Could I have MS, Chiari 1 Malformation, Hypothyroidism? What is making me vibrate?

[jenn38018]

I have a long history of things I could go into, but don't have the length to do it.  Basically I was originally diagnosed with RA but now have diagnosis of fibromyalgia.  Not totally satisfied with that diagnosis.  As far as labs, my rh factor is highly elevated, ANA positive, lupus titer slightly positive, sed rate elevated, metabolic panel normal, TSH levels normal, magnesium normal, etc.  I have recently been having a lot more symptoms and severity in the ones I already had.  Some of these come and go and some stick around.  Here they are:joint pain, muscle pain and weakness, skin tender to the touch in many areas, horrible fatigue (feels like I am drugged), neuropathy and tingling in extremities, eye problems, sensitivity to heat and cold (hands and feet tingling and feel as if swelling in heat), clumsy, forgetful, tip-of-tongue problem, horrible neck pain, bad pressure headaches, difficulty losing weight, restless legs, itchy feeling all over body, insomnia, low sex drive, etc.  Now I have started having these episodes of waking up feeling like I am vibrating from deep inside my body and I can't make it stop.  It is a strong, fast, rhythmic feeling that builds up and makes it feel like my whole body is shaking.  Done it twice in one week.  I also keep getting these sudden tingling feeling wash over me along with a feeling of doom and an urge to cry for no reason.  It will quickly pass and doesn't seem to be triggered by anything.  I am not depressed, but all I want to do is lie in bed because I feel so bad.  What could be causing all of this.  Can't just be fibro?

[Kevin Pho, MD]

Fibromyalgia is certainly a frustrating diagnosis, and can cause the symptoms you describe.  An elevated ANA and rheumatoid factor also invites possibilities like lupus and rheumatoid arthritis.  A second rheumatological opinion can be sought to examine these considerations.

If there are neurological symptoms, like memory loss, 'tip-of-tongue' phenomenon, headaches and restless legs, you can consider brain imaging to rule out possible neurological disease.  A CT or MRI would be reasonable options.  Blood tests to rule out diabetes and B12 deficiency can be considered as well.

I would consider these options and discuss them with your personal physician.

Followup with your physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_

[jenn38018]

I didn't mention also that I have in the past week been getting these horrible headaches that are associated with a lot of neck pain.  Also, everytime I turn my head any direction my neck grinds and pops.  At times it seems even too hard to hold my head up on my own, so I just have to lie down propped up on pillows.  This all started with the vibrating episodes.

[PlateletGal]

I think I know and understand your frustration. I was diagnosed with CFS and I also have a postive ANA titer (1:640) I've had so many of the symptoms you've listed and the majority of them the last few years, when my illness was becoming more disabling.  I can only tell you that many fibro patients' often have CFS symptoms and vice versa. You may want to use a search engine and find the CFIDS Association of America and especially if you have 4 of the 8 symptoms listed below:


Weakness and exhaustion, lasting more than 24 hours, following mental or physical activity
Unrefreshing sleep
Substantial impairment of short-term memory or concentration
Muscle pain
Pain in the joints, without swelling or redness
Headaches of a new type, pattern or severity
Tender armpit and/or neck lymph nodes
Sore throat

[jenn38018]

Thank you for your posting!  I have every single symptom you listed plus some.  I have often wondered about CFS, but the idea was always shot down because of the fibromyalgia.  I saw my rheumatologist on Friday and expressed my concerns and talked about my new symptoms.  I told him my biggest fear was that we were going to keep attributing everything to fibro and miss some underlying issue that could be treated in the process.  He agreed, and has scheduled a myriad of tests to be performed on me.  I am also being referred to a neurologist, psychiatrist who has a special interest in fibro patients and the neurotransmitters involved, and an internist who also has a special interest in fibro patients and their pain control.  I am also set up to wear a halter monitor starting on Thursday to see if we can catch one of the vibrating episodes and tell if it is effecting my heart at the time.  

I had a horrible episode of restless body (yes body, not just legs) last night like I have never had before.  Didn't get to actually fall asleep until about 8am after trying since 12am.  I just can't function like this anymore.  Are you on any kind of meds for your CFS?  Are they helping?

[PlateletGal]

Hi Jenn,

I'm on a research protocol that you can find online. The name of the protocol is "The Marshall Protocol" and although it is a research protocol, the medications they use are NOT research meds. btw, my nic is the same on their website and you can send private messages. It is a complicated protocol that can take 1-3 years, but there are many success stories. Dr. Marshall saved his own life with this protocol after he was diagnosed with sarcoidosis. Unfortunately you know the protocol is working because it makes you feel worse, because it is killing the pathogens in your body that are making you so ill. So the die-off reaction can be pretty intolerable at times.

Dr. Paul Cheney has a lot information online about CFS and heart problems and he also has his treatment plan (mostly nutritional) for CFS that you can find. I know I take ACETYL L-Carnitine for my tachycardia and that helps. I also take D-Ribose (studies have shown that it helps both fibro & CFS patients), magnesium, B12 (drops) and COQ10. I would be taking more supplements, but the MP prefers that their members' aren't taking anything at all. Fish oils are also good and help with inflammation.

We have a fibro board here on this website and I check it often --- so you always know where to find me.

Hang in there and I pray that they can get your symptoms under control.

[jenn38018]

Thank you, I will definitely look it up.  I have a question about the tachycardia.  Have you always had trouble with your heart racing, or do you just notice it when the CFS is flared up?  Have you ever had symptoms like you were having a heart attack.  Is your heart sensitive to medications, caffeine, etc?  Do you think the vibrating feeling could be atrial fibrilation?  Sorry for all of the questions, but I am being put on the monitor Thursday, and I am really curious to see if this vibrating sensation is because of that.  I have also had symptoms of heart attacks in the past that sent me to the ER, just to find out my ECG was normal.  I also get the sensation of my heart racing a lot, and being very aware of my heart beat.  Certain meds like Cymbalta seem to really send it racing and give me a lot of the heart attack symptoms.  

[PlateletGal]

Hi Jenn,

Before I was diagnosed with CFS, I often had heart palpitations. When my CFS was getting worse, I started having the tachycardia symptoms. I also have PVC's often, but never have had the vibrating sensation that you described. Since fibromyalgia affects your nervous system, I wouldn't be surprised if that is causing your symptoms.

You know what ? I just stumbled upon this discussion in the Neurology forum ! There are MANY posters with the same vibrating symptoms that you have:

http://www.medhelp.org/forums/neuro/messages/34724.html

[PlateletGal]

I forgot to mention something that may be of interest to you. There is a laboratory in Nevada that can test people for both CFS and fibromyalgia. However, their test is still in the research phase, so I'm sure insurance companies will not cover this test. The name of the lab is Red Labs USA and they have a website.

Also, the University of Nevada School of Medicine just broke ground last week to build a new facility that will conduct research and provide clinical care to patients' with CFS and fibro. It will also develop educational programs for the community and physicians ! They will also try to seek answers for other neuro-immune illnesses such as MCS, gulf war syndrome, atypical MS and autism. = )

[jenn38018]

Wow, you are full of information.  I would be very interested in the  tests in Nevada, but that is really far for me.  I live in Memphis, TN.  I am glad to hear that steps are being made toward learning more about these conditions though.  Thanks again.

[PlateletGal]

Hi Jenn,

That lab is a national lab so if you really want to get tested for fibro and are willing to pay for the test, I would check out their website. They do require spinal fluid though --- not whole blood, which, needless to say... really bites !

[jenn38018]

Very interesting.  I will check it out.  I really do appreciate your help!

[idesofmarch]

I agree with everyone,yes Fibro can cause all those symptoms and I have them all too.  Get checked also for sleep problems through a sleep clinic.  They can tell you allot after you've been tested. They found not only sleep apnea  but restless legs syndrome, period legs (body) movements sleeping with my mouth open and adjusting my C-pap (in later studies) face and headgear in my sleep.  In my first study they said that I stopped breathing for approx. 30 seconds 100 plus times per hour and I never reached the deep sleep time that really helps our mind and body regenerate and heal. Answer yes to just a few of these questions and you should get tested A.S.A.P.!  Do you wake up with a headache- Do you wake up with a sour or metalic taste in your mouth- Do you snore(ask a bedmate) Do you ever wake up gasping for air- Do you wake up just as or more tired than when you went to bed- Do you have trouble staying awake during the day- Have you ever driven somewhere and couldn't recall the some of or the whole trip- Have you ever fallen asleep in the middle of a conversation- Have you ever dosed off at a red light- If you take a nap during the day do you wake up unrefreshed- There are probably more questions to ask but these are enough. Take it seriously too! Best of luck to you and hope that you are on your way to recovery soon.

[geemar]

Please get tested for lyme disease. Please. Estern Blot and spinal tap if needed.

[CC2007]

Many patients who are diagnosed with fibromyalgia, chronic fatigue syndrome actually have Lyme disease and one or more of the co-infections. Babesiosis causes the fatigue. My husband had it and was sleeping 22 hrs a day! 5 months of antibiotics and he was fine.

Here's a symtpoms list for Lyme:

Musculoskeletal System
Joint pain or swelling or tenderness
Stiffness of joints, back, neck
Muscle pain or cramps
Bone pain
Heavy feeling in one or more limbs

Neurological System
Tremors or unexplained shaking (especially at night)
Burning or stabbing sensations in the body
Weakness or partial paralysis/stroke-like symptoms
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Lightheadedness, wooziness
Sudden jerking of fingers or entire limbs
Pain in spinal column

General Well-being
Unexplained weight gain, loss
Extreme fatigue
Swollen glands
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
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.  (If it was mild, you may not even recall this.)

Eyes/Vision
Double, blurry or dim vision
Increased floating spots
Pain in/behind eyes, or swelling around eyes
Over sensitivity to light
Flashing lights
Optic neuritis

Ears/Hearing
Decreased hearing in one or both ears
Buzzing or clicking noises in ears
Pain in ears or sound sensitivity
Ringing in one or both ears
Pressure or feeling of fullness in ears

Digestive and Excretory Systems
Diarrhea, irritable bowel
Constipation
Irritable bladder (trouble starting, stopping)
Frequent urination that is not normal
Upset stomach (nausea or pain)

Respiratory and Circulatory Systems
Shortness of breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Heart blockage

Psychological well-being
Mood swings, irritability, rage
Unusual depression
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Overemotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep

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

Head, Face, Neck
Unexplained hair loss
Headaches, mild or severe
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy)
Tingling of nose, cheek or face
Stiff or painful neck or creaking
Jaw pain or stiffness
TMJ – sudden onset, jaw spasms
Sore throat, hoarseness
Loss of sense of taste
Difficulty swallowing, throat spasms

Females only:
Unexplained menstrual pain, irregularity
Unexplained breast pain, discharge

Males only:
Testicular or pelvic pain

LYME FACTS
1. You do not have to recall a bite or have gotten the target rash to have Lyme disease. Less than 50% of people with Lyme do.
2. The tick that carries Lyme is as small as the period at the end of this sentence and their nymphs are nearly microscopic.  Ticks are on the move at 35ş and above. It’s a year-round problem.
3. You do not have to experience ALL of these symptoms to have Lyme disease.  It is also typical for many of these symptoms to come and go or occur once and never occur again.
4. It is possible to have Lyme disease and have a negative test result.  After Lyme bacteria enter your system, it tricks your immune system into no longer producing antibodies to fight it, hence, a negative test result. There are also other numerous factors that can affect the results. (Google: Lyme disease negative test results.)
5. Lyme bacteria hide in the spinal fluid, bone, tendons, muscle and nerve fibers and tissues and in many cases are not “floating” around in the bloodstream where they can be picked up on a test. It is a cousin to the syphilis bacteria and very difficult to eradicate.
6. It takes a LYME SPECIALIST to diagnose, test for and treat Lyme disease and any of its associated co-infections. To find one go to www.LymeNet.org.
or www.ilads.org.  Lyme specialists do not require a referral.  

NOTE: Everyone may have symptoms that appear on this list; however, it does not mean he/she has Lyme disease.  If one has numerous symptoms on this list and no other explanation for them, consider Lyme.

[acSEEKSHELP]

I'm going through a similar routine seeking info/answers from doctors. Many of your symptoms are familiar to me. Could I ask you if you have had sudden tingling in arms and leg and throat on one side only, been able to perform the test to disprove stroke though had the symptoms happen again, and go away again? The after feeling is cold and dizzy.

[jhudrlik]

hi, i have had all these symptoms - thought i was going crazy and no doctor would really listen - finally my gynocologist noticed that my thyroid was a bit swollen - i actually ended up having hashimotos disease. they have taken out my thyroid ( i had cancer in mine- but that is rare)- anyway i am now on levothyroxine which i am still trying to get 100% back to normal with and ive been on it over a year now - but i am getting close.
i know exaclty what you mean when you feel like you are vibrating when you wake up!! also the tingling and the fear, the palpitations, swollen fingers, neck cracking, i also had wierd pains in my chest area - like throbbing and swolleness, i never got the tiredness that they talk about.. but everything else... i had it!
the thing about mine was that when they first tested me my tsh levels looked fine but after surgery they found out that my antibodies are negative (whatever that means) but because of this my tsh tests were wrong. there is a way to test your antibodies and if i were you i would ask about this - they told me i had fibromyalgia too - also raynaulds disease, etc etc before we figured it out
i have since found many articles that say fibromyalgia is probably just an effect from thyroid disorders - good luck!!
jenna