has left me with new problems post surgery. I wrote about the whole awful thing on my blog…starting here…
    http://bisous.typepad.com/bisous/2013/08/things-that-scare-me-how-i-was-forced-to-face-almost-all-of-my-fears.html and there about 10 posts after that I think.

    I hope that you are managing with your illness and have found some viable solutions. I am currently taking a new med called Fibrastol that is supposed to shrink the fibroids. I will know in another 2 months if it has worked or not. After my last surgery I will need to be dying before I will ever have another surgery.

    bisous
    Suzanne

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  3. Ruby what a lovely blog! Your French hobby is so romantic and whimsical. I so want you to be well and go there one day.
    Your health troubles sound immense and debilitating. Has anyone ever suggested to you they might be diet related? I ask because I had fibroids, cysts and endometriosis that caused me terrible pain, and some other symptoms i don't want to go into too much on google. I came to suspect that it was related to the inflammation caused by gluten and eliminated it from my diet and my health improved dramatically. But I'm not a celiac, and therefore the medical profession don't recognise gluten as having caused my issue. But I know for a fact in my being it is my issue. It was very alarming to me to remove gluten from my diet, I love bread! We eat so much of it in our western diet. Luckily I found after a few months of eliminating it, I could sneak it back in now and then!
    I'm obsessed with nutrition and there is a lot more science now on how food positively (and negatively) affects our bodies. Dr Libby Weaver has written a great book I really recommend, "beauty from the inside out" that explains so much about our bodies and health and how food impacts it, if you were curious. It sounds as though you may already be on this knowledge journey after starting to eat the French way. I wonder if you have ever thought of seeing a dietician to see if they can help you feel better? I realise these could be very confronting ideas for you though, given your rituals around food, so I hope I haven't caused any upset for you. Also people probably give well meaning advice all the time, so I know I shouldn't do it, but I can't help myself!
    Love seeing your style pics - I have to say I adore all the ones with the red hair! You have a wonderful panache to all your outfits. I'm looking forward to reading your style blog now too.
    Lucie x

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    Replies
    1. Greetings Lucie...
      Thank you for all your thoughts and concerns. There was a time when I did give up all bread and gluten for several months and it sadly did not make a difference.
      My bladder has gotten somewhat better with having a hysterectomy, I need to edit this page to adjust for that. I still have an over active bladder due to my fibromyalgia, a common symptom.
      I have not seen a nutrition specialist, but I try to eat as healthy as I can and still enjoy life.
      Thank you for all the compliments. So happy you have enjoyed the blog. Be sure to check out older posts under the label section.

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  4. Very sorry to hear that going gluten free did not work for you Ruby. We are all different though, and gluten is not the only inflammatory food - dairy and meat also fall into this category, sugar damages your immune system and coffee causes adrenal issues - all the delicious things I know! All these 'yummy' foods affect the ability of your body to absorb the minerals and vitamins you truly need. A qualified dietician may be able to help you find what your health triggers to avoid are and what foods you could eat more of to help heal.
    It is the wisdom of Chinese doctors to first try to heal anyone ill with food - they have some of the longest lived people in the world in their villages, with vegetables, whole grains and fruits as their staple diet. Our traditional western diet is not actually healthy, even if you are not eating junk food. I was looking at a book on Amazon about nutrients and whole foods by a Chinese doctor, and in the reviews was one from someone who had fibromyalgia and they were on their way to recovery as a result. http://www.amazon.com/Healing-With-Whole-Foods-Traditions/dp/1556434308
    This book sounds huge for a beginner though, I really would recommend Dr Libby's book to help understand how food impacts on our bodies. It's just $8 I think on amazon kindle (if you have one, or the ap to read it on.) I'm sorry to go on about it, but I think there could be hope for you down this avenue that you have not yet explored. Something to think about anyway Ruby.
    I'm glad your bladder has been better since the operation. You have a fantastic attitude and I hope this life delivers good things to you.

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    Replies
    1. Thank you. I will look into it. Not sure I could give up sugar entirely, I have a sweet tooth for sure, but do limit it. I limit meat and skip caffeine though I do have coffee while Our for my walks. My walks are the number one thing that cuts my pain levels in half. I stay away from all prescribed meds, not counting my hormone replacing pills. I will be off of those when I turn 50. I also plan to have breast implants , saline, removed this year if we can swing It, as I believe that they are aggravating my arthritis in my shoulders and chest area.
      A good attitude is the best medicine .I take it so to say daily.��

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  5. Fantastic you are trying to come at it from a natural perspective and you are not a coffee addict. No one could ask you to quit coffee, sugar, sweet treats, or anything entirely. It's really about whole foods and cooking from scratch to avoid all the rubbish they put in things. You would be surprised how much sugar and salt they smuggle into anything that comes in a packet, can or a jar. Something as innocuous as tomato pasta sauce is loaded with preservatives and sugar - things that are marketed as low fat or other health labels are often not healthy. I think you are particularly vulnerable in America, as I know things like potato mash come in powdered form and pumpkin in a can. And whenever there is a can or a packet there are ingredients such as 321, 597 (I'm just making up those number but you know what I mean) - those are all chemicals that aren't great for you. The manufacturers put this stuff in for longer shelf life etc and it's just terrible for our bodies. Check out Dr Libby's website if you can - she's done a Ted talk and is great. Also cherries are great for arthritis - and there are other foods like that you could eat more of that are natural medicines which a dietician could advise you. There has been a lot of scientific advances and they have medically proven how many fruits and vegetables can heal.
    Sorry I've gone on forever again - I'm rally passionate about it! Please don't feel you have to respond to me again, I will be tiring you out. Good luck Ruby.

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