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SandySea

New member
Joined
Jan 15, 2014
Messages
1
Reason
DX FIBRO
Diagnosis
11/2013
Country
US
State
FL
Hi Everyone,
This is my first post, and proofreading it I see I've been a bit long winded. Even so I hope some of you will read it and feel a connection. I'm looking forward myself to delving into this site for fellowship and ideas and help dealing with this disease.
I'm "SandySea" from Florida, otherwise known as Marty. I may have been suffering from fibromyalgia for years, but undiagnosed. Since my symptoms have started to worsen in the past year or so, I finally went for help.
For years I thought I had a thyroid problem, but not according to blood tests. So when my symptoms took a turn into exhaustion, and breathlessness when I walked up a flight of stairs I got concerned, I went to my PCP who was concerned about these symptoms and my rapid heartbeat. He sent me for chest X-rays and an echocardiogram for suspected heart problems. When they came back normal, he sent to a rheumatologist.
He diagnosed fibromyalgia (that pressure point in my right hip still hurts from his prodding) in November 2012.
I also thought my symptoms were due to aging and menopause. Here are my most bothersome symptoms:
Every week or so I experience a night where I stay wide awake for 36 to 48 hours at a stretch. With no need for daytime naps.
Standing around caused me to feel exhausted run to the closest chair. Showering was a problem and had to be done quickly. I quit my yoga practice because it became grueling and too much exhausting work.
Also, my muscles feel difficult to stretch. It's noticeable when I do anything physical, even getting up out of bed and walking to the bathroom every morning. Especially my quadriceps - I thought it odd that stepping up on a curb from the street felt a little difficult. Sometimes I'd get exhausted and lightheaded climbing only one flight of stairs.
I was treated for depression and anxiety after an emotional traumatic event 25 years ago which left my body in severe pain for two years, settling in my rotator cuff. In 1989 I never heard of FM. This was when it started, perhaps?
I have no short term memory. Very humiliating when arguing with my husband. Fibro Fog? But very serious and scary. I also forget simple names for things or people when speaking.
Even though I'm a vegetarian, mainly eating fruit, greens and beans, bad constipation.
And maybe NOT due to fibromyalgia?, the bane of my life since early childhood, mouth ulcers. Multiple, extremely painful, continuous with flu-like symptoms of fever and aches all over that sends me to bed for a day or two. (Thermometer shows normal or below normal temp)
Feeling guilt and shame that others think I'm lazy and uninterested when I'm too tired to do anything. I also tend to think this way which is worse.

What I'm doing now? Fight it!:
Diet changes, no salt, no sugar, no dairy or GMO. Organic. I force myself to drink the 8 recommended glasses of filtered water a day
I've thrown myself into a total exercise routine to build up stamina and hopefully well being. 5-6 days of body building and treadmill at the gym. I feel the best after 30 min on the treadmill, but oh so hard to force myself to leave the house every day.
3 days a week of intense yoga, 1 1/2 hours. Some poses are especially hard, standing poses and especially, any pose stretching my tight hamstrings and quadriceps.
Looking into a specialist here in Central FL that believes "stealth viruses" are the cause. (Dr. Daniel Dantini) I do feel virus-like symptoms from time to time.
Looking for a support group in my area to attend.
Researching. (Brain scans in the news, lately, providing new insight)

Sorry this is so long. I'd especially like to hear from anyone who also suffers from debilitating mouth ulcers. Signing off, Marty
 
Marty,
Welcome to the forum. I do not get the mouth ulcers, but do suffer from the pain as you mentioned and the fatigue. I have found that if I rest and take it easy in the mornings, I can get more done in the afternoons. If I rush out in the mornings I am utterly exhausted in the afternoon and have to force myself to get anything done.

If you are able to do the treadmill this is great, but try and pace yourself by going slower and not making your exercise a race to the finish. As for the yoga, why do the intense stuff which can be harder on your muscles. I thought that yoga involved relaxing your muscles and feeling restful and at peace. Fibro causes your muscles to tighten and then therefore they will not relax. It almost sounds like your doing everything backwards by pushing yourself to the edge of your limit.

Most of us have realized that going full speed ahead only leads to more pain and sometimes ending in extended bed rest. I would like to say please slow down and pace yourself and try to relax as much as possible. If you read through the posts on pain management there are lots of great suggestions for helping your body relax by pampering your body.

I am glad to hear you sought and got treatment for your depression and anxiety, as many people shy away from getting help when it is needed.
Please just jump right in and tell us more of how your doing or ask more questions, and give more answers in other members posts. I am glad you found us and this is a good place to make new friends and get the help and support you need. :)
 
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