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what were your first signs of fibro?

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Posted 12/10/2008 3:16 PM (GMT 0)
For quite a while I've been exhausted. Every time I have a test done it's been okay.

My body aches (like I have the flu) I'm exhausted sleeping up to 20hrs a day & I'm weak. I've treated for depression & the doctors can't figure out why I'm so tired.

A couple of months ago I had a sleep study & I do have sleep apnea. I was given a CPAP to use & it made me feel worse. I had the setting adjusted & on night #2 I woke in the middle of the night with a squeezing in my chest, thought I was having a heart attack. I'm really disappointed with the after care I received from the sleep clinic so my GP is referring me to a different doctor.

Monday my chest was sore to the touch.....this has been going on for a while. BP & everything came back okay but after he did a spiro he said I have COPD. He gave me spiriva to take + made me an appointment with a cardiologist. He did mention fibro when I was there but I told him I didn't think I had it because when I looked online I saw that there are spots on your body that are really sensitive to be touched. I don't have that. I'm just achy.

Now I'm wondering if this could be the start of it? Is this something (the pain) that gradually comes on & progressively gets worse? I'm getting really frustrated that all the tests come back okay because I know something is just not right.

I was going to try the Malic Acid that I read about this morning to see if that helped but now I'm thinking I need to go in to my next visits really falling apart (and in pain) so maybe they can catch something?
Posted 12/10/2008 4:22 PM (GMT 0)
Hi Tina,

Welcome to the fibromyalgia forum. I see you already checked out fibro101, way to go!

It sounds like you do have fibro, but you have to rule everything out before you get a diagnosis. Try not to worry about the tenderpoint test. It doesn't always mean that you don't have it.

Try the malic acid regimine, it worked for me. I also take other medications, but I did see a difference. It doesn't work right away for some. Though it helped me within a week after starting it. Just remember to start out slowly.

I hope that you stay with us. This is a wonderful group of members. Everybody is so kind and understanding here.

I hope that you feel better soon.

Hugs, Karen
Posted 12/10/2008 4:47 PM (GMT 0)
Hi JustTina, and welcome! I do hope you find answers to your problems soon. There really is nothing worse than knowing somehtign is wrong and noone seems to take you seriously, or they can't help you. I am another that takes the malic acid, and it has been a lifesaver for me. It has helped with the fatigue and all over bone weary aching feeling that I can't cope with.

Looking back, I've had symptoms for a long time off and on, starting with depression, fatigue, aching in the thighs, trouble concentrating and word recall, and pain in my hands. Then on Mother's Day this past year I had vertigo, shooting pain in the legs, facial pain, numbness of the feet and face, tingling in the hands. Now I seem to have so many symptoms and sensations, I feel liek I'm always complaining when dh asks me how I am. But I have learned to recognize most of them as my 'normal' now.

Please keep us posted on your progress gettign to the bottom of this! And I do hope that you start to feel better soon.
Posted 12/10/2008 5:48 PM (GMT 0)
Yes, the not knowing is the worst part. It's so frustrating when all the tests keep coming back ok. I'm sick of crying. Feel like my life is slipping away from me. All I do is sleep & when I'm awake I just don't have the energy to do anything or I'm in pain.

I looked at the list & below are all the things I've had within the past year or so. Some things leave then come back, some stay & just get progressively worse.

I will try the malic acid after my appointment on Tuesday, thank you both.

1. PAIN- in the muscle: .

2. FATIGUE- From feeling tired to exhausted and requiring rest periods during the day.

3. SLEEP DISTURBANCE- Unrefreshing sleep patterns " feels like I haven't slept."

5. DEPRESSION- most often reactive as with chronic pain condition.

7. PERSONALITY CHANGES- usually a worsening of a previous tendency.

8. MOOD SWINGS

9. SUBJECTIVE SWELLING OF EXTREMITIES- i.e. feels swollen but no-one can find anything.

10. HEADACHES- tension and or migraine.

11. COGNITIVE FUNCTION PROBLEMS: calculation difficulties, memory disturbances, spatial disorientation, difficulty with concentration, short term memory loss.

14. FREQUENTLY SAYING WRONG WORDS

15. BURNING SENSATIONS

17. MORNING STIFFNESS

18. EASY BRUISING

22. MUSCLE WEAKNESS- variable with no "objective" abnormality to formal testing.

23. SCIATICA- like pain

26. LOW FREQUENCY, SENSORINEURAL HEARING LOSS.

27. DECRESED PAINFUL SOUND THRESHOLD.

34. WEIGHT CHANGES- usually gained due to the lack of exercise through pain

36. HEIGHTENED AWARENESS- of symptoms of HYPOGLYCEMIA 9 when blood sugar falls)

40. SUB-NORMAL TEMPERATURE

41. NIGHT SWEATS.

42. SENSITIVE TO TEMPERATURE EXTREMES

44. BREATHING DIFFICULTIES

47. SEVERE PREMENSTRUAL SYNDROME

50. NON-CARDIAC CHEST PAIN- which may simulate cardiac disorder.

52. ABDOMINAL WALL PAIN.

54. TEMPOROMANDIBULAR JOINT DISORDER- usually due to abnormal muscle tone.

56. CARPAL TUNNEL SYNDROME-possible related condition.

57. HAIR LOSS-secondary to psychological stress from FM.
Posted 12/10/2008 6:00 PM (GMT 0)
I forgot to mention, when I first started getting the symptoms, it was neck and shoulder pain. I have pain elsewhere at times, but always in the neck and shoulders.

I also have fibrofog. But the malic acid seems to help with that too. I hope that it works for you.

Hugs, Karen
Posted 12/10/2008 6:58 PM (GMT 0)
Hi, JustTina and welcome!  Did you check out the Fibro 101 thread...the second thread on the forum?  There are links to good info about fibro in there.  You may have discovered it since you have a list of symptoms.

 

You could have the tender points and not realize it.  When a doctor know where to push, you would be amazed that you were that tender!  I know I was.

 

As far as your chest being tender, you could have some costochondritis going on.  I have that and it hurts to breathe sometimes.  Also, if I press on the breast bone, it is tender.  I take ibuprofen (with food) for this problem.

 

I'm so glad that you found us!  You have come to a great place where there are wonderful people that will help you live a full and enjoyable life.  Just ask questions and read posts.  We are here to help you.  Hope to hear more from you soon.

 

Sherrine

Posted 12/11/2008 1:59 AM (GMT 0)
hi tina,

i am glad you found us! there is so much information here and so many wonderful people. hopefully you will be able to start finding the answers you are looking for.

looking over your list of symptoms, i would say you could definitely have fibro (i have all of those symptoms except for the hair loss). problem is, they are going to have to rule out everything else (m.s., lupus, lyme, etc.) before giving you an official diagnosis. it is a pain in the rear and so, so frustrating, but unfortunately they have to do it that way.

i am also sure it's possible to have fibro without the tender points-i have all of them, and that was actually the first symptom i really noticed, but i'm sure like most everything with fibro, "normal" just means "normal for you".

i hope you can get a diagnosis soon. there's no cure for fibro, but there are medications that can help your symptoms. also, just knowing what's going on can bring great peace of mind.

{{hugs}}
~danielle
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