posted
Okay so ive noticed in my time on various boards that most people with lyme get diagnosed with fibro...
are there lymies out there that DONT have fibro??
So far i only have like 1 trigger point...not really fibro at all- and maybe i should be thrilled but doesn't that mean i would get misdiagnosed as having something else like MS or ALS??
4 mths ago there were no lesions on my MRI- i have yet to do an EMG or spinal MRI.
Does anyone NOT have fibro symptoms with their lyme??
Posts: 116 | From Texas | Registered: Dec 2009
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posted
Hubby's primary symptoms have always been G.I. and neuro. For the first 8 years he had very little pain. Unfortunately that has changed recently -- the 3rd round on Levaquin and then the Factive made him ache all over -- especially tendons and ligaments. He had an IV Reclast infusion for osteoporosis and that really made things much worse as far as muscle aches.
Can't tell at this point if his change in meds means he is hitting the infections in places it has not been hit before or if he just has overall body inflammation which has never been a problem in the past.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I did have muscle pain/joint pain, but that appears gone.
The remaining main symptom continues to be this off balance/woozy thing.
Some mild neuro stuff also remains- shooting nerve pains, numbness- all fairly mild and liveable.
My balance stuff had one doctor thinking MS. Other misdiagnoses were Meneire's Disease and Migraine Associated Vertigo- all caused by "something else" according to my doctor.
That "something else" being inflammation of the inner ear/cranial nerves from Lyme and Bartonella.
Posts: 819 | From East Coast | Registered: Apr 2009
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posted
No, no fibro symptoms here at all. The Rheumy I saw prior to diagnosis told me he did not think I had fibro or an auto-immune problem.
My symptoms are neuro, neuro, neuro. Also told no MS. My spinal tap and EMG were normal. My MRI showed some hypersensitivies in the deep white matter, which were written off to my age (44 at the time) or possible past mygraines (never ever had a migraine that I know of). Could it be from the Lyme, ya think??? grrr.
I have never had a SPECT, would almost hate to for fear of the results.
I am thankful, at this point not to be having the joint pain and trigger point pain. If that was all on top of the laundry list of neuro issues, I don't think I could buck it any longer. The neuro stuff is a full time battle as it is. Ugh.
TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
My daughter and I don't have fibro symptoms. She has neuro symptoms and I had mild knee pain, shortness of breath, and muscle twitching.
Posts: 984 | From US | Registered: Dec 2007
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posted
I was tested for fibro before I was diagnosed with Lyme, and the doctor said I had "some" symptoms but was just "borderline" fibro (meaning, not really). The areas she pressed didn't hurt in particular, maybe were somewhat sensitive. I do have aches and pains on occasion, like roaming joint pain and stiffness in the morning and pain in my heels, but I can attribute all those to Lyme rather than fibro.
Posts: 39 | From Colorado | Registered: Dec 2009
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posted
thank you everyone seems mine is mostly neuro too; i'm glad i'm not alone! I had an MRI 4 mths ago but nothing showed- will be scheduling for emg too. it sucks having neuro problems! my rheumy told me the same - no auto immune or fibro problem- ticssuck how long have you been sick?
Posts: 116 | From Texas | Registered: Dec 2009
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posted
No Fibro issues for me. Just the 'lyme shrug' which is the pain in neck/shoulders. I am dealing with fatigue and brain fog symptoms.
Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Fibro and upperback muscle pain type symptoms are mostly related to toxin overload...it is not just lyme. Detox is the key...this is what those on the Allergie Immune therapy are working on.
Removing chemicals and plastics along with the viruses and bacteria are key. Our immune systems are overloaded and cannot deal with the lyme as we were designed to do! Gotta clear the body so your immune system can function.
See the recent Dr. Mercola article on the new study...over 250 chemicals and plastics found in newborns! This is what we are really dealing with!
posted
I do have all of the tender points, including muscle and joint pain, so I think I have more of the lyme arthritis and my husband has more of the nuero lyme.
We both tested positive IGG and IGM, but we have completely different symptoms.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
somebody told me there is no such thing as fibro just lyme. is that right?
what about this lyrica?
oh i have all the points plus some...my muscles stay so sore i don't even like to be touched.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Me either. No pain at all. Terrible confusion, derealization, vision problems, twtiching, blah, blah, blah. It happens without pain. Makes a person wonder about the diagnosis. I thought I was just crazy for a while.
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
No fibro symptoms at all.
Posts: 1834 | From US | Registered: Oct 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
This is very surprising to me. I guess I just assumed that everyone with LD had pain. Wow! Very interesting!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
This is why Lyme is really an unbelievable diagnosis in the medical community. I stil don't know what to believe. Basically you can replace any one of 10,000 diseases and say I have Lyme because it has a list of symptoms 10 miles long. Can you really blame medical professionals at times for not believing when you think of the dynamics?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I was just about to ask whether the difference between those with and without fibro sx indicates different Lyme strains when I saw lymeparfait's comment about toxin load possibly causing fibro symptoms.
Do you have any more info on that possible connection?
Do you know if there have been folks who have detoxed such that fibro symptoms went down, who did not do bacteriocidal treatment at the same time?
My fibro symptoms went down to just about zero upon starting an antibiotic, so I assumed from that experience that the bacteria caused the fibro sx.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
wow- boy did i get a response on this topic! funny cause i didn't get a peep out of another forum.
Anyway, i'm pretty sure i have toxin overload and i don't have the fibro sooooo....maybe fibro is candidia overgrowth?? lol. i have NO clue
lightparfait how does one detox plastics anyway? there's something i probably have a ton of.
Posts: 116 | From Texas | Registered: Dec 2009
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posted
A few months back when I first saw my llmd, I had fibro symptoms. I had no idea they were even there until he started pressing on certain areas and zowie!
I had definitely been achy and having pains but didn't think fibro until every single point he pushed nearly sent me off the table.
Now when he checks these points, no pain anymore so I think treatment is helping.
Posts: 423 | From Upstate NY | Registered: May 2009
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