Head pain and lymes

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littlehutton
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Date Joined Aug 2010
Total Posts : 96
   Posted 9/5/2010 3:35 AM (GMT -6)   
Hi all

I've heard many on these boards refer to having severe headaches and head pain with lymes, I was just curious to know more detail about what others experience with this particular experience.

For me, I have a whole range of different types of pain in my head, sometimes its just a squeezing pressure type pain around the sides of my head, it sometimes feels like I have a band around my head. I get a lot of sore spots all over and sometimes it feels like my head has been cut or grazed. Does anyone else experience this? It moves around my head on a daily basis, and recently when my eyes started playing up, I get a dull ache in my forehead and eyebrows! Sometimes hurts to keep eyes open and feels like constant pressure. I pretty much feel like ive been in a car crash every day.

I have not yet been officially diagnosed with lyme, but wondered if these sounded like lyme symptoms. They certainly do not sound like MS to me, which is something else I am being investigated for.

There is also one other symptom which ive also heard is extremely common in lyme, which is bone cracking, whenever I get dressed and lift my arms my shoulders and neck crack constantly, my legs crack when I walk or stand up, my back cracks a little when I bend, and my muscle tone seems to have really reduced, like they are wasting away! Any input would be appreciated,

Best wishes

Ruth

littlehutton
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Date Joined Aug 2010
Total Posts : 96
   Posted 9/5/2010 3:54 AM (GMT -6)   
By the way also meant to ask, do hot baths effect anyones symptoms?

Many thanks

springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 9/5/2010 8:14 AM (GMT -6)   
I had a headache everyday for 4 years and never had headaches in my life. It was always different, from a stabbing pain in the top of my head, to a pain in the back of my head to pressure on my temples and a bandlike feeling. I have been in treatment for a year and a half and the headaches are almost gone, have one here and there but never for a whole day adn usually now advil will help, as it never did before. I also have blurry vision adn eye pain. I do have lesions on my brain from the lyme. I have found that magnesium has helped my headaches. I am sure the antibiotics have helped too. Also when I detox, take epsom salt bath and drink lots of lemon water, it helps. I also had lot of stiffness and creaks and cracks and PAIN in many many joints which has also subsided. Best of luck to you.
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.
THERE ARE ROUGH DAYS, TOUGH DAYS BUT ALSO GOOD DAYS. MY BOYS GET ME THROUGH THE BAD AND I SO ENJOY THE GOOD DAYS WITH THEM!

Traveler
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Date Joined May 2007
Total Posts : 35853
   Posted 9/5/2010 9:00 AM (GMT -6)   
HI Littlehutton!
Yes, those symptoms definitely sound like they could be from a tick-borne infection. I have had all of the different types of pain in my head that you and Springsjean have described - all due to tick-borne infections. I also have had the bone cracking as well.

If you are referring to the detox bathes, they help me a lot. I did however, have to build up to taking them. At first they would give me a terrible migraine, after only just ten minutes in a detox bath, but I backed off & was was able to work up to a full 20 minutes in the bath and being able to take them on a regular basis.

I hope this helps some.
Trav
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

mainegirl
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Date Joined Aug 2010
Total Posts : 61
   Posted 9/5/2010 10:54 AM (GMT -6)   
Hi, ditto to everything that was said. Actually headache was 1 of my first symptom just wasn't diagonsed at that time. I thought I had a brain tumor or something it was the worst headache of my life.

I now I get migraines alot. I do have encphelitsis of the brain do to lyme.
I also have muscle wasting. I can't bend or do leg exercises without cracks, I also have degenterive back disease. but yes I have the things u have.

prayers for u mainegirl/marlene

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 9/5/2010 3:59 PM (GMT -6)   
Headaches and migraines are a very common symptom of Lyme disease. I've never heard of bone cracking as a symptom of Lyme, but I wouldn't rule anything out - the list of potential symptoms is endless! The best thing you can do for yourself is to visit some doctors, rule out other illnesses, and talk to an LLMD.

Hope you feel better.

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 9/6/2010 2:30 AM (GMT -6)   
Hi All

Thank you for the replies and advice!

Seems that headaches are a common issue amongst Lymies! The bone cracking is weird, even when I was tossing and turning in bed last night, my shoulders and back were cracking!

I was curious to know if anyone has more pain or sensation on one side of their body, I have sensations and pain which crop up on both sides, but predominately it mainly effects my left side the most. I hear this is common in MS however I get the impression that in Lyme it tends to be wide spread pain all over, although I know that everyone is different.

I seem to be itching a lot also, not sure if this is a Lymes symptom, the worst place for itching is my jaw line, neck and head!

I hear that a lot of people can struggle at times with walking, and can even loose feeling in their legs altogether, I've had various leg symptoms, sometimes they are really stiff and cramp like, other times i feel numb from the waist down but can still walk, most of the time they just feel really weak, then I usually get the jelly legs, at which point I have to sit or lay down.

Though I think the worst symptom for me at the moment is burning pain, I've heard a few others mention it, but was wondering, has anyone had the burning skin pain (like severe sunburn without redness!) all over their body all at once! I've had this often, especially during the night, have woken up and felt as if im under a really hot sunbed! Even inside my ears I get the burning pain!!! This really freaks me out!

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 9/6/2010 8:17 AM (GMT -6)   
I have been told the burning pain is neuropathy. I only had it on one side of my face. Sitting on front of a fan really helped me. Have you been tested for herpes virus? Since being on neurontin and valtrex, the burning pain in totally gone.
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.
THERE ARE ROUGH DAYS, TOUGH DAYS BUT ALSO GOOD DAYS. MY BOYS GET ME THROUGH THE BAD AND I SO ENJOY THE GOOD DAYS WITH THEM!

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 9/6/2010 8:32 AM (GMT -6)   
Littlehutton,

The pain has remained worse in my left side for the three years I've been sick. My symptoms because with very painful bloating, then pain in my left upper quadrant (ribs under breast), then started to spread throughout my body...but my left side still hurts the worst on bad days.

I have a lot of leg pain, too, and struggle to walk, mostly in the mornings or after I wake up from a nap. There's something about sleep that seems to "reset" my pain, regardless of whether I slept for an hour or ten.

rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 9/15/2010 7:02 PM (GMT -6)   
Mainegirl
I was wondering how do they diagnose encephalitis of the brain? thanks lisa

Traveler
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Date Joined May 2007
Total Posts : 35853
   Posted 9/15/2010 7:22 PM (GMT -6)   
Not to scare you, and I am definitely NOT a doctor, but what you are describing sure sounds like Neurological Lyme.
I'm sorry, I don't remember - are you seeing a LLMD?
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 9/16/2010 6:07 AM (GMT -6)   
Hi Traveler

No I have not yet seen a LLMD, I have had the basic Lyme blood test twice through my family Doctor but was negative both times. I have been trying to get diagnosed for 6 months now, I have an appointment with a LLMD in 3 weeks, at last. There are not many LLMD's in the UK, I think about 5 in the whole country! So I have struggled to find one.

I will be getting tested for Lyme again via the Western Blot and also co-infections, though I understand I could possibly be diagnosed under a clinical basis, even if the tests are negative.

You have to pay for treatment privately in the UK, because our health system just do not recognize Lyme, even if you have a positive test and a bulls eye they will only give you 3 weeks worth of Doxy and thats it! It's a complete scandal!

Missy Joy
Regular Member


Date Joined Sep 2010
Total Posts : 53
   Posted 9/16/2010 12:52 PM (GMT -6)   
I also have the headaches that you all described, especially the pain on the top of my head and around like a band. The Left side does hurt more that anywhere else, and my scalp is sore to the touch. Strangely, my left ankle hurts often too.

Does anyone know why the Left side commonly hurts more that the Right? I have a doctors appointment with my LLMD tomorrow, and I plan to ask about that.

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 9/16/2010 1:38 PM (GMT -6)   
Hi Missy Joy

Thanks for your response, it seems these kind of headaches are very common amongst us, every time I describe them to my doctor, he looks at me like I'm crazy, then blames them on stress! I don't think so!

The one sided issue is strange, I would be interested to hear what your LLMD has to say about it, and what causes it to mainly effect one side of the body.

Good luck at your appointment tomorrow, wishing you well.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 9/16/2010 2:49 PM (GMT -6)   
I don't believe it's terribly common for 'left-sided issues', although I have noticed that here on HW we seem to go through these periods where a small group will have most of their symptoms occur on the left side. As a matter of fact, when I first joined this forum, I actually got scared that I might not have found my answer to all of my issues because it was during one of those periods where there were a lot of people with left-sided issues were here!!!
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 9/16/2010 11:11 PM (GMT -6)   
Wow...interesting discussion on left-sided issues! It never occurred to me that this would be a theme. I don't know if you've seen a neurologist about your headaches - I've had migraines since I was a teenager, which occur on one side of the head or the other and are usually very disabling. Despite all the head pain I've experienced in my life, it can still be really scary to me - it just never seems right that a "safe," normal migraine can cause SO much pain!

Does your scalp hurt when you just touch it, or move your hair around, or scratch? I've noticed my skin has gotten really bad since I've been sick with Lyme. I have eczema on my hands and face and more recently gotten seborrhea on my scalp, which can cause itching and bleeding (scabs). It's quite a nuisance. Actually a friend of mine was doing my hair one night and asked if I had a birthmark on my scalp because there was a huge patch of red, raised, dry skin...seborrhea.

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 9/17/2010 2:27 AM (GMT -6)   
Hi Madrivergirl30

Yes my head does hurt when I touch it, I also get what I would describe as nerve pain in my head, It's so sore at times it feels like I have been cut or grazed.

I remember recently going out to a restaurant and I had this really strange and sore sensation in the back of my head, it honestly felt like I had an axe sticking out of the back of my head, really sore and like a pulling sensation, the scariest thing I have encountered yet!

I have not had any skin issues, in fact surprisingly my skin seems to be better and smoother than it has ever been, almost baby soft, its the only part of me which seems to not have been effected in a bad way.

hair loss is becoming an issue though, my hair seems so thin, and when I wash it loads comes out, I'm surprised I have any left at all!

MarriedtoLymeinNJ
Regular Member


Date Joined Sep 2007
Total Posts : 273
   Posted 9/17/2010 7:38 AM (GMT -6)   
Littlehutton, ITA with everyone,m sadly it does seem like a lot of your symptoms can be neuro-Lyme related.

My whole family has late stage so I have seen just about every symptom possible.

One of the biggest symptoms DD had was skin sensitivity/scalp pain. I couldn't even begin to brush her hair w/o her begin in pain.
DS would get and still gets some crazy headaches. He recently said that they felt like they were starting in the center of his brain and spreading out.

And last bit of info- I think the left/right side is pretty common too- My DH is much weaker/more pain on his left side. For me, its pretty consistent down my right side.

You gotta say one thing about Lyme- its never boring!(ugh.)
Chris: Diagnosed Lyme, Chronic Mono
Married to Lyme in NJ aka Gary: Lyme, Bartonella
Mom to Scott: Lyme, Babesia, Bartonella
Mom to Caitlyn: Lyme, Bartonella
My Blog: http://faerywings.wordpress.com/

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 9/17/2010 12:18 PM (GMT -6)   
Oh Gosh

does anyone ever recover from this hideous disease!!!!!

Kodak
Regular Member


Date Joined May 2010
Total Posts : 74
   Posted 9/18/2010 5:35 PM (GMT -6)   
I get the headaches too. Feels like I have a wet cloth on my head, like a heaviness sometimes.
Then I get the band around the head and it feels like my forehead and eyebrows are swollen. Very strange.
THen I also get the pressure. Like my head is filling up with liquid and cant hold any more. Its hard to
keep my eyes open with this and I find that napping helps.

Other symptoms I get, like the twitching and numness are usually on my left side.

Kodak

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 9/19/2010 12:04 AM (GMT -6)   
I don't know what causes one person to hurt in one particular place and another person to hurt in a different place. My left side rib area (front, side, around to the back) felt like I had an axe or knife sticking it in. It was a very sharp pain, but also felt bruised, sore, tender, and ultra-sensitive. It makes sense to me that if Lyme could cause pain in one area of the body, it could cause it in another ( one's head or scalp); I just wonder WHY the head or scalp... I would assume it has to do with inflammation. Sometimes my left side hurts so badly, it literally feels like it's so inflamed that my bones and organs are being crunched all together and there isn't enough room inside my body. I can't lay or sleep on that side because it's such a horrible sensation.

I'm sure you all know that headaches and migraines are among the top, most common, symptoms of Lyme disease - some people have them for years and years before developing other symptoms...but this sounds different, like it's the nerves on your scalp that are hurting you. Maybe this is connected to the reason for why you're experiencing some hair loss, too?

Traveler
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Date Joined May 2007
Total Posts : 35853
   Posted 9/19/2010 9:46 AM (GMT -6)   
***I am not a doctor in any way, shape, or form. I have just lived with Lyme & buddies for far too long****
Littlehutton,
Yes, people recover from this. The reason it is hard to find those that have recovered is because they usually just want to get back to living their lives. Over the years that I have been active here on this site, I have seen quite a few people "come & go". I'm not so sure that I will stick around in Lyme world once I am healed still holding out hope!!) Although Deejavu has stayed in contact with this forum & she has been symptom free for 5 years now - I think.

On another note, Littlehutton, I get those exact same headaches!! The whole axe or a big ole butcher knife sticking-out-of-my-head would-you-please-check-and-make-sure-that-one-really-isn't-there? headaches! It seems that all practitioners are surprised when I explain that!! My skin has also become much softer, mainly because I am not outside all of the time any more for many reasons - all of them are from Lyme & co - and because of the detox bathes & skin brushing.


Madriver,
What you are experiencing is most likely connective tissue pain. It's not always due to inflammation. Lyme is funny that way, it can cause lots of pain without inflammation. It most likely is nerve pain, which will occur when you have Nuero Lyme. This is the kind of pain that I have to use pain meds for, as they can get pretty intense for me - to the point that it can prevent me from walking for days at a time.
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/19/2010 1:24 PM (GMT -6)   
madrivergirl,

I just wanted to give you something else to look into regarding your rib pain. Many of us deal with costochondritis and it it very painful. You may want to bring it up to your doctor on your next visit. I hope you start feeling better soon.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis
Prescription Meds: Cymbalta, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, CMK, Folic Acid, Fish Oil, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement


Co-Moderator Lyme Disease Forum

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 9/20/2010 3:01 AM (GMT -6)   
CanjunGirl,

Yes, I've already been "diagnosed" with costochondritis...the doctors told me that before anyone knew I had Lyme. It was very painful, but I think it may be gone because I haven't had any kind of chest/bone pain in a while...

Trav,

I think the rib pain is a mixture of both inflammation and nerve pain. My test results have consistently shown inflammation and my LLMD says my inflammation is out of control and is top priority, along with a healthy sleep schedule (I can't sleep at night - it's 5:00 a.m. and I'm not even near falling asleep). He can't even touch the back or front of my entire torso with a stethoscope, even lightly...and I am often just as sensitive in most other areas of my body... I also seemed to have lost the reflexes in my knees - I remember looking it up after it happened the first time but now have no recollection what that was from or if it's related to inflammation. I know it's a common symptom of Lyme patients.

I've been having a very annoying new problem this past week. My cheeks seemed to be somewhat swollen, which has caused the inside of my cheeks to rub against my teeth...which makes them more swollen and exacerbates the problem... I looked in the mirror and there are raised white lines on each side of the inside of my cheeks, and even a small ulcer on each side. Last night I looked online just to make sure it wasn't anything serious...there doesn't seem to be a "cure" to make it stop happening, and I don't know why it is. It actually happened another time, a couple of months ago, but didn't last this long. My mouth is burning, very sore, and hot inside. I tried some rolled up gauze before I went to bed last night, but I ended up pulling it out. Ugh...

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 9/20/2010 5:11 AM (GMT -6)   
Trav,

Thanks for sharing your experience with the axe in the head type experience, I felt a bit crazy mentioning this on here, but it was the the strangest thing I have encountered. I did mention it to my doctor (not LLMD) and he thought I was losing the plot!!!!!

I'm pleased to hear that people do recover, it's a shame we don't more about these stories, as it is so encouraging. Some days I feel like I will never be the same again which can be quite upsetting. Though in some ways I feel this whole sorry affair has made me a much better and stronger person. So for that I am grateful.

I was just wondering last night more about having a herx. When I do finally start treatment, how long usually does it take to start having a herx, and how long can a herx last. Im really worried about this, as I feel pretty awful already, and the thought of getting worse is scary. Also how long do people go through the herx stage, is it for a few months or years?

many thanks
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