Multiple Symptoms, here is my diatribe!! I was new to the site April 06 & I have Fibromyalgia-FMS, Chronic Fatigue Immune Deficiency-CFIDS/Myalgic Encephalomyelitis- ME, Chronic Lyme Diseasewith the usual cornucopia of underlying symptoms, crashes, flu like symptoms, migraines including CPN, Babesia & recently hereditary genetic Hemochromatosis.
For the past 45 years I have been bounced around with test after test for symptoms after symptoms, A typical, A Type personality, until finally; 2006, Jan. some things fit together, the body operates as one unit, the separate medical specialists have to put all of their findings together for some kind of conclusion - a label serves as a place to start healing but not without a concrete cause.
I have worked very hard to get medical people, family & friends around me that know about my illnesses and their effects. Still to my astonishment there are not very many doctors who recognize these illnesses much less diagnose them! I am from Canada and and we have socialized health that operates more on a get you in & out as quickly as possible for a decent pay cheque. As you probably know by now, it takes more than 5 minutes to see a person with our illnesses. There are some doctors who refuse to accept new patients with these illnesses & others who think they know everything & think it is "all your head".
This has forced me to take my health into my control and I have found medical people who can take care of me by working with me. Check this site, I have found my turning point doctor here www.fibroandfatigue.com In April 2006, I was suffering from exhaustion, migraines, entire body pain --my body just cratered; I had to stop working, go on disability and since then I have been clawing my way back to better health.
So, how did I get to where I am now ill & still looking for answers, here goes:
childhood - only had a very minor case of Chicken Pox
Age 5- Herpes I major oral canker sore outbreak
Age 7- broken collar bone & concussion from falling 14’ to asphalt (with force- long story)
Age 8-10- major pain in my legs called “growing pains”. Abdomen pain that would temporarily subside with rest; Emergency appendectomy in the nick of time. (remember being very upset when I was coming out of anesthesia)
Age 11- broken arm while skating
Teen years- various sporting soft tissue injuries plus fractured bone in hand, dislocated shoulder -reinjured more times than I can count in sports as well as concussions but generally well.
Age 18- Measles, I think the German kind-sore eyes.
Age 19- “Spastic colon” or IBS as we refer to it now
Age 20- persistent bronchial cough that wouldn't stop (I took cough suppressant to control) resulted in pneumonia. First round of abx
Age 21- persistent tonsil (very large like golf balls) infections; stayed on penicillin for about 6 months until they had to go ahead & do the surgery even though it was not desirable to be on penicillin at that time
Age 22- dental surgery to remove 4 wisdom teeth, 1 impacted & resulted in dry socket (came out of anesthesia & was held by nurse as I wanted to leave the place before I was ready) another round of abx
Age 23- Mononucleosis (Epstein Barr Virus) with Hepatitis A, treatment with abx, rest, off work month
Age 24-29 (1981-87)- 4 car accidents resulting in neck soft tissue damage & TMJD (none of which were my fault. I spent years in physio therapy. Developed allergies, sinus ? draining - sinusitis?, asthma like cough that doesn't go away entirely. Noticable circulation issue with very cold extremities & butt. Had cellulite on thighs even though I was very fit (when I was 17 I only weighed 105 lbs at 5.6" & still had cellulite)
Age 29 (1986)- gave birth to my daughter, 36 hour difficult labour, started natural ended up with Demerol, Morphine & epidural. Noticed my BP was low for pregnancy 110/60. Determined I have a high tolerance to pain medications. Infection of epesiotomy. Suffered post partum depression, unmedicated & was told it was very rare, we know better in 2010.
Age 30- car accident (not my fault) neck & back soft tissue injury; off work for one year, more physiotherapy, rehab swimming, chiropractor & massage therapy- (both treatments continued regularly until 2007. since I have been off work my low back problems are less though I need regular massages).
Noticed about this time that I had the lights out fainting when I stood up quickly & at minimum I have dizziness. At 2010 if I move my head quickly I see stars & get dizzy.
In my 30's & on into my 40's countless numbers of bladder infections or symptoms of them, antibiotics In one yr. I had about 10! Lots of abx taken
Age 41- marriage breakdown, psychologist says depressed & suspects FMS due to chronic pain from so much soft tissue damage, prescribed medication; tried a few lots of side effects ended up on Effexor. Started noticing clumsy & balance issues. Diagnosis of heart Arrythmia.
Age 43- 2 doctors diagnose separately FMS, no treatment. I just continued massage therapy & chiro monthly for maintenance.
Age 44- motor cycle accident (my fault) suffered broken pelvis 4 places, concussion, temporary loss of movement in right leg which 4 week later MRI showed L4 & L5 squished pinching sciatic nerve & inherited narrowing of spine in area. Permanent nerve damage right side of leg knee down & top part of foot. After bones healed, physio started & then one week later the horrible low back pain & in every nerve of my body- sympathetic nervous system meltdown; taken to hospital for pain management that did little due to my tolerance to pain meds.
about this time I developed insomnia which became chronic & had to be medicated about 2004
Age 46- 2 sympathetic nervous system meltdowns within a month of each other triggered by pinched sciatic nerve; received multiple narcotics to put me out of misery flat on my back in a drug induced stupor for about 8 days each time.
Age 47- see a doc about managing my pain, excruciating low back, but due to fatigue, flu like symptoms CFIDS symptoms, energy & MVA crashes, identified immune problems, run down, catching flus annually & was extremely ill with them, had to have someone with me as I was unable to care for myself (from 30's on) so not healthy enough to give me acupuncture or intramuscular injections.
Age 48- low back pain very bad, lots of crashes, flu like, go to physio for acupuncture but didn’t finish treatments, didn’t help. Neuro sx I couldn’t pick up a glass, numbness in limbs, tingling in hands.
Age 49 (2006)- diagnosed with CFIDS/ME, RLS,including CPN, Lyme Disease, immune deficiency, Petuitary/Thyroid dysfunction, hypothyroid, Hypothalmus issue etc. etc. Lymes treated with appropriate regime of antibiotics. Lost feeling in my left toes & have no Achilles reflex. I went to see a talk by Dr. Kenny De Meirlier a world renowned specialist in CFIDS. He is the reason I have taken serious steps to make myself better. We can die from complications due to this illness.
And now at Jan 2007, age 50- severe abdominal pains, contractions that at the worst lasted for 8 hours, had loss of feeling in arms pins & needles in thighs & down into left leg; pain would subside but have tenderness in my liver, kidney areas. Suspected bacteria or parasite infection so doc put me on abx Nystatin 500,000U 3 – 3X day, Minocycline 100 mg 1 – 2X day on Monday, Wednesday & Friday, Metronidazole 250 mg 1 – 2X day Monday, Wednesday & Friday (update May 7-07 cut to 125 mg day, by the 12th, less pain in lower rib cage - liver area. Waiting for my MD to read some Handbook stuff & decide what doseages he will prescribe so I may actually begin the protocol), Fluconozole 100 mg 1X wk.
Largely I have had little energy & was crashed most of the time to late 2007. Gradually improved after starting CPn protocol in some areas.
While there didn’t seem to be a cure for what ails me as no one cause, I have been managing with supplements, digestive enzymes, more vegetables, hypoglycemic diet, natural & organics whenever possible, identify food allergies 2009, exercise in moderation so as not to crash, things were getting better until the abdominal contractions.
I have also naturally cleansed, full body, Candida & heavy metals. I have been able to substitute antidepressant Effexor with natural Inositol, SAMe worked ok too - no side effects, substitute antiviral Famvir with Lysine, acidophilus (good bacteria)(when I get the tingles now my naturopath makes a preparation that stops them) -again, no side effects. I still have to take sleep meds, combinations of tarazadone, triazolam, tryptophan, natural sleep meds, melatonin, benedryl & tempazepam for sleep, as well as GABA!! I have to juggle these around as my sleep is still not where it needs to be though better. I had some improvement after quite a few acupuncture treatments in 2009.
If you can't say it, don't eat it and if you can’t put it in your eye, don’t put it in a wound.
I do have a Neurologist appt. for May 8, 2007 due to my loss of feeling in my feet and lots of numbing, limbs going to sleep, pins and needles, those sorts of things. (update May 12-07, neuro doc says no MS & that sx & MS isn't caused by bacterial or viral infection) These can also be cross over symptoms from CFIDS/ME but better to eliminate or recognize MS as that can cause serious permanent damage if undetected.
I had a sleep study done in Jan. 08 that determined my brain was waking as many as 22 times an hour. My sleep hygiene is & was good, I told him about the abx & he said to let him know if my sleep improves. I will have to do this sometime here in 2010 when I continue with acupuncture to see where that goes as I have blocked Chi, my top part is too hot & bottom too cold.
I read with great interest my weekly Immune Support newsletter and found out about how serious CPN can be in 4-2007. I continue on the protocol & looking for other answers. There is lots of new research noted here on the site for CFS/ME. Thanks for the site.
With Christ in faith