Tag Archives: symptoms of lyme disease

Health Update Sept/Oct 2017

12 Oct

Whew, finally getting this written! I’m gonna give myself a little plug here before I get started.

If you want more consistent updates on how I’m doing, follow me over on Instagram! I’m on there regularly, sharing how I’m doing with dosage increases, doctor visits and whatever else hits me as I fight to get better! (plus, there’s super cute puppy pictures too)

fightinglymemigraines

Overall Health: While fatigue has been less INTENSE, it is still very present, making it one of my main struggles of the month. Dealing with reaction to Iberogast. Not getting good/enough sleep. Bladder issues.

9-12 IV today. Brain fog but ‘compelled to DO’ today. Drove down to Bend on my own! Days away from cycle
9-14 fatigue day. Migraine kicked up. Bit of brain fog. 
9-15 worse fatigue today. Level 9 migraine in evening. 
9-19 upped Iberogast to 2 drops/day. Felt bad in afternoon and awful in evening. Migraine. Jaw. Achy. Etc. 
9-20 same reaction this aft at yest. But not quite as intense perhaps? 
9-22 putting Iberogast in warm water rather than hot tea. Seeing if this helps my reaction/detox to it. Yesterday’s fatigue was intense. Back hurt in evening
9-27 aft. sparkly vision. Severe migraine and fatigue rest of day
9-28 migraine and fatigue hit in afternoon
10-1 fatigue lingered today, able to get out though. Napped in afternoon. Migraine kept down with 2 clonidine. Upped Iberogast to 4drops/day in evening
10-3 IV today. Added poly mba at the end, along with glutathione. 
10-4 woke up achy and tired but had a burst of energy rest of morning. Migraine kicking in early afternoon. Severe migraine and bad fibromyalgia in evening. Rough night.
10-5 woke up rough and weak. 
10-6 woke up pretty good. Tired but ended up with a lot of energy most of the day, despite brain fog. Migraine and fibropain kicking in mid evening. Can’t seem to stop it. 

10-9 upped Iberogast to 5 drops/day
10-10 fatigue and just feeling overall awful this am. Want to get things done but just can’t…. So tired. Woke up with migraine. After a few hrs was able to get up and DO. migraine flared off and on all day. Only flared a bit in evening.

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Migraines: I have done better keeping track of these on my migraine app. Still a little wonky so I can’t use all of the feedback from it but here are a few. These have been averaging at a level 9. Aura and Prodrome are : headache, muscle stiffness and tingling in head. Triggers seem to be: body aches, interrupted sleep and lack of sleep. Top 3 symptoms are neck pain, fatigue and jaw pain. They typically start in the temples, eyes, jaw and base of skull. Most days I can get the pain down to where I can function – and get things done.

~ an ice pack has been my go-to lately. laying on it, or having it on my forehead helps so much.

 

Sleep: This has been a big struggle for me. Falling and staying asleep is so hard. I always sleep with my heating pad under my neck.

Memory/Disassociation: At times I feel like my memory is getting better but I don’t think it is. (no joke intended there, hehe) I will say that I have’t dealt with disassociation this month. Over-stimulation, yes. Frequently.

Vision: This has only happened once this month. I am so relieved about this!

Fibromyalgia: It has reached drive-me-insane level a few times this month. Augh. My joints regularly hurt – especially my elbows. And that often spreads tingles to my pinkies and ring fingers. It is just about guaranteed to happen if I’m holding something (phone, book, crochet, steering wheel etc) for a long time. (this has improved a bit from last month!) Ice, advil and light massaging help. The self-cramping that my left calf does and the ripples of pain that shoot along the bottoms of my feet still happen. But my hands aren’t self-cramping as bad although I do have to stretch my fingers out often because they just HURT.

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~Pain and anxiety go hand in hand.~ The last few days I’ve felt a restlessness to be HEALTHY, to be WHOLE. To be past this struggle. I feel as if parts of me are dying, withering away under all of this stress, physically and emotionally. I’m impatient to move on with my life. But I remind myself that my main goal needs to be to keep my eyes on Him – the One who is my Refuge and Strength. No matter what earthly trial I am in, He alone is my Salvation, my Rock. As long as I keep my eyes on Him and ask that my will ever is aligned with His, I will have lived a good and full life.

TMJ – This has been popping/hurting a lot still and I’m thinking it’s because I haven’t been to the bodywork dr in months. My teeth ache quite frequently from the stress of me clenching/grinding them at night.

Fatigue: As I said above, this is one of my main complaints from this month. The deep-seated fatigue that just aches and drags me down. I still am compelled to get up and DO things but sometimes the two opposites are at war with each other. Some mornings I am stuck on the couch but then can get up in the afternoon. I want to make a distinction – before it would be so bad that it was hard for me to stay upright in a chair, and I mean, really hard.  Now though, while it is still difficult, I rarely am struggling to stay in it rather than feeling like a cartoon where the character just melts off the seat into a puddle. So, while the fatigue is still bad, it’s not where it used to be.

Weight Loss: I have come out even this month – losing and then gaining it back. I’m a little bit frustrated but I have been less strict on my diet, so….. (by that I mean that I’ve had starch here and there)

Mood: This has improved…sort of. My inward negativity goes in waves, but it’s better than it being constant. I’m sure that being able to get things done around the house helps with this.

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IV time again – Hallelujah! Lovely nutrients with gluithione at the end. We’re also going to try a bit of poly (can’t remember the full name right now) at the end as well to see how I do with it. Was able to have a good talk with the Dr about next possible steps, with some suggestions for tests before the end of the year. Brain fog and fatigue are hitting hard today.

Bladder: This is the other main struggle this month. I can’t get back to how my digestion/bladder were a few months ago. (is it really that long ago?) Even when I was cutting out ALL processed and starch. I am waking up typically 3 times a night to go to the bathroom, even when I don’t really need to.

~I wanted to do a quick update of my progress from this time last year. I’ll try to keep it short. I still struggle with many of these same symptoms as well as have added quite a few. (oh joy). But I have more energy overall. And we’ve figured out more of what’s going on with my body to combat it!

What I’m currently taking:

1 each day of  A, B complex, Calcium, Chaste Tree Berry

2 each day of Ashwagandha, B2, Berberine, Butterbur, D3, E, Feverfew, Fibronol, Magnesium, Xiao Chai Hu Tang, Noni Fruit

3 a day St. John’s Wort

1 drop Ceanothus one day a week. 5 drops a day Iberogast (slowly upping)

on Days 15-28, 1 Horse Chestnut Extract and 2 Chaste Tree Berry

Clonidine – prescription pain pills. Averaging 2 a day

Gelsimium, Pulsatilla, Belladonna, phosphorus and one more… – tincture in water that I take when I need relief

essential oils

~Several of these I need to increase, but I’m focusing solely on the Iberogast right now.

I know this was long this month but I wanted to get it all in!

How have you been this month? Do you have any questions for me about what I’m taking/doing? Ask away!

~Laura

Health Update : June 2017

14 Jul

Hello everyone!

I pulled up my migraine app to write the stats down, all the while thinking that I haven’t been keeping very good track lately when this confirmed it : 2 attacks the past month, my average attack duration is —wait for it…… 145 hours and 35 minutes. (coughcough) so I’m gonna skip this entire section of update because it’s all faulty.

fightinglymemigraines

Overall Health: the first three weeks of June were terrible. Straight up terrible. But! I also started getting nutrient IV’s and they seem to help so much. I feel like we are starting to figure some stuff out about this poor body. The last week-odd was so much better – all my symptoms calmed down SO much. Although disassociation is still a problem when I’m out and about.

Notes : 5-26 upped xcht to 2/day . Nauseous. Exhausted. Migraine kicks up then recedes on its own. Feeling a bit snippy and lonely today. Waiting to hear back from Dr about upping ceanothus or starting fibrobol.
5-28 starting fibronol, 1/day. Haven’t heard back from Dr, decided to just do it.
5-30 fibropain has been flaring for the past few days bad. Hard time getting it to ease. Trying the white Willow forte for it instead of Advil.
6-1 appt with Dr v today. Left side feels better now. Also started cycle early this am. Pretty miserable all day. Exhausted.  Migraine kicking my butt. Off of fibronol- was causing unexplained bruising.
6-2 first IV today
6-12 migraine not staying down today. Fibropain is starting to flare in late afternoon. Hard time focusing on anything for more than a few minutes. Really wanting to start the detox, hoping to get to the produce store tomorrow so I can. Migraine flared to a 10 in evening. Debilitating. Awful. Body was a heavy weight that I couldn’t move. Tears. Fell asleep around 8pm and slept off and on till the next am.
6-14 day two of recovery. Able to do dishes this morning but exhausted and achy now
6-16 still can’t get rid of this migraine and fatigue. It’s sticking around an 8. Evenings are still rough but seem to be getting easier as they go on. Nothing seems to ease the migraines much
6-20 2nd IV today:
Potassium
B complex (5, 6 a and 12 as well)
Vit C
Calcium
Magnesium
Saline
Fighting a cold as well. Been better this past week-ish. Fibropain has diminished -except for shoots of pain. Migraines responding to treatment better. Highest an 8. Fatigue still awful

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morning dose

*It wasn’t the fibronol that was causing unexplained bruising. I have since started back up on the fibronol because the bruising is still happening. I also realized that the Ceanothus was causing some serious herxing so I am going to start taking it only one drop a week.

Sleep: Still rotating Theanine and Melatonin in order to fall asleep. Having a hard time with falling – and staying – asleep again. Especially when the fibromyalgia kicks in.

Memory/Disassociation: Like I mentioned above, I’ve noticed that disassociation kicks in when I go out in public. I suppose I could be having it here at home too but just don’t realize it. hmmm. Anyway, memory might be improving a little.

Vision: I’ve started getting ‘floater’s in my vision a bit which my dr says can be a vitamin k issue (I think this is right, it goes along with some other problems I’ve been having)

Dizziness: Thankfully, this has stayed mostly calm – but not completely

Fibromyalgia: This seems to flare for a few weeks and then calm down. Right now I’m in the  it’s-coming-back-soon stage. It definitely reached higher intensities, especially during my level-10 migraines. Advil, heat and ice seem to be the only things that help.

Fatigue: this was consistently bad the first three weeks. It eased the last week odd but has since come back with a vengeance.

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Weight Loss : Since I cut processed sugar out and reduced any starches (beginning of May) I’ve lost a total of 5 lbs. I’m excited about this because it’s been steadily – slowly- dropping and any attempts before to lose weight didn’t work. As long as I stay strict like this, I think the weight will continue to drop. (it’s funny because it’s typically 0.8lbs a week.)

Mood: I’ve been good on this and yet not… The mood swings and major struggles haven’t come back but I’ve struggled with getting frustrated at the downward swing of my heath.

Bladder: I haven’t noticed any changes in this area

 

 

~ I am trying not to worry too much about the fact that I’ve started getting level-10 migraines again. Trying. Because, honestly, it’s freaking me out.

~ It would be wonderful if I could go in regular for acupuncture and bodywork. And I really want to try the infrared sauna as well as the sensory deprivation room (because, I just couldn’t do the ‘tank’ – hello claustrophobia). There are a few other treatments that I’ve looked into that I would like to try but due to money – and insurance not covering anything I need for Lyme treatment – I just can’t. It has been a big point of frustration for me this month.

 

~I am going to start looking into getting disability which completely overwhelms me just thinking about it. If anyone has any tips or suggestions, I’d absolutely love to hear them!

~Laura

I am on Instagram where I update/share how I am doing pretty regular if you want to check it out

 

Health Update for May 2017

26 May

Happy end-of-May dear readers! I’m typing this out on my back porch with Lady laying just inside the open door and Abby running back and forth between me and the bone in the yard and OH in the living room. It’s a good evening so far.

fightinglymemigraines

 

Migraine app notes: I had 10 attack days lasting average of 68 hours. I had 2 attack free days. I took 56 clonidine ( 4 more than last month) They happened 50% of the time from 12 pm to 6 pm. Average pain is 7.5, which is pretty good. Supposedly I’m sleeping around 8 hours a night, migraine or not. ha. If only. Top 3 aura/prodrome are muscle stiffness, fatigue/achiness and weakness. Top 3 triggers are neck pain, too much activity and lack of sleep.Top 3 symptoms are neck pain, jaw pain and aches. Frequent start positions are the same, temples, jaw, eyes, base of skull. Soaking my feet has helped a lot this month

Overall Health/Treatment: Up until this past weekend the neurological pain (aka Fibromyalgia) and all was terrible and I was pretty much on the couch. I had some bursts of energy  but not until recently  did it ease enough that I felt like getting up and doing something. I struggled with anxiety/guilt a lot as well. Focused on adding in/increasing supplements to support this poor body.  The evenings are the worst, no matter what I try. I’ve been going to bed in a lot of fibro pain and migraine, just praying I’ll be able to sleep.

notes: 4-28-Migraine was worse today. Aches eased until evening- went to dog park and made dinner then they increased in my calves bad. Barely able to keep migraine down today. Nice to have some energy and the brain fog lifted but the pain’s wearing me down. Have had some muscle twitches today

4-30- today has left me bone- weary. Even the movement of my tongue hurts my jaw. The all-over aches have eased a little, but the cramps are little shivers that regularly run through the base of my feet. Bad migraine today. Wasn’t aware of what was going on around me for a while. Nap helped but body is SCREWED up. Tomorrow is going to be a day of loving on it. 

What do you find hard to tell people about your health? 

 

Health Update – April 2017

28 Apr
 It’s been a very rough month, full of reasons that I have to move, even when I’m working with no spoons. Ugh. As important as I know doctor appointments are, I admit to wishing many times that I could just stay home on my couch.
I wrote a post on pain keeping you up at night a few weeks ago, go check it out! If you want to follow me on instagram –  I do regular updates on how I’m doing and share lots of happy puppy pictures.

Health update – January 2017

31 Jan

 

Well, folks, as I’m writing this I’m fighting nausea like nobody’s business – along with a migraine, so forgive me if it doesn’t all make sense.

fightinglymemigraines

Here’s the update from my migraine app from this past month : I have had 1 attack-free day. They average at 34 1/2 hrs. I’m (supposedly) getting 8 hrs of sleep a night. 76% of them occur on a weekday. The pain average is 8, minimum a 7, maximum a 10. Fatigue/achiness, muscle stiffness and headache are the top 3 auras. Neck pain, interrupted sleep and lack of sleep are the top 3 triggers. Likely triggers are interrupted sleep, pre-cycle and neck pain. Symptoms are neck pain, jaw pain and fatigue. Frequent start positions are temples, eyes, jaw, neck and base of skull. Relief methods that seem to work are clonidine, pulsatilla, oils and food/water.

~While I love having this app, it isn’t as accurate as I’d really like. part of that problem is that one must pay close attention and then input said attention into the app. So. perhaps it’s not fully the app’s fault. (coughcough)   To compare with last month’s though, the average time has gone down, while my nightly sleep has gone up! Most are now occurring on weekdays, and average pain has gone down one level. Fatigue is still a major issue; neck pain is a consistent trigger and symptoms have stayed the same.

What’s interesting about this ‘synopsis’ is that I would have said the pain had gone up this month…. but! I will trust what I put in the app and roll with it.

Overall Health: Honestly, I’ve felt so rotten this month that it’s really started to affect my moods and productivity. The chronic pains that have flared up again are so bad that I just don’t want to move majority of the time. Heaven save me from living on the couch.

Treatment: I made the mistake of running out of several vitamins/supplements at the same time and have been paying for it….dearly. I’ve added almost all of them back in, as well as iron and feverfew. My Dr. says she has rarely seen someone as low in iron as I am. I’m also super high in fibrinogen, a protein that is essential for blood clot formation. I’ve been needing to take 3-4 clonidine a day for the migraines.

Migraines: They seem to have gotten more intense as the month has progressed. Only one hit a ’10’ though. something to be grateful for. The clonidine and natural pain killers I use haven’t been very effective. At all. Nothing has been touching these things = super fun, that.

Digestion and TMJ : Digestion has been some better. Jaw pain is about the same.

Sleep:  Aside from taking Theanine a few nights last week, I haven’t been taking anything to help me sleep. It’s so nice. I am waking up once or twice a night and am sometimes still able to get back to sleep when I wake early in the am. This is not to say that I’m waking up rested and refreshed (I was probably a pre-teen the last time that happened). I’m fighting exhaustion , and taking naps all the time.

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Memory/Brain fog:  This has been a continued struggle. I am praying that the iron i’m taking helps with blood flow and gets more oxygen to my brain, thus improving this. Fog hasn’t been too awful, but gets worse when i’m in a crowded room.

I get to add another few items to this months list:

Vision– my eyes are having a hard time focusing, even with my glasses on. it’s of course worse when I’m tired or the migraine is worse but it’s a pretty constant thing these days.

Feet/leg cramps –  these are back like crazy. i’m thankful that most of the time it’s just a matter of tenseness rather than straight up cramps but it’s still painful.

Dizziness- i’m having to remember to stand up slowly. no sudden movements.

Joint pain – like none other, people.

Nausea – Out of everything I’m adding here, this is the one that I’d ask to go away first. it’s what’s keeping me down today, when the migraine isn’t bad.

Moodiness – yes, it’s bad enough that it gets its own category. I was so glad when my moods evened out months ago that it’s frustrating this problem has resurfaced.

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I have also lost almost 5 lbs – and then promptly regained it.

Well, there it is – January’s health update! I’m not off to a very good start this year but my doctor is such an encourager, that I’m clinging to her optimism. I’ve also been going to a chiropractor for my back/hip pain and am summoning up the courage to call the dentist and make a TMJ appointment. So perhaps February will see a change.

Check out my Chronic Pain page to see all my health updates and health advice!

~Laura

 

 

 

Health Update – 12-2-16

2 Dec

Happy December friends! Thanks for stopping by SGL today, I’m so glad you’re here! Once a month, I review how I’ve been feeling – how the treatment for my Lyme Disease is going, and all the other fun things I’ve got going on.

fightinglymemigraines

November was a month of contradictions. For the majority of it, I felt really beyond awful. But when I felt good – I felt really good! There wasn’t much in between for me. I had some ‘fun’ new symptoms start/kick it up a notch and my migraines tended to last an average of 55 hours. Yep. 55 HOURS. If that’s not fun, I don’t know what fun is. Stores are still places of pure torture wrapped in spikes and crocodiles.

For a quick report from my migraine app – Migraine Buddy –  88% happened on weekdays, 12% weekends. Average pain level was 7.6 , high was 9 and low 6. My top Auras were fatigue/achiness and muscle stiffness. My top 3 triggers were neck pain, interrupted sleep, pre cycle. Top 3 symptoms were neck pain, fatigue and throbbing pain. Frequent start positions were temples, eyes, jaw and neck. Reliefs that seem to work consistently are : clonidine, oils, belladonna/pulsatilla and heat pad.

Overall Health: Much the same as October, ROUGH. Like I said, fun fun symptoms to keep me guessing. Lights and sounds started hurting bad again. Constant calf cramping (literally 24/7) along with severe random cramps no matter what I am doing. A harsh cough a few times a week (you know that deep, painful cough you get when you’re sick? yeah. that.) Daily fatigue/achiness.  Ringing in ears off and on.  Some nausea when I move. I lost a few pounds, only to promptly gain them back.

Due to the calf cramps, sleeping has been difficult. For a few weeks, I wrapped up in my cozy electric blanket most every night – it was the only way to ease the pain so I could sleep. I’ve started soaking my feet more often, hoping the epsom salts helps.

Treatment: I have backed off the garlic pills, to just one a day and have added back in the Xiao Chai Hu Tang. I started with one pill a day and have gone up to 2 a day this week to see how I do. Otherwise, I am on everything my doctor put me on last time I was there.

Migraines:  So, on one hand I feel they are getting better. On the other – 55 hours. I’ll take what I can get but aren’t they supposed to get shorter too????

Digestion and TMJ :  digestion has been touch and go – what with feeling so poorly it was hard to cook (read: pasta and french fries) and juicing pretty consistently…. I definitely digest better when I stay away from breads/pastas/etc, and drink at least 3 glasses of juice a day. (juice being kale, cucumber, celery, carrots, lemon, ginger and apple). My jaw hasn’t been good. often it’s been an indicator that pain/migraine was on its way.

Sleep: My app says I’ve been getting about 7 hours a night but I certainly don’t feel like it! I am still waking up 2-3 times a night to go to the bathroom, and sometimes can’t go back to sleep the last time. I’ve been taking a lot of long naps lately – but still am exhausted by late evening.

Memory: this might actually be improving – or at least it stopped its downward spiral. Being in Bend for a week with family and friends, I noticed I wasn’t saying ‘um’ as much, or searching for the correct word. Granted, I still did it but I was able to carry on a coherent conversation and that wasn’t the case a few months ago.

Daily Vitamins/Supplements:

Clonidine – averaging 2 a day (although many, many days these past few weeks I’ve needed 3, and sometimes 4 to get through them. ugh)

Pulsatilla and Belladonna – I’d run out of one in time to replace it before I went on vacation and then promptly ran out of the other. oy.

1 each of B complex, B2, Calcium, D3, Fish oil, Copper, Garlic (trying 2 every other day of garlic)

2 each of Magnesium, Olive Leaf Extract, Vitamin E

3 Evening Primrose Oil

6 EHB

on Days 15-28, 1 each of Horse Chestnut Extract and Chaste Tree Berry

1/2 tsp Silver nano ( 2x a day)

1 TB Apple Cider Vinegar in a glass of water in the mornings

 

That’s all I can think of. I am feeling like this Lyme Disease is kicking my butt right now, so it’s probably good timing that I’m going in to my dr. tomorrow morning to get some motivation and encouragement (yep, she’s that awesome) along with some acupuncture. I don’t know if some of this is herxing or what, but I’m done.

*on a purely fun side note, I won nanowrimo!!! i’ll tell you more what that means next week! *

~Laura

Feel free to check out my other health updates here on my Chronic Pain page!

Symptoms of my Lyme Disease

9 Aug

Here is the ‘short’ list of symptoms I’ve been dealing with the past decade odd. I pulled this from the book Why Can’t I Get Better? by Richard Horowitz M.D. – and as such, each one has the different options that can happen. Like the second symptom down, I’ve only had weight gain, not loss. But either one can be a symptom so I put them down.

symptomsoflyme

unexplained fevers, sweats, chills or flushing

unexplained weight gain or loss

fatigue, tiredness

unexplained menstrual irregularity

upset stomach

change in bowel function

chest pain or soreness

shortness of breath, cough

heart palpitations, pulse skips, heart block

joint pain or swelling

stiffness of the joints, neck or back

muscle cramps or pain

twitching of the face or other muscles

headaches

neck cracks, neck stiffness

tingling or numbness, burning or stabbing sensations

eyes/vision: double, blurry, floaters

ears/hearing: buzzing, ringing, ear pain

increased motion sickness, vertigo

light-headedness, wooziness, poor balance, difficulty walking

confusion, difficulty thinking

difficulty with concentration or reading

forgetfulness, poor short-term memory

disorientation: getting lost, going wrong places

difficulty with speech or writing

mood swings, irritability, depression

disturbed sleep: too much or too little or early awakening

 

Many of these come and go. Nausea, legs or feet cramping, mood swings, heart palpitations for example. But the majority are on a daily basis, disturbed sleep, difficulty concentrating, maintaining normal temperature and disorientation. It’s a fun thing, being in this body of mine. heh. So often, I feel like I’m looking at the world through a hazy, gauzy veil – so close to being a part of it, but not able to quite reach through and get there. At the grocery store, the coffee shop or out to dinner – there’s a shroud that makes it hard to fully connect unless I focus. And, sometimes I mean really focus. Whether it’s migraine, leg cramps, overstimulation or mentally testing how my body feels to decide if I need to take another pain pill, there’s always something there to make it that much harder to connect.

Anyway, if you realize you have several of these symptoms I URGE you to go get tested for Lyme Disease. Pay attention to what your body is doing, don’t just assume that some things are just ‘how you are’ or that everybody deals with it. If I had mentioned some of these symptoms to my Dr. years ago we might have been able to diagnose me a lot sooner.

~Laura  

 

 

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