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.
Posted by hiker53 (Member # 6046) on :
Mine is Eustachian tube dysfunction leading to high ear pressure and also I have balance issues.
Everyone is so different with their initial Lyme symptoms and the ones that linger.
Posted by Lymetoo (Member # 743) on :
Probably everything can be traced to LD.
I still deal with A-Fib, muscle and joint pain, insomnia if I have restless legs or I eat salicylates.
oh yeah... FOOD INTOLERANCES.
MCAS .. which is a REAL mess.
Sleep apnea .. CPAP works great, but I still have to nap nearly every day.
No telling what I failed to mention. LOL.
Posted by daisys (Member # 11802) on :
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.
Posted by MannaMe (Member # 33330) on :
For Hubby, it would be muscle aches.
Posted by Bartenderbonnie (Member # 49177) on :
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. 💚
Posted by Ann-Ohio (Member # 44364) on :
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!
Posted by daisys (Member # 11802) on :
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.
Posted by Ann-Ohio (Member # 44364) on :
![[Frown]](frown.gif)