Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Paul,
I was like that in the very beginning of my treatment. I had bad days and not so good days and kept waiting for the "Good" day to show up. It evenutally got better but it took a while. Hang in there.
PS: I think that physical therapy or a chiroprator may help also, good luck to you.
posted
I'm bed written about 25 days of a month for several years - srated 10 years ago. At first I did everything right to prevent a musle loss, now I don't care as I don't have any left.
My first 6 month in the hospital (no treatment helped encephalomeningitis and 3 blood blots in my brain - I was not treated for LD, but that's what I had I know now), my trerapist tought me a visualization technique - it worked a magic.
I was a professional alpine and cross country skier. I cried when she reminded me skiing. But later I rememmbered my friend who loves lelemark skiing. He send me a tape from Sweden/in swedich. So the insruction was out of limit of 7 languages spoken.
First I wanted to through the tape away. But then the immages were comming back. Suddenly I started to remember most of the moves together with the terrain and the scenery.
I worked on it for over 2 month. 3 days after a discharge I was at home in Vail/skiers mecca. I rented the equipment from the tape, strap it on and here I went to the top of the mountain.
In 3 hours I was going down the black run/ for experts only. In 3 more days of practice I was teaching 7 new students in the ski school I worked.
I just hope I would olso visualize my lungs. 10,000 ft above see level has 1/3 of oxygen and my lungs couldn't keep up with my muscles.
Now I'm no role model anymore. I'm making decision, if I want to even live any longer, so my muscles are the last think I worry about. But I still wish I would have the drive to live, to ski, scuba dive, play golf - o,boy I can hit a ball thinking about some ducs head who hummiliated me (lymies could be the best golfers), hike, mountain bike,go 4weeling, travel around the world again... Or just be able to go for a walk.
Wish you all luck. The smallest movement make a big difference when you get better. When that moment is in site, rent the knee moving machine - like the one after knee surgery, that helped me a lot and it's much cheeper than PT if not covered by insurance. I would move around bed and put my arms into it also. It's efortless, every day just set bigger degree of motion.
Good luck. Punkie
Posts: 89 | From Vail, Colorado | Registered: Mar 2004
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posted
Been working on a post to you, but it is not gelling........I want to ask first, have you had a sleep study? Neuro lyme manifests itself into sleep disorders. I was sleeping 22hours per day and thought that I got more than enough sleep but that was not the case as quality of sleep was nil..... I am on a BiPAP now....was tested again while in hospital and found it had worsened. I stop breathing for more than 20 seconds over1200 times that night. The doctor's reaction bothered me more than the diagnosis. He explained that out of a 60 minute hour, I was not breathing for 40 of those minutes. I was only getting minimal oxygenated sleep for 20 minutes per hour. Also an endocrinologist should consider some problem with adrenal and thyroid problems? The mean age at diagnosis in adult patients is 40 years. The most common cause was formerly tuberculous adrenalitis, but now it is autoimmune adrenalitis (slow destruction of the adrenal cortex by cytotoxic lymphocytes), sometimes accompanied by other autoimmune endocrine deficiencies (autoimmune polyglandular syndrome). The most recently discovered cause of adrenal insufficiency is the acquired immunodeficiency syndrome (AIDS), in which the adrenal gland may be destroyed by a variety of opportunistic infectious agents in up to 5 percent of patients in late stages of the disease.
All causes of primary adrenal insufficiency involve the adrenal cortex as a whole, resulting in a deficiency of cortisol and aldosterone (plus adrenal androgen), although the severity of the deficiencies may vary. Dr. Oelkers lists one exception, the syndrome of isolated glucocorticoid deficiency. This is due to adrenal unresponsiveness to corticotropin (a pituitary hormone);responsiveness to angiotensin II is normal. The causes of primary and secondary adrenal insufficiency vary from autoimmune adrenalitis, tuberculosis, systemic fungal infections, to other more uncommon causes, all of which are listed in Dr. Oelkers' article.
"Current Concepts" describes the clinical manifestations of chronic adrenal insufficiency including signs and symptoms. The most specific sign of primary adrenal insufficiency being hyperpigmentation of the skin and mucosal surfaces. Another specific symptom is a craving for salt. Many patients present themselves with symptoms of fatigue, weakness, listlessness, orthostatic dizziness, weight loss, anorexia, gastrointestinal symptoms, including abdominal cramps, nausea, vomiting and diarrhea. Decreased libido and potency as well as amenorrhea (lack of menstrual cycle in women) may also occur.
Has anyone considered the health of your hypothyalmus? This organ controls your temperature, sleep, mood and appetite. Just some thoughts although hopefully it is just something as simple as daylight savings time changes........ sorry this is skekchy, I'm hurting. Lymielu
Posts: 44 | From San Antonio, TX USA | Registered: May 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I spend most my day in bed or laying on the couch....(I try to come on the computer some)
I know I have alot of muscle atrophy....
I figure I'll deal with it when the pain and fatigue are managable...
I 'm hoping once I'm better I can get a dr. to send me to physical therapy once I am well enuff to do mild exercises....
Right now even sitting with my legs bent for an hour causes much more pain so....
I'm just consetrating on trying to get well... once I'm better I'll build my muscles back up.
If your well enuff to do minor exercises or stretches maybe ur dr can send u to physical therapy...just make sure you dont overdue it.
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