Pills, pills, pills. If we aren’t dealing with some form of pain directly, then we are dealing with other FMS-related conditions.
We know all too well how trying this illness can be, as well as the importance of staying on top of the conditions to reduce flares. It is like a house of cards. Following are a few of the most common conditions associated with fibromyalgia and how I have dealt with them.
Irritable bowel syndrome
I have had IBS-C (irritable bowel syndrome, constipation-predominant) since I was a young child. Coming from a stressful home, I would sometimes go without a bowel movement for more than a week. The onset of cramps, spasms, and pain was intense, and they worsened significantly, as my fibromyalgia did. The spasms and sweating would lead to feeling as if I would faint (one time I actually did). I assume this all is due to the vasovagal response, a reflex from the vagus nerve’s interaction with the nervous system.
I still feel like a child at times when I curl up while sitting on the toilet, rubbing my abdomen and hoping the episode will end soon. Staying away from caffeine as much as possible (aside from green tea), not overwhelming my diet with too much fiber (like uncooked vegetables, nuts, multi-grain bars/cereal), in addition to eating very little red meat, help to deter episodes of colic. My gastroenterologist recommended Colace to aid in movement because standard treatments like Miralax were inconsistent, and others (Dulcolax, Phillips, etc.) caused intense cramping that was as severe as the episodes themselves. On those rare occasions when I have spasms, or my colon is irritated the day after an episode, I have a prescribed anti-spasmodic.
Gastroesophageal reflux disorder
Like the irritable bowel, I’ve had this since I was a teenager. However, it did not cause a large problem until my fibromyalgia was at its worst — when it contributed to the development of two small ulcers. I take my medicine in the morning a half-hour before eating. I also make sure I don’t eat anything four hours before bedtime. Should I develop a mild case of indigestion, I make sure I sleep on my left side. The reason is medically unknown, but a study found that longer times for clearance of stomach acid occurred in persons who were given a high-fat meal followed by a late night snack and laid on their right side (instead of their left). I also find sleeping with multiple slightly elevated pillows helps reduce the occurrence of GERD.
Endometriosis
The onset of my menstrual cycle was not simple. A year before I began, I had bouts of fatigue and light-headedness. The number of days was outlandish, anywhere from 26 to 42. As the years went on, the cramps and bleeding worsened. I was one of the women who required the heavy flow, overnight, with wings maxi pad. The idea of using a tampon only made me cramp more.
The fatigue started the day before onset and could last for a day or two. The sleep was restorative, but the exhaustion was debilitating. My mood would plummet suddenly even when I was having a good day and make me vulnerable to sudden anxiety attacks. In my late 30s, I began to experience a pulling sensation on one side of my uterus. Having had adhesions in the past, I was very concerned they had returned. After a thorough discussion with my doctor on the cost and benefits, taking oral contraceptives on a continuous basis has turned out to be the best solution.
Migraines
I was accustomed to having headaches since I was very young, but nothing of this magnitude until I was in high school. Taking the standard buffered aspirin was useless; I might as well have taken a placebo. My trigger was a result of certain allergens (dust, mold, certain grasses). Many years of allergy tests, shots, and a mixture of corticosteroid medications finally led to the right treatment. It has helped resolve the problem, at least for migraines. If only other types were irradicated, too.
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Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.
Hi Again Lori,
Sorry to hear of your problems. It’s amazing how many organ systems FM )&)$ up! I have had GERD type stuff several times, recently for several months, getting endoscopy and taking a PPI that is scary IMO. Didn’t really help much either. One thing I have found, another FM related disorder not mentioned, is chronic sinusitis and allergies (mentioned a bit by you.) After all that useless PPI med, my GI decided to “go north” not south, as he amusingly put it ie. Have me address sinus problems probably contributing to GERD. I did not want to see my ENT yet again for nasty procedures so I decided to investigate that on my own. I did use a steroid nasal spray for a while as I think postnatal drip greatly contributes to GERD. I also started taking zn acetate lozenges twice daily, from Amazon but made by Life Extension (no financial interest!!). Life Extension has a good research report on this compound free on their site;it has been ignored by mainstream med for decades but I take it now at the first sign of nasal problems due to anything. And it’s cheap and easy to just suck until dissolved. Good luck.
I have had terrible problems with post nasal drainage (a runny nose going down your throat) as long as I can remember and it’s gotten really bad in last few years. Will Zinc Acetate help this? I know about its effect on colds having used it for those. Any info will be most appreciated.
I also had extreme endometriosis along with ovarian cysts and early stage cervical cancer. All of this resulted in my needing to have a hysterectomy at 33. I’m 61 now and diagnosed with FMS/CFS in 2005. Because of all this I’m wondering if I had FMS much earlier than I thought??
Aside from myself I’ve had fibro for 18 years now and my grandsons think it’s ridiculous that they can’t hug me tight because it hurts does anyone else experience this
I have six specialists
And that take them 27 pills a day for the last 18 years
Anyone else have the same
My medical journey from 13 to 69 years old.
Hi folks,
This fibromyalgia is a terrible disease. As I look back now at my teenage years and connecting the dots throughout my life, I believe I had fibromyalgia very early.
Here goes:
13-14 yrs – hospitalized and undiagnosed colon condition. Thought to be “growing pains” or extreme pain in legs (maybe due to stress of going from grade school to HS)
IBS throughout my life
30 yrs – 4+ advanced endometriosis requiring major surgery and treated with BC pills (high in progesterone) until I was ~ 55yrs old – menopause. Unable to have children. Stress of divorce at 25/26. Herpes symptoms: skin and mouth sores.
~ 45 yrs – leg pain in morning. I knew at this point there was an existing unexplained condition since there was no reason to feel like I was periodically in such pain. Stress of work conditions.
50yrs – diagnosed with interstitial bladder cystitis and treated with Detrol for urge incontinence. Stress of yet another divorce and 1998 ice storm in upstate NY.
52yrs – counseling for anxiety and treated with antidepressants
53 yrs – diagnosed with potential CFS. Also diagnosed with hypothyroidism and treated with 25mcg of Levothyroxine.
~54-55yrs – I suspected fibromyalgia so PCP treated me with Cymbalta at 30mg. Stressful job. Move from NJ to PA.
~56- 60yrs diagnosed with fibromyalgia by rheumatologist. Cymbalta increased to 60mg and then to 90 mg.
~60-65yrs multiple surgeries for multiple joint issues(feet, shoulder after a fall, neck (3 discs replaced), feet again. Recovery from 10 mos of prednisone treatment. A terrible experience.
65-67yrs chest pain and unusually fast pulse. I had multiple cardiac tests – no heart issues diagnosed. GERD, hiatal hernia, problems treated with omempraxole for a year. Swallowing issues, dilated esophagus. Stress related to job layoff due to mergers.
67-69yrs – ER trip thought to be kidney stones but undiagnosed. Marital stress. Back surgery resulting in multiple complications. Amplified pain, bladder shutdown, colon shutdown, right leg from lower back to toes numb and horrific pain. Couldn’t walk. 2nd surgery a week later. No pain resolution. Prolapsed rectum. PT in aqua therapy and pelvic therapy(8 wks) for 8 mos. Increased Cymbalta to 120 mg. Multiple tryouts on various meds. Marital counseling. Stress of relocation from PA to NH.
Sept 28 (Present) – walking better but with limp and continued pain in rt leg from lower back, buttocks to toes. Colon issues and prolapsed bowel continue. 2nd opinion obtained and diagnosed with arachnoiditis due to surgeries and fibromyalgia conditions. I’m on Neurontin with multiple side effects (see article on the good, bad and ugly), naproxen and dilaudid (and Movantix for constipation), Cymbalta, Levothyroxine, Ambien for insomnia. Multiple supplements. Wellbutrin, ezetimibe, Lipitor. Detrol removed. Now need to FU for potential liver issues.
It’s been a long journey. You can see that the fibro symptoms escalate with age, trauma of multiple surgeries and presence of stress and anxiety. That’s my story. I hope my shared experiences will help someone out there.
What a horror show you have been through. I too believe I have had FM since childhood but have struggled with it as doctors do not want to diagnose it.
Finally I have gone to a Centre for Biological Medicine here in Ontario and they are treating me with therapies originating in Germany. All my life I have been very anti-pharmaceutical and your story confirms my strong beliefs. Once you start taking drugs, its a downhill slope and other symptoms develop that could have been avoided by going the natural route.
The therapies I receive are specifically made for me and me only.
This disease cannot be treated by blanket pharmaceuticals as we are all different and all require different therapies to help our bodies to heal themselves.
We were created in such a way that our bodies do have the capacity to heal themselves and we need only get help from the right place.
My sympathies are with you.
JK
Jeanette, I’m in Calgary Alberta, can you please tell me the name of the Biological Medical Centre so that I can see if I can work with someone on my symptoms?
Centre for Biological Medicine:
http://www.biologicalmedicine.com
Maybe they can suggest someone in Alberta to help you. If you look at their website it explains exactly what they do. They are also very active in helping cancer patients.
I hope you can find some relief. Jeannette
It most certainly is a progressive disease unfortunately it just gets worse. Another thing that they rarely tell you is that cholesterol medication can cause severe muscle pain. I thought I was fine when I was taking Lipitor didn’t realize that it was making me ache a lot worse than normal. Took me a while to put two and two together. Good luck Teresa and thank you for sharing.
Wow! 27 pills a day?!? I, too, was taking a lot of Meds. I went thru and weaned off many of them and found they were doing nothing for me. No change of symptoms when taking them or not taking them. I now take a very low dose blood pressure medicine and cymbals, which has been a god send for my pain and brain (I call it my brain glue) for years, and a pain medicine as needed. I recently added CBD oil, which I took for a couple of months and then stopped it for about a week, during that week I realized it was helping pain levels and I was using less pain med, so back on CBD OIL. So often the doctors add Meds for new symptoms, but don’t take away any of the old Meds. Have a conversation with your doctor about reducing the number of Meds.
I aso have all of the above, but one thing not mentioned here is peripheral neuropathy. I am 42 and have had it developping for many years, but have only had it bad in the last 3. My pain specialist believes it has to do with fibromyalgia causing tights muscles and tendons that clamp down on our nerves and essentially strangle them to death, much like diabetes’ inflammation strangles nerves. I used to be a musician and artist and can now barely open lids, button buttons nor do many more medial tasks. Just an fyi for those who need to know.
There’s a lot of things that they rarely mention that go hand in hand in FM including urinary problems like urinary retention, cognitive dysfunction, extreme sensitivity to noise and smells, fever, night sweats and restless leg syndrome, just to name a few. Makes you really feel like you’re going crazy. A lot of these things I didn’t even know where associated with FM until years after a “diagnosis”.