posted
I'm trying to find out if there are certain symptoms that are inherently more stubborn than others.
Off all the symptoms I have (mostly neuro) the most persistent ones have been numbness and dizzyness.
Other symptoms, such as foggyness, headaches, ringing, muscle pains, hort term memory loss, etc will come and go on a daily basis.
But the dizzyness and numbness are there EVERY day since I started treatment for Lyme 6 months ago.
What are your most stubborn symptoms and how long do they last?
I'm also curious of those who report stubborn joint/muscle related symptoms suffer mostly from arthritic/FM Lyme while those who report stubborn neuro related symptoms suffer mostly from neuro Lyme?
As for myself, I'm a neuro Lymie.
Michael
[This message has been edited by cmichaelo (edited 10 January 2005).]
posted
MY most stubborn symptoms also include dizziness/light-headedness, IBS, and mainly vision disturbances. I don't know how long they are going to last but they are not off and on; they are all day every day. The vision combined with the dizziness really is a doozy. Wish I had some solutions...
Sara
Posts: 160 | From Frederick, Maryland | Registered: Nov 2004
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
You ought to see my knees and one elbow( they don't hurt but I think the damage is permanent)
worst one is burning feet. It's been years and it sloooooowly is going away. Now I can ignore it most of the time and it doesn't bother me much.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have had the ringing in the ears or high pitch sound for years off and on.
The last 3 years, it has been the weakness. I have great difficulty holding my body upright, sitting upright, breathing, bending over to pick something up, getting dressed, etc.
It comes and goes but mostly stays.
Multitasking and multimovement has also been a major problem the past 3 years.
From the 80's until now, I noticed that stress made the symptoms worse or the symptoms caused stress. Now, I know it is stress that make the symptoms worse.
[This message has been edited by kam (edited 10 January 2005).]
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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My longest and worst symptoms are the pain and burning in the knees and feet. Next is the muscle pain. I was told it would get better. I am trying to be optimistic. It has been a struggle but I am still hanging in there.
I thank God for the present that I got on Christmas. It was the best I had felt in a very long time. So I guess there is some hope.
Maria
Posts: 164 | From Rising Sun, MD, USA | Registered: Apr 2004
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Loribelle
Frequent Contributor (1K+ posts)
Member # 6293
posted
by far that would be connective tissue damage.
Posts: 1149 | From southeast iowa | Registered: Sep 2004
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posted
I would say that my daughters longest lasting symptom is ankle pain. That was her first symptom, years before she was diagnosed but, after the tick/bulls eye rash. And whenever she has a set back, it is the first thing to come back.
Posts: 70 | Registered: Nov 2001
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
orthostatic hypotension
( ofw hich includes dizzyiness, vertigo, head shoulder neck pain and pressure and many more symtpoms)
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
cmiachaelo, The same symptoms as you (neuro ones) My arthritis dissappeared more than a year a go.
Posts: 49 | From greenacres,Florida,USA | Registered: Nov 2004
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posted
I'm curious of those who report stubborn joint/muscle related symptoms suffer mostly from arthritic/FM Lyme while those who report stubborn neuro related symptoms suffer mostly from neuro Lyme?
As for myself, I'm a neuro Lymie.
Michael
[This message has been edited by cmichaelo (edited 10 January 2005).]
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Joint problems, particularly the knee. It's not officially arthritis, in that I have no signs of arthritis.
About 18 months after the bit and rash, my knee became swollen and was a problem on and off throughout my adolescence. It became less of a problem, but 16 years later, I am still somewhat limited in my use of the knee.
I only started Lyme treatment 8 months ago though.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Head and neck pain has been the most stubborn, from my very first symptoms 11 years ago to now.
posted
My longest-lasting symptom is the tension and pain in neck and head, caused by sitting. When I sit, or prop my head up in bed, the symptoms all over my body get worse. My feet begin to burn. My body tingles and I feel like I'm getting numb all over.
Posts: 136 | From Poughkeepsie, New York | Registered: Jul 2004
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posted
Hi Michael, I am a neuro Lymie too. Most of my pain has gone. My remaining symptoms after 6 years so far have been insomnia, tinnitus, mental confusion and elevated heart rate. All these would go away after IV Rocephen only to return again so I have given up with the IV abx. How many times can I endure a PICC line anyway.
Best wishes to all,
DawnE
Posts: 158 | From Great Neck, New York | Registered: Sep 2002
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posted
Hi Michael, I am a neuro Lymie too. Most of my pain has gone. My remaining symptoms after 6 years so far have been insomnia, tinnitus, mental confusion and elevated heart rate. All these would go away after IV Rocephen only to return again so I have given up with the IV abx. How many times can I endure a PICC line anyway.
Best wishes to all,
DawnE
Posts: 158 | From Great Neck, New York | Registered: Sep 2002
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lymiecanuck
Unregistered
posted
Hi,
Most prominent symptoms are nerve pain, tingling, and gi trouble, where my nerves are affected there too. Burning as been huge but eases off.
posted
Fatigue, GI problems and depression. Pain went away after 14 months of antibiotics. Off the antibiotics as doctor said I was "toxic".
Posts: 75 | From NC | Registered: Dec 2004
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Had muscle pain, and other minor symptoms for over 20 years. Four years ago the ringing in the ears started along with all the other symptoms. That is when I was diagnosed with Lyme and started on antibiotics. Now the only remaining symptom is minor joint pain mainly in wrist and right knee. Don't need pain killers, just occasional stabbing pain that will go away for weeks and then come back for a hour or day, and then go away again. The longest time I had no symptoms was several months. Still on antibiotics, but low dose.
posted
Thumping in my left ear and pain in front of & in my left ear. This was my first Lyme Symptom. At first it was more in my jaw and I thought I had slept funny. It got worse and worse. When I went off abx for 2 days it got totally out of control. Now after 6 months it is getting better but I do feel it at least a little each day. I gauge my progress by this symptom. h&s
Posts: 956 | From MA | Registered: Nov 2004
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posted
1.Excessive unrefreshing sleep 2.Excessive daytime sleepiness (EDD) (on that one you can tell p;eople "I have EDD". I like confusing people) Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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posted
Light sensitivity is the first consistent symptom that I remember getting and still have.
After starting treatment, I would say light sensitivity and brain fog.
Posts: 187 | From Washington, DC | Registered: Dec 2004
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cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
Constant ringing in my right ear.....24/7. Just wish I could change the tone once and awhile for some variation.....
Brain fog and fatigue still rank up there but they are starting to vary a bit more. As my treatment is working, I find I have more energy at times. The more energy I have the busier I try to be, and actually the foggier I get because I'm trying to multitask, which my brain is just not ready for....Michael, I'm a neurolymie.... cootiegirl
[This message has been edited by cootiegirl (edited 12 January 2005).]
Posts: 1728 | From New York State | Registered: Oct 2002
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
There are so many now that I'm considering compiling the "data" and make some sort of table from it.
One thing I wish you all would do, and I know this is a totally unreasonable request, is to edit your responses to indicate which type of Lyme you have.
And to be a bit crude about it (and to make it easier for me to make the table), I'm gonna define the following three types of Lyme:
1. Neuro related 2. Arthritic/muscle related 3. Skin related
Please indicate those types of Lyme that mainly describe your symptoms.
posted
This is my first time to post. Where would be best place for me to start posting some questions I have?
Posts: 5 | From Oklahoma | Registered: Jan 2005
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posted
I started out with neuro my longest symptoms are constan unrelenting headache and no short term memory. I got lost 2 blocks from my house a while back. Also make numbers backwards.
Am now starting to add to this a constant lower back pain that nothing even begins to touch.
Posts: 53 | From Nct. Ohio | Registered: Jun 2004
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posted
all of the neruo symptoms, ringing in the ears constanly, memory, tingling and burning all over esp in teeth, down my spine into my legs and feet, joint pain not so bad, this is after 20 years since 1986, have no hope that this will go away?
Posts: 65 | From Verona, nj, us | Registered: Sep 2001
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posted
Chest pain that comes and goes, numbness and tingling in fingers and toes, knee pain that comes and goes, Floaters in my eyes that are a constant symptom, eyes ringing (have this for 4-5 years before being diagnosised.) Fatigue, short term memory loss, I used to get dizzy bad especially motion sickness in the last 6 months that has seemed to pass. Posts: 649 | From United States | Registered: Dec 2003
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posted
Mine is definately SKIN lyme (and bart) but other symptoms that I had that left are :
facial and muscle twitching, insomnia, irregular heartbeats, fatigue, hair falling out, joint pain, stabbing electric pain that would migrate. But by far and away the skin problems that I have had are slowly going away but are definately the worst for me. Pattiecake
posted
Neuro lyme in my case although I do get pain in muscles and joints.
Symptoms that are hanging on after 20 mos of oral abx are fatigue, brain fog/overwhelmed easily, mcs, orthostatic intolerance, emotional lability, pain, blurry vision.
No coinfection diagnosis to date.
These have all improved and continue to improve with treatment, but I still can't work, exercise and do a lot of normal activities because of these symptoms.
Posts: 925 | From California | Registered: Sep 2004
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I was an arthritis person,now I am neurological I guess...
pressure behind the eyeballs, facial pain on the jawline, cheekbones and eyebrow line. (It ius in the same location where I felt pain when I was recovering from Bell's Palsy}
Rib pain (if touched only) under my arms, and under breasts and the back of the ribs. Other than these I feel pretty good!
Does anyone share these symtoms?
Meem
Posts: 66 | From North Potomac, Maryland | Registered: Dec 2004
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I was an arthritis person,now I am neurological I guess...
pressure behind the eyeballs, facial pain on the jawline, cheekbones and eyebrow line. (It is in the same location where I felt pain when I was recovering from Bell's Palsy)
Rib pain (if touched only) under my arms, and under breasts and the back of the ribs. Other than these I feel pretty good!
Does anyone share these symtoms?
Meem
Posts: 66 | From North Potomac, Maryland | Registered: Dec 2004
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
HEADACHES FOR THREE YEARS STRAIGHT.
NOW I HAVE CHRONIC PAIN EVERYWHERE ESPECIALLY NECK
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Fantastic question...here's why...I am new to the Lyme "club". I am still dealing with Drs. that are making me 2nd-guess what i think to be Lyme. People such as myself that are cruising LymeNet, looking for help/confirmation on these scary symptoms, will be assured that they aren't alone, and aren't "crazy".
Unfortunately, my WB is Neg, but my screen (assuming Elisa) was positive @ 1.57 reading.
I have gone through Burrescano's (sp?) list of symptoms and have had ~30+ of them. I think I am 50% Arthritic/Muscular and 50% Neuro....facial skin will redden occasionally...like rosatia (sp?)
Worst:
Spinal pain (Arthritis) - Thoracic region (but can be entire) Vision - headaches in PM from staring into PC @ work. (improves when wearing glasses vs contacts). Nerve/Muscle pain/damage left elbow **Heel pain - left foot One I haven't seen yet in other replies: Testicular ache (occasionally).
Glad you all are out there!
Bill
Posts: 80 | From ATLantic Seaboard | Registered: Aug 2005
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I have had the Rib pain..again left sided. This, along with the heel pain, is what makes me believe that I have a Lyme-type of infection. I've had the rib pain once, and heel pain twice.
Can someone confirm that these two symptoms very unique to Lyme? I have never heard of any other diseases that could cause those symptoms to come, go, and return again. I would be interested in seeing if those could be considered a "Red Flag" of sorts, for Lyme (at least "self") diagnosis.
Posts: 80 | From ATLantic Seaboard | Registered: Aug 2005
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Yes I have both heel and rib pain. I also have what was diagnosed as Achilles Tendonitis. My other lingering pain is facial on the jawline, cheekbone and eyebrow line. Sounds weird I know. Now I think it may all be related to Lyme.
meem
Posts: 66 | From North Potomac, Maryland | Registered: Dec 2004
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quote:Originally posted by Meemer: Yes I have both heel and rib pain. I also have what was diagnosed as Achilles Tendonitis. My other lingering pain is facial on the jawline, cheekbone and eyebrow line. Sounds weird I know. Now I think it may all be related to Lyme.
meem
I don't have the heel and rib pain.
Instead I have pain in upper/rear left hip area as well as the left calf (feels a little bit like a sore tendon, though higher up.)
These pains come and go too. The pains are particularly pronounced when I'm taking Minocycline.
posted
Great thread. I'm living proof that neuro symptoms (migraine, seizure, head presure, ringing ears, visual disturbances, loss of balance, cognitive deficits, various forms of neuropathy) and arthritic symptoms (severe joint inflammation) can coexist and be equally severe in the same patient.
What I have found, though, is that as pain (joint, muscle and nerve) grows in intensity, fatigue and brain fog tend to recede - not that you aren't still experiencing them, but the effect of the pain is to cast everything else in the background.
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
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