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pencilbeckett

New Member

Joined : Jul 2008

Posts : 9

Posted 8/2/2008 3:03 AM (GMT -6)

Hi All

Just thought i would tell you my story and see if it is familiar. In March 2001 following losing a baby at 22 weeks pregnant and having surgery and a blood transfusion i started having very strange symptoms they all came out of the blue with a dizzy spell and palpitations starting the whole thing off then the following persisting symptoms started:

Pressure feeling in head

tinnitus

tingling/crawling sensation

burning feelings on skin that would move around

visual snow blurred vision

dizzyness

pin prick pain sensations

aching in muscles and joints that moves around

really bad muscle twitching especially in calves after exercise

I have probably missed some symptoms. Anyway i went to the doctor and was phobbed off with stress a few times then finally had a ct head and lumbar puncture all ok. Then phobbed off again. These symptoms have carried on for years and have flared up and down but never disappeared. in the last few months i have started getting slow heartbeats and dizzyness on standing and also on straining, talking coughing. I was bitten by a tick years ago and thought it may be lyme but my gp mentioned chronic fatigue syndrome. The only thing is i do have fatigue and tiredness but i have never had marked weakness and can always get up in the morning and go to work.

I thought the fatigue and tiredness was the main symptom.

Would appreciate any comments thanks

Jenni

hippimom2

Veteran Member

Joined : Jul 2005

Posts : 5403

Posted 8/2/2008 9:14 AM (GMT -6)

Jenni, I am so sorry you are going through this and that docs aren't paying enough attention to your symptoms. I get so mad when docs pass everything off as stress or depression if they can't find an answer. I'm not sure that your symptoms are classic chronic fatigue symptoms. It is possible that you have lyme, but it is a very very difficult disease to diagnose. Please visit the lyme forum here because they can tell what labs you need to get tested at - I guess there are only a few labs that are sensitive enough to pick up a positive lyme - most regular labs are not sensitive enough, so most people who get tested through their regular docs will have a negative test even if they do have lyme. It's also best if you can see a doc who specializes in lyme disease.

Let me know if you have any other questions.

Diagnosis: UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985

Meds: Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

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jev

Regular Member

Joined : Jun 2008

Posts : 168

Posted 8/5/2008 5:02 PM (GMT -6)

Hi Jenni and welcome! Your post is definitely eerily similar to many others here in the cfs and fibro forums. However, there is definite hope in a real diagnosis and a vast array of treatments available for whatever it is. Sometimes it just takes a lot of trial & error and patience to find out what works best for you. Being bitten by a tick does not automatically constitute Lyme disease but there are definitive tests for that. Please see my replies to Chellybelly, Krista78 and Judilyn for info and links to other info that may of some help to you. Take care and God bless!

Gentlest of hugs,
John

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John (53)

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^{_{Dx'd June 2008 with Fibromyalgia & CFS possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)}}

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_{^{Several meds too numerous to list or remember!}}

Sherrine

Forum Moderator

Joined : Apr 2005

Posts : 17932

Posted 8/13/2008 11:11 AM (GMT -6)

Hi, Jenni! Well, I would first be checked for Lyme. You would need to see a Lyme literate doctor and have bloodwork sent to a special lab in California...Genex, I believe is the name. The Lyme forum will be able to help in that area.

Most of the symptoms you are having are also symptoms of fibromyalgia. You could have that problem. You do want to rule everything else out first though. You see, fibromyalgia symptoms are very similar to other illnesses and you want to get those ruled out. A tender point test is the way they determine if you have fibro...after ruling out other illnesses. You might want to go to the fibromyalgia forum and read the thread called Fibro 101. It's the second thread from the top of the page. It has links to good information about fibro, including a list of symptoms.

I know it's difficult trying to figure out what is going on. A rheumatologist is probably your best bet for a correct diagnosis...after Lyme has been ruled out. I wish you luck in finally getting a correct diagnosis.

Sherrine

Forum Moderator/ Fibromyalgia

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Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

ktp812

Veteran Member

Joined : Jul 2007

Posts : 715

Posted 8/13/2008 2:12 PM (GMT -6)

The lab for Lyme Disease testing is IgeneX in Palo Alto California..

Sherrine

Forum Moderator

Joined : Apr 2005

Posts : 17932

Posted 8/13/2008 4:19 PM (GMT -6)

Thanks,KTP! I was close, but no cigar!

Sherrine

Forum Moderator/ Fibromyalgia

***********************

Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

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