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Sneezing With Lyme And Fibromyalgia – Ouch!

18 Jan

sickguysneezing_thumb

 

Sneezing With Lyme And Fibromyalgia – Ouch!

This is something I keep forgetting to mention, sneezing when you have Lyme disease or Fibromyalgia. I remember a time when I was healthy and felt the need to sneeze and if I couldn’t I would look at the sun to help me get it out. Now when I have the sneeze it is like “oh no!, brace yourself”.

For most people a sneeze is a relief and they feel somewhat better getting it out rather than holding it in. Some say a sneeze is like an orgasm.  But for me at least a sneeze is my enemy.

Now with being ill, having wide-spread pain and all the other symptoms going on, a sneeze brings on more pain. I sneezed earlier tonight and that triggered me to share this. When I sneeze it feels like a sledgehammer to my chest. I am not over-exaggerating, it really feels like Mike Tyson just punched me full-force in the chest.

I sneeze and first the bones in my body (like my neck) crack while in motion, then pain all over my body, then my chest has severe pain as if I had the wind knocked out of me. My lungs or the area around my lungs hurts and my whole body goes into a shock I guess which I can only describe as if I fell a few feet off a table and hit the ground on my back or chest.

I will sneeze once and say to myself “no more… no more” as another sneeze then another. I then sit hunched over in severe pain holding my chest sometimes with tear in my eyes. It takes on average about 5-10 minutes for the pain to subside. I still feel a little bruised on the inside from the earlier sneezing and it hurts my back. The pain reaches places you never knew you could feel pain.

I know this sounds weird but trust me it hurts. As I’ve said before I worked construction, cut my head open, broken bones, fell off a bridge, herniated discs, threw out my back, passed a kidney stone at work and kept working….. so I know my pain levels. It is not the worst pain but it is up there on about an 8-9 out of 10.

I was just curious if I am the only one who hates sneezing and finds it painful with Lyme/Fibro. I know there has to be others out there. It is just one more annoying thing about being chronically ill. There are so many issues I want to talk about but I always forget. Things I used to take for granted are things I miss, even things as simple as sneezing.

 

- Bryan

 

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Lyme And Fibro Flare

29 Oct

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Lyme And Fibro Flare

My body is in a tug-of-war between my Lyme disease and Fibromyalgia (FMS) both flaring up at the same time. Some say you cannot have Fibro and Lyme together but you can. I know many are misdiagnosed with Fibromyalgia and they really have Lyme disease and not Fibromyalgia so it can be confusing. You will know if you have both Fibro and Lyme since there are differences.

Doctors like to tell everyone they have Fibromyalgia if they don’t know what is wrong with them. It is a general term which basically means chronic wide spread pain. Fibromyalgia Syndrome (FMS) is used when they diagnose the condition. I’m not great at explaining things with my Lyme brain so just pretend this sounded very scientific and smart.

To get an accurate diagnoses of Fibromyalgia you should see numerous doctors and get different opinions. I went to a rheumatologist (recommended), neurologist , Primary Doctor and a Movement Disorder Specialist. You can even go to an Endocrinologist and rule out thyroid issues and other issues before hand. Most likely if you have Fibro or Lyme you will have a thyroid issue and low Vitamin D levels. Get blood work and many panels because I found so many issues I would have never even thought to check.

I had all the pressure points of Fibromyalgia and every symptom which again many are the same as Lyme disease symptoms. My primary first diagnosed me with FMS, then two different rheums, a neuro and then a movement disorder doctor. At that time I knew I had many more symptoms than just Fibro but my Rheum refused to listen or care. I was diagnosed with Lyme and tick-borne diseases a year later.

It is hard to explain the differences in the Lyme and Fibro flare. I think the Lyme is more angry and in the brain at times (migraines daily, pressure, pain) and the Fibro seems to feel like someone is poking a fire poker in all the pressure points non-stop. They Fibro also seems to make the muscles in my case hurt worse than the Lyme flare or just daily bad day does. Of course there are 100’s of symptoms but they are all much worse than a normal bad day of pain, fatigue…etc.

The common factor tat realy set my 30 year Lyme and co’s off and my recently diagnosed (3 years old) Fibro was Stress! I was working as a higher up manager for a major retail chain/pharmacy and trying to keep a 2 million dollar profit coming in. I had been injured at work two times in the same month my stress was at an all time high since the CEO’s were coming for visits.

At no fault of mine a contractor dropped about 600 lbs of totes full of liquor on top of me. I was trapped under the pile and tweaked my leg. Being the model employee I never told anyone (my mistake) but basically at my job if you get hurt you get fired.

The next week an employee dropped heavy totes on me knocking me backwards kinking my back and my neck. Again I pretended it never happened although it did hurt for weeks I was tough and shook it off. I wish I would have filed for workers comp but I was dedicated and loyal although the company could care less that I got sick and went out disabled.

So the combination of stress and two back-to-back injuries set the Fibro and Lyme into a rage in my body and that is when I became disabled. It hit me hard and I was bedridden for weeks and could barely talk. Nearly 4 years later and now I am able to walk around the house and get out 1-2 times a year.

So even though a few people have been rude and yell at me saying “you don’t have Fibro” I know I do. I am in Fibro support groups and they are so much different than Lyme support groups. I can tell the subtle differences in Fibro and Lyme symptoms. So yeah they are both painful and a living nightmare. With both of them came Chronic Fatigue Syndrome (CFS) which is another horrible thing to have and another story for another time.

 
Worpress is acting up and deleted some things I am writing so I hope it makes sense. Hope everyone is sleeping or having a better night. Take care

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Some Of My Symptoms – From Head To Toe

1 Jul

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My Daily Symptoms From Head To Toe:

A lot of people ask me about my symptoms. I can say after reading the long check list at my doctor’s office and reading all the symptoms associated with Lyme and co’s from numerous web sites that I have 98% of all the symptoms. The only symptoms I don’t have are breast pain, lactation and menstrual symptoms for obvious reasons (I’m a male).

I will start from head to toe and try to remember and list my symptoms. Almost all of these are daily except the ones that aren’t say “often”:

Head:

Brain pressure

Headaches

Migraines (often)

Ears ringing, buzzing, popping

Sensitive to noises/sound

Facial pain

Sensitive teeth to hot and cold

Extremely sensitive mouth, can’t eat anything unless it is warm or room temp (hot and normal food temp will burn my skin in my mouth and cold I cannot handle)

Cuts in gums

Swollen glands under jaw

Shocking pain for each new bite of food

Eyes hurt

Floaters in eyes

Blurry vision/double vision

Dry eyes

Sensitive to movement

Cysts form on face like zits

Parasites on forehead like 100’s of zits

Dizziness

Dry nose and loss of smell

Loss of taste (often)

Herpes/Cold sores on mouth

Sores in mouth and on tongue

Strep throat (often)

Some hair loss

Tippy feeling (my body sways all four directions)

Nightmares

Depression

Anxiety

Sensitive to smell

Insomnia

CFS

Seeing spots (bright orange and black)

Passing out

Feeling like I’m drunk or high on drugs

Cognitive issues:

All the normal cognitive issues

Long-term memory loss (lost most childhood, teen and 20’s and 30’s memories)

Short-term memory loss (usually after 24 hours I forget)

Dyslexia (from Lyme or Fibro)

Brain fog

Loss for words

Can’t read

Hard to write

Hard to speak (often)

Neck:

Swollen neck lymph glands

2 herniated discs (caused by Lyme)

Spinal stenosis

Burning skin, numb skin, tingling skin

Chronic pain

Neuropthy

Radiculopathy

Stiff neck

Sore bones and muscles

Pops, Cracks of neck

Turrets twitches (bobble head)

Shoulders and arms:

Some of my worst chronic pain in muscles and bones (Fibro and Lyme)

Stiff shoulders

Limited mobility of limbs

Numb, burning, tingling skin

Sensitive to touch

Chest and Ribs:

Pain and soreness in ribs

Muscle pain in chest/breast area

Heart skips/palps

Shortness of breath/ air hunger

Back:

This is where most of the worst pain is (Fibro and Lyme)

Old surgery scars are always inflamed and sensitive

Stiff back

Back pain

Pain down spine

Muscle and bone pain

Bartonella zits on back

Bartonella stretch marks

Stomach:

IBS

Stomach pain

Sensitive belly button

Stretch marks from Bartonella

Vomiting

Nausea

Waist down to toes:

Chronic knee pain is the worst of my pains

Hard to bend legs

Hard to walk

Sciatic nerve pain

Ankles always hurt

Bottom of feet sore

Swelling

Redness in skin (feet, thighs)

Pops, cracks, locking of knees

Chronic hip pain

Pain in hip if I lay on my side even on cushions from the pressure

Muscle pain

Paraesthesia (tingling, numbness, limbs fall asleep)

Sea legs

RLS

Very sensitive knees (with reflex hammer)

Knees freeze up and stop working in very cold temperatures

Feet are very sensitive to heat like hot pavement or wearing flip flops hurts

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Here’s an older list from last year. Some may repeat. I know I left out many symptoms since there are 100’s but of course I am struggling to remember them all. I will try to add as I go.

My daily Lyme disease symptoms (some more sever than others):

 

Head, Face, Neck

 

  • Pressure in head
  • Headache, mild or severe
  • Migraines
  • Twitching of facial or other muscles
  • Facial flushing
  • Stiff or painful neck
  • Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose

Eyes/Vision

  • Double or blurry vision
  • Increased floating spots
  • Pain in eyes, or swelling around eyes
  • Oversensitivity to light (daily)
  • Flashing lights/Peripheral waves/phantom images in corner of eyes

Ears/Hearing

  • Decreased hearing in one or both ears, plugged ears
  • Buzzing in ears
  • Pain in ears, oversensitivity to sounds
  • Ringing in one or both ears

Digestive and Excretory Systems

  • Diarrhea
  • Constipation
  • Irritable bladder (trouble starting, stopping) or Interstitial cystitis
  • Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System

  • Bone pain, joint pain or swelling, carpal tunnel syndrome
  • Stiffness of joints, back, neck, tennis elbow
  • Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems

  • Shortness of breath, can’t get full/satisfying breath, cough
  • Chest pain or rib soreness
  • Night sweats or unexplained chills
  • Heart palpitations or extra beats
  • Endocarditis, Heart blockage

Neurologic System

  • Tremors or unexplained shaking
  • Burning or stabbing sensations in the body
  • Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
  • Pressure in the head
  • Numbness in body, tingling, pinpricks
  • Poor balance, dizziness, difficulty walking
  • Increased motion sickness
  • Lightheadedness, wooziness

Psychological well-being

  • Irritability
  • Unusual depression
  • Disorientation (getting or feeling lost)
  • Feeling as if you are losing your mind
  • Over-emotional reactions, crying easily
  • Never enough sleep or insomnia
  • Difficulty falling or staying asleep
  • Panic attacks, anxiety

Mental Capability

  • Memory loss (short or long term)
  • Confusion, difficulty in thinking
  • Difficulty with concentration or reading
  • Going to the wrong place
  • Speech difficulty (slurred or slow)
  • Stammering speech, stuttering
  • Forgetting how to perform simple tasks

Reproduction and Sexuality

  • Loss of sex drive

General Well-being

  • Malaise
  • Extremely sensitive to cold and heat in body and mouth
  • Neck glands cause shocking pains
  • Phantom smells
  • Extreme fatigue
  • Unexplained weight gain, loss
  • Swollen neck glands/lymph nodes
  • Unexplained fevers (high or low grade)
  • Symptoms seem to change, come and go
  • Pain migrates (moves) to different body parts
  • Early on, experienced a “flu-like” illness, after which you have not since felt well.
  • Low body temperature

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Here is my Fibromyalgia symptoms list before being diagnosed also with Lyme and co’s. I had all 15 pressure points and 3 specialists and a family doctor diagnosed me with Fibromyalgia but knew I had more. As you can see the symptoms are the same as Lyme but there are differences such as Fibro Flares that can occur more frequently than Lyme flares and hurt more of just the muscles where Lyme and co’s is muscle and bone and then there are the pressure points.

My Fibromyalgia Symptoms (Daily – Pain scale 8-10):

 

  • Widespread Pain (All known pressure points)
  • Morning Stiffness
  • Fatigue, lethargy
  • Vision Problems
  • Nausea
  • Sleep Disorders
  • Dizziness
  • Chronic Headaches
  • Cold and Flu like Symptoms
  • Joint, bone and muscle pain and stiffness
  • “Fibrofog”: Cognitive or Memory Impairment
  • Skin Complaints
  • Chest Symptoms (tightness in chest, chest pain)
  • Anxiety, depression, panic attacks
  • Muscle Twitches and Weakness
  • Memory Loss
  • Back/spine area in sever pain daily
  • Hands, feet and legs fall asleep or go numb
  • Feeling of death
  • Can’t walk due to sever pain in legs, knee joints and shaking legs
  • Cannot write with a pen on paper due to carpal tunnel and hands in pain or cramping up
  • Hard to speak at times
  • IBS
  • Sensitivity to noise, bright lights, medications, certain foods, heat and especially cold or air conditioning
  • Reduced tolerance for exercise and muscle pain after exercise
  • A feeling of swelling (without actual swelling) in the hands and feet
  • Weakness in the limbs
  • Heavy feeling throughout body and in my limbs as if my arms weigh 50lbs each.

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Here is a symptoms list I compiled over the years. May be duplicates:

Lyme Disease Symptoms List

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1. Unexplained fevers, sweats, chills, or flushing

2. Unexplained weight change–loss or gain

3. Fatigue, tiredness, poor stamina

4. Unexplained hair loss

5. Swollen glands: list areas____

6. Sore throat

7. Testicular pain/pelvic pain

8. Unexplained menstrual irregularity

9. Unexplained milk production: breast pain

10.Irritable bladder or bladder dysfunction

11.Sexual dysfunction or loss of libido

12.Upset stomach

13.Change in bowel function-constipation, diarrhea

14.Chest pain or rib soreness

15.Shortness of breath, cough

16.Heart palpitations, pulse skips, heart block

17.Any history of a heart murmur or valve prolapse?

18.Joint pain or swelling: list joints_____________

19.Stiffness of the joints, neck, or back

20.Muscle pain or cramps

21.Twitching of the face or other muscles

22.Headache

23.Neck creeks and cracks, neck stiffness, neck pain

24.Tingling, numbness, burning or stabbing sensations, shooting pains

25.Facial paralysis (Bell’s Palsy)

26.Eyes/Vision: double, blurry, increased floaters, light sensitivity

27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity

28.lncreased motion sickness, vertigo, poor balance

29.Lightheadedness, wooziness

30.Tremor

31.Confusion, difficulty in thinking

32.Diffculty with concentration, reading

33.Forgetfuiness, poor short term memory

34.Disorientation: getting lost, going to wrong places

35.Difficulty with speech or writing

36.Mood swings, irritability, depression

37.Disturbed sleep-too much, too little, early awakening

38.Exaggerated symptoms or worse hangover from alcohol

The following signs/symptoms may be present in those infected with Babesiosis:

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Fatigue

Arthralgias

Myalgia

Drenching sweats

Headaches

Emotional lability

Depression

Dark urine

Splenomegaly

Dizziness

Nausea and vomiting

Cough

Dyspnea

Fever

Chills

Hepatosplenomegaly

Jaundice

Malaise

Shortness of breath

Bleeding tendencies, bruising

Thrombocytopenia

Hemoglobinuria

Hyperesthesia

Pulmonary edema

Encephalopathy

Low to normal range leukocyte counts

Possible elevated levels of dehydrogenase, bilirubin,

transaminase*

Anorexia

Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection.

An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.

BARTONELLA SYMPTOMS

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GENERAL: Fatigue, Restlessness, Combative behavior, Myalgias, Malaise, Liver and/or Spleen

involvement, Abdominal pain, Infectious Mononucleosis-like Syndrome, Granulomatous Hepatitis

BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients

with Bartonella.

Note: Approximately 50 percent of patients who develop Encephalopathy can be affected

by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident.

RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may

develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the

head, and neck. The papules may appear on the skin or mucous membranes.

Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.

EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch

Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud’s Oculoglandular Syndrome,

and Papilledema.

BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis,

Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.

HEART: Endocarditis, Cardiomegaly.

BABESIA SYMPTOMS: (these are just the ones I have but there are a few more)

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generalized weakness
intermittent fever (low grade)
fatigue
insomnia
gastrointestinal (GI) symptoms like nausea, vomiting, diarrhea, and belly pain
headaches
muscle pain
joint pain
unusual weight gain
decreased appetite
sensitivity to light, touch, sound, or smells
shortness of breath – air hunger
night sweats and hot flashes
chills
arm and leg pain
swollen spleen
dark urine

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Lyme Disease, Coinfections And Depression

30 May

“You Are Just Depressed Not Sick…”

I just finished taking an online survey for a study on Fibromyalgia patients. I was invited privately through email to participate in this study to help Fibro patients with health care. After completing the survey I feel like they were basically saying Fibro patients are angry, depressed and have anxiety attacks.

There were questions that said “rate between always or never to the following questions”. The same questions just kept repeating but not in the same order over and over. Examples; “do you feel worthless”, “do you get angry”, “do you hold a grudge for hours”, “do you have anxiety even while relaxing”. There were maybe two questions relating to pain and Fibro fog.

This just made me feel as if yet again someone was blaming depression on why we feel sick. The survey made me feel as if the company conducting the study thinks that we only have a few symptoms which make us look crazy and depressed.

The same can be said with Lyme disease and coinfections. I cannot tell you how many times I have heard someone say “well if you think positive and be happy you will be cured”. I had a discussion on this on Twitter yesterday. Is that a nice way of saying “you are not sick but only depressed”? When will they realize we are depressed because we are sick!

Many of us have had a drastic lifestyle change and a lot of different issues once this disease had disabled us. For me, I lost my job, lost my car, went bankrupt, lost my savings and moved back in with my parents all within a few months. Lyme had taken over my body and I have been bedridden ever since. I am sure there are many of you with the same stories or even worse.

Of course we are going to be depressed when we are basically a prisoner in our own body and trapped in our homes with no human interaction. For me, I lost pretty much all of my family, friends and co-workers who have yet to see if I am still alive. One of them told me to “get off my lazy ass and get a job”. I still have a few friends who have stuck with me and those are true friends.

I cannot drive since everyday the world seems to be spinning (dizzy) and my cognitive issues make my reaction time slow..etc. I haven’t driven a car in nearly 3 years. I haven’t really left my house in years except to see my doctor or go out to eat maybe twice a year. I cannot be in the sun. If I do go out for an hour or two a pay for it in extra severe pain for the next three days.

I am not just speaking for myself but for thousands of others just like me. We would give anything to be healthy and happy. For me I was happy and not depressed at all until I became sick and realized so many things in my life would change for the worse.You just sit every single day by yourself and can’t even enjoy TV anymore. All the fun things and hobbies you once did you can no longer do. Who wouldn’t become depressed?

Doctors who do not understand Lyme are so quick to blame depression for everything or say it is in your head. Strangers and even friends think we are just people who are really down and do not like to have fun so we are lazy and want attention. They couldn’t be more wrong.

I talk with my Lyme friend daily and we crack jokes and we talk about our futures and all of the fun things to look forward to. She is critically ill and has more than just Lyme yet she is always there for others and smiling. That is what us Lymies do, we are fighters and we can smile through all of the pain and bullshit.

Lymies have been through a lot and we fight a battle many people cannot see. We fight with insurance, doctors, politics, diseases and much more. We are some of the toughest people you will ever meet. We are Lyme soldiers currently in battle and we need support not to be made fun of, mocked or abandoned. We have enough problems so please do not add fuel to the fire by saying we are just depressed.

And One Other Thing….

Time and time again I hear of some stupid comment about a cure that “so and so did and cured their Limes disease”.  It is not Limes or Lymes disease and there is no cure! If their was a cure we would know about it before you did. Eating more fruit will not cure Lyme disease people. Yes, somebody seriously told me that one time. So stop giving your uneducated 2 cents and stop trying to sell your snake oil.

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Lyme disease is at war with my Fibromyalgia!

14 Mar

At War

There’s a war going on in my body! I am not sure if it is all of the medication I am taking or if Lyme disease and Fibromyalgia do not get along. I think I am having a Fibro flare-up caused by trying to kill off these bugs inside of me.

I have had many Fibromyalgia (FMS) sufferers tell me they would rather have Lyme disease than Fibromyalgia. If they were in my shoes (or many others who suffer from Lyme disease) they would not think that way at all. Having and living with both FMS and Lyme disease I have the best of both worlds or the worst of both worlds depending how you look at it. It is all of the pain associated with FMS and all of the issues caused by Lyme rolled into one.

I try to remain optimistic and positive and know one day I will have a family and be outside enjoying life pain or no pain.

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