-------------------- Ann-OH Posts: 1746 | From Ohio | Registered: Aug 2014
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
That's a tough question because I was diagnosed with a mast cell disorder 9 years after lyme treatment. I had reactions to chemicals and cigarette smoke years before I was diagnosed with Lyme though.
My worst symptom is insomnia. When I can't sleep everything else is worse like my vision, tinnitus, anxiety, brain fog and fatigue.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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posted
For me, fatigue has been a very stubborn symptom. I was no higher than 3 on a 1-10 scale for decades, and now finally have inched up to 5.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
For Hubby, it would be muscle aches.
Posts: 2602 | From USA | Registered: Aug 2011
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Great article Ann!
akinwlf- agree, insomnia is the biggest nemesis. Sleep is my greatest healer!
Lingering symptoms on my 10 year anniversary since getting bit (delayed diagnosis for 3 years) ;
Common Varible Immune Disorder with monthly infusions for life! (Lyme destroyed my immune system)
Lyme arthritis in neck, shoulders, back, hips, knees, ankles.
IC Bladder
Tinnitus, vertigo, sinus pressure
Neuropathy
1 second short-term memory (lots of info somewhere in my brain iCloud)
These are on an engaged revolving rhythm, everyday is different. Never give up, keep fighting. 💚
Posts: 3217 | From Florida | Registered: Nov 2016
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Daisys, what is the scale for measuring fatigue? I didn't know there was one.
And so many of us have lingering symptoms of so many kinds!
-------------------- Ann-OH Posts: 1746 | From Ohio | Registered: Aug 2014
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posted
I've been asked time and again to measure pain, energy, or overall mood by 1(worst) to 10 (best) and always find it a challenge.
I find it easier to judge my current state with this scale. I look back over what I have been doing and find where it is in this list.
Quality of Life Scale (measure of function)
0.Non-functioning Stay in bed all day. Feel helpless and hopeless about life.
1. Stay in bed at least half the day. Have no contact with outside world.
2. Get out of bed but don't get dressed. Stay home all day.
3. Get dressed in the morning. Minimal activities at home. Contact with friends via email and phone.
4. Struggle but fulfill daily home responsibilities. No outside activities Not able to work/volunteer
5. Do simple chores around the house. Minimal activities outside of home 2 days a week.
6. Work/volunteer limited hours take part in limited social activities on weekends
7. Work/volunteer for a few hours daily. Can be active at least 5 hours a day. Can make plans to do simple activities on weekends.
8. Work/volunteer for at least 6 hours daily. Have energy to make plans for one evening social activity during the week Active on weekends.
9.Work/volunteer/be active 8 hours daily Take part in family life. Outside social activities limited.
10. Go to work/volunteer each day. Normal daily activities each day. Have a normal social life outside of work. Take an active part in family life.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Thanks Daisys, I love it! I am a 7.
-------------------- Ann-OH Posts: 1746 | From Ohio | Registered: Aug 2014
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