A Blast from the Past

Bear with me folks, my story below might be interesting to you all, or it might not... I'm on a mini-quest to discover the truth!  When I was in college, I became very fatigued. The doctor diagnosed me with Chronic Fatigue and Fibromyalgia. He gave me zillions of pills, and I used my college money to pay for the pills ($400/month in prescriptions). Eventually I graduated which meant I didn't have the college health plan. As each prescription ran out, I stopped renewing it. Within six months of getting out of college, I was taking no more pills, and I found myself wondering... did I ever have Chronic Fatigue or Fibromyalgia? I sort of put it all behind me like a desperately horrible nightmare until I came here to OH.  Once here I started to feel like I was having the strangest rerun of my life. The regimen of vitamins etc. for someone who has had weight loss surgery seemed identical to that which I was prescribed. B-12 shots, high-dose anti-depressant, high protein meals, low carbs, low fat, vitamins, lots of water. The doc even had me on Phen-fen (a great treatment for Chronic Fatigue)...  I'd doubted my doctor before, but now I highly doubt that he ever thought I had Chronic Fatigue or Fibromyalgia. He just fed me a line and dosed me up and made me poor to get me to lose weight. (I think). My student loans were DOUBLED ($25,000 worth) paying for all the meds that this crazy doctor wanted me on to "treat" my Chronic Fatigue and Fibromyalgia.  Now with all of these doubts, I thought I would come here to find out (not a medical opinion obviously) whether there is ANY chance I have Fibromyalgia? 

Welcome! Hope to get to know you better and hope they will figure out if this is what u really have. Ill share more of my story with you and you can read others to see if you relate.  Shannon

Thank you shannon!

Even if I don't actually have it, I do have a good friend who is suffering from it, so I would love to know more about it.

 

The only way to diagnose Fibromyalgia is the trigger points. If you have 11 out of 18, you have it. My doc said that people with fibro do have low B12. She also began treating me with antidepressants that work on the pain center. As for the Phen-fen. Never heard that! Welcome and I hope you get some good info here.

I think if it wasn't for the Phen fen, I might not have doubted what my doctor was doing, but it just seems to me he wanted me to lose weight, and treated me accordingly but thought it would be easier to call it something else.

I remember him poking me though... and I do have a lot of pain when poked! collar bones are the worst.

The B-12 and the Elevil really "cured" me of my issues... I loved the energy the B-12 gave me, and while I was feeling fatigued my super-high dose of Elevil REALLY perked me up. (usual dose, 10 mg, my dose: 100 mg). Once I stopped having symptoms... the Elevil at that dose knocked me out! I also was on meds to RAISE my blood pressure, and salt tablets to encourage retention of water and raise my BP.

Hiya, Fibro is diagnosed by the trigger points yes, but it's also diagnosed based off yrs of history of pain in the neck/shoulders.  It's also decided by the fact that people with Fibro have a tendancy to be insomniac's and don't sleep well.  There are then links to that insomnia is part of the cause of that chronic pain.  The reason is because when you sleep and go into REM your body naturally heals it's daily normal use of muscles and nerves.  Over time though as we don't sleep properly we don't get that natural normaly nightly healing which eventually causes the nerves to become more raw, and the muscls to become more tight and such.  Hence sleeping pills are usually prescribed to some degree to help us.   As for CFS, I do know that it sometimes can be put into conjuction with FMS, but only because CFS is an undiagnosable problem just as FMS.  Both are auto-immune problems.  CFS has been more linked to something called Epstein-Barr Virus both of which I have been diagnosed with.  CFS comes from a drop in WBC(white blood count).  I've been suffering from it myself since Feb.  Auto-immune diseases are often complicated with one another...lupus, rheumatoid arthritis, and fibro are the ones that are often confused, and the only up-side is that 2 of those 3 can be diagnosed by blood tests.  Fibro unfortunately can't.  As for your symptoms, you really didn't describe them specifically only what your Dr diagnosed you with yrs ago.  Can you explain what some of your symptoms are....Maybe go do some research online about the symptoms of FMS and see what they show compared to your problems.  Hope this helps

Well I have to think back over ten years ago... I remember that I was fatigued and had a lot of neck and head pain, I had severe problems sleeping. The doc did a lot of blood workup and what I remember from those was that it showed exposure to the Epstein Barr virus sometime in my past, but no recent flareup, I had elevated "liver levels" (that's what I remember) and I'm not sure about my WBC. I had some cognitive impairment which was really difficult for me... I remember taking this one class and doing lousy in the class. I think I got my first C in college with that class. I had to retake it, I couldn't stand that grade. I remember getting something like an 83% on the final exam, and taking FOUR hours to complete it. As I got sicker, I took the class again, and studied twice as hard, and still didn't do much better. When I took the final exam AGAIN (same exact test)... it took me EIGHT HOURS to get the exact same score. I felt like I was losing my mind. I hated being so completely out of it.  I remember the day the doc prescribed me the Elevil and Aleve and B-12 shots. I came home and went to sleep... I think I slept 36 hours. I remember being able to THINK again, and even my sense of smell was improved. I kept up with the meds because finally I felt like I was being helped. I don't remember if it was finances or leaving college that made me start dropping the meds. The only medicine whose end I can clearly remember was when I stopped the B-12 shots... I just couldn't nerve myself to give me the shots any more.  When I started working as a teacher at a public high school several years later I started to exhibit a lot of the same symptoms, as well as an aggravation of my herniated disk in my back. I thought I was getting a recurrence of my Chronic Fatigue. Doc put me on Elavil and it didn't help, stuff knocked me out. He changed it to Prozac, gave me some sleep meds, and as soon as I was able to get over the extreme insomnia and SLEEP, my back issues cleared up, I was no longer falling asleep in the middle o the day, and I stopped feeling sick. I have never felt much of a recurrence of these symptoms except for when I stopped having carbs in high quantities for my current RNY-like diet.... but the people on OH felt it was a carb-withdrawal rather than a recurrence of my Chronic Fatigue, and sure enough, protein balls, lots of water, and a stubborn refusal to "take" carbs to boost my energy resulted in a brightening of my energy levels within a week.  Anyway that is what I can remember.

Hiya, Well elavil is an anit-depressant that they prescribe for help sleeping and migraines as well.  Mainly prescribed to knock you out. So if that's what it was doing that's what it was supposed to do.  =)  I take Elavil and Rozarem to sleep at night, and Lyrica for my pain, plus I'm aon a pain patch I change every 72 hrs that's Fentynal.  When you stop carbs, you will feel more energy, and doesn't have anything to do with CFS.   Sleeping has been shown scientifically to help relieve back pain as I said earlier because of the restorativ sleep for our nerves and muscles.  As for the EBV that will show up in everyone as it's something we carry no matter what.  It's a virus that stays dormant..it's what causes Mono, hepatitis, and herpes  So if you have ever had mono it'd show up from a previous time, but not as active.  Mine shows currently active, even though I've had mono, and I don't have mono now.  The other reasons would be herpes, or hep, and I don't have either of those.  Also with a showing of EBV your WBC would be very low.   I'd check with your Dr for some current testing a full CBC panel, plus look yourself into lupus, and celiac disease.  Lupus, for the CFS type feelings, and such, and celiac disease for your comment about eating and such.  But, definitely get in for a full blood work, plus herpes, hepatitis, and so on.  That's just my personal view.  CFS is because you sleep too much....almost like a mild narcolepsy..Being insomniac wouldn't make that work.  Even though I have Fibro, I have moments constantly of narcolepsy, to where I've almost fallen asleep driving.  I can fall asleep walking and my husband has been there to catch me ad carried me out of a few places which is quite embarassing to say the least.  Hope you find out what's going on.  I'm glad to answer anything else, as you can tell maybe I've done tons and tons of research on things, and discussed alot with my Dr's...LOL  They say I'm their best patient becasue I'm so active with my therapy and ask so many questions..  =)  Good luck. =)

Glad your dr likes your questions. Dont think mine does. It will not stop me from researching though. Its my body, my health and my life he is dealing with. LOL Have had another intern at my gb surgeons office tell me to stay off the internet. What a joke.  Shannon