Fibromyalgia

[carrieb]

I hope some of these things help you ginseng.... it sure is a struggle... I've had my difficulties since '89.

Speaking of "musts" my entire life changed just from purchasing a memory foam mattress top - I actually was able to sleep again. Can't afford the real memory foam mattress thing, but the mattress topper is 3" and now I can sleep without being in pain, when I can sleep ...

[BlessedAssurance]

I had a lot of nerve pain. I started taking Cymbalta and has helped immensely. I don't know if it's something that may help any of you, and I'm exhausted right now, but it may be something to look at.

You'd be using it for an offlabel reason, and need to take over 100mg/day. I found out about it from a Physician's Assistant who had heard it helped nerve pain patients.

My issue was that if anyone or anything brushed my legs or feet my whole body shook in response. It was like having hundreds of feathers/ants/crawly things all over. The doctors who finally helped me had a very long name for it that I don't remember.

God bless you all. I wonder how many of us here are 'broken.'

[rere4jc]

Originally Posted by MyJesusILoveThee

I FINALLY found a doctor who will listen to me! Woooohooooo! God is good!! Been praying for a doc who can figure me out and not tell me I'm crazy. I'm so excited. Now, maybe we can work on dealing with it and I can get some rest!

Anybody else deal with docs who refuse to listen to you? I was at the end of my rope.

They are giving antidepressants for that now. I was diagnosed in 1999 no meds. just pain and suffering until I was diagnoised with depression and started on meds. and the pain is gone! Its just a matter of finding the right Dr. I recommend a Dr. that will run tests. If he doesnt tell him what you want thas the only way you will ever find out. The Dr. I see now I tell him how I feel he tells me what he thinks I tell Him I want tests and then I get results. I lived with neck pain for almost 20 yrs. took 1 exray after all these years and found my problem. Had surgery to fix it no more neck pain. Couple of months ago I told the doc to do some blood tests. Been feeling really tired along time, come to find out I have Hypothyroidism. Still trying to get the right dosage but feeling better already! You just have to take charge!! After all these years and thousands of dollars I finally got fed up and took charge. So my advice to everyone you know youre body, do some research on your symptoms and see what test you may need then tell your doc. If he wont help ya find another...Rememeber they work for US!!!

[cindysocal7]

My sister just told me about this particular thread in RR...


I am 23 and I am about to be seen by a Rheumatologist for arthritis. I know ever since I found out that this is a great possiblity I have been getting, "you are too young to have arthritis." Well, I am here to tell you that God doesn't care what they think, He has given me arthritis. Now, granted it isn't osteoarthritis since I am only 23, but auto-immune arthritis can be even worse due to complications with immunity...


Either way, the ER doctor I saw this last week (I was having painful breathing) put me on prednisone to get the inflammation down. Prednisone is a steroid that surpresses the immune system so that it will stop attacking my soft tissue around my joints.... so far it has helped, but I will only be on it for 5 days.... I pray that the Lord gives my doctor the wisdom and understanding I need. Being that I have probably had this condition for a while, I am nursing my 4 month old still and I usually don't mesh well with medication- I need understanding about those things.


Also- all of you being put on anti depressents for pain... be careful. Everyone I know in my family with chronic pain was put on anti depressants before even being depressed. The doctors assumed they were depressed because they were in chronic pain...

[MyJesusILoveThee]

thank you guys for your encouragement. i will be praying for all of you as well.

i'm finally getting some sleep now-no panic attacks or restless legs in almost a week-PRAISE THE LORD! i go back in 3 wks and we're gonna have to talk about pain management-that part has not gone away.

my love to you all in Christ, michelle

[atruckersprincess]

Originally Posted by katt

what is fibromyalgia?

Here is a list of symptoms that people with fibro might have. It came from www.healingwell.com

1. PAIN- in the muscle: often described as aching, burning, throbbing, gnawing, shooting, tingling. Almost always exacerbated by exercise and may or may not be present at rest. Can be migratory and differing from day to day.
2. FATIGUE- From feeling tired to exhausted and requiring rest periods during the day.
3. SLEEP DISTURBANCE- not being able to fall asleep and or able to stay asleep. Unrefreshing sleep patterns " feels like I haven't slept."
4. PARESTHESIA- numbness or tingling. ( non dermatomal)
5. DEPRESSION- most often reactive as with chronic pain condition.
6. ANXIETY- may include panic attacks.
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.
12. FREQUENT UNUSUAL NIGHTMARES- or being unable to dream.
13. DYSTONIA- stiff muscles due to involuntary contracture. Difficulty in moving tongue to speak.
14. FREQUENTLY SAYING WRONG WORDS
15. BURNING SENSATIONS
16. LIGHT HEADEDNESS- "Fibro Fog", spaced out, cloudy.
17. MORNING STIFFNESS
18. EASY BRUISING
19. MILD BUTTERFLY RASH- (LUPUS TYPE) May be photo sensitive.
20. NEUROGENIC INFLAMMATION- rashes, may be severe itching. NI causes the symptoms and signs of Dermatographia.
21. DISEQUILIBRIUM- Vertigo
22. MUSCLE WEAKNESS- variable with no "objective" abnormality to formal testing.
23. SCIATICA- like pain
24. PHOTOPHOBIA- Intolerance of bright lights.
25. ALTERATION OF TASTE, SMELL and HEARING.
26. LOW FREQUENCY, SENSORINEURAL HEARING LOSS.
27. DECRESED PAINFUL SOUND THRESHOLD.
28. TINNITUS- ringing in the ears.
29. OCCASIONAL EXAGGERATED NYSTAGMUS- involuntary rapid movementof the eye ball.
30. CHANGES IN VISUAL ACUITY- impaired function of the smooth muscle used for focus as well as skeletal muscles for tracking.
31. INTOLERANCE OF ALCOHOL
32. ENHANCEMENT OF MEDICATION SIDE EFFECTS
33. INTOLERANCE OF PREVIOUSLY TOLERATED MEDICATIONS
34. WEIGHT CHANGES- usually gained due to the lack of exercise through pain and or tricyclic antidepressants
35. RESTLESS LEGS
36. HEIGHTENED AWARENESS- of symptoms of HYPOGLYCEMIA 9 when blood sugar falls)
37. POSSIBLE CARBOHYDRATE INTOLERANCE
38. SYMPTOMS OF IRRITABLE BOWEL SYNDROME (I.B.S.)
39. HEARTBURN- secondary to I.B.S.
40. SUB-NORMAL TEMPERATURE
41. NIGHT SWEATS.
42. SENSITIVE TO TEMPERATURE EXTREMES
43. HEART PALPITATIONS
44. BREATHING DIFFICULTIES
45. HEART MURMUR-Mitral Valve Prolapse appears to be more symptomatic in FM than normal.
46. IMPOTENCE- reactive and occasionally.
47. SEVERE PREMENSTRUAL SYNDROME
48. FREQUENT VAGINAL YEAST INFECTIONS.
49. MUSCLE SPASM- twitching.
50. NON-CARDIAC CHEST PAIN- which may simulate cardiac disorder.
51. PELVIC PAIN.
52. ABDOMINAL WALL PAIN.
53. DRY EYES AND MOUTH.
54. TEMPOROMANDIBULAR JOINT DISORDER- usually due to abnormal muscle tone.
55. RAYNAUD'S- like symptoms.
56. CARPAL TUNNEL SYNDROME-possible related condition.
57. HAIR LOSS-secondary to psychological stress from FM.
58. VULVODYNIA- Vulvar discomfort or pain, burning, stinging and irritation.
59. PLANTAR ARCH-or heel pain. Exacerbated in FM.

This list of symptoms has been correlated by the Arthritis Foundation S.A

As far as testing for fibro, I was told that is no specific test, but rather the absence of any positive test results for other illnesses along with fibro symptoms will generate a fibro diagnosis. That is only if you are fortunate enough to find a dr. who is willing to listen to you. Many dr's do not believe in fibro.

[HisJewel]

Hi, I just found this post. Weighing in that I too suffer from FM and juvenile rheumatoid arthritis, so I know what you're going through.

It makes all the difference in the world to find a compassionate doctor. Hope you find some treatements that will help you.

Sorry, I'm fading fast here at 9:30 pm (my body still thinks it's 10:30 pm - stupid daylight savings! grrrrr).

[ngraham]

I also have Fibromyalgia and have also now been diagnosed with Colitis. UGH. I went for 9 years of doctors telling me it was all in my head and finally 5 years ago a nurse practioner in my doctor's office finally took the time to figure out what was going on. Fibromyalgia was not what I wanted to hear, but knowing that it wasn't in my head afterall is what I wanted to hear. I have my bad times and my badder times. LOL Fibro is no picnic to say the least. I have the chronic fatigue, restless leg syndrome, the constant aches and pains, depression and I did have the irritable bowel that sometimes goes with Fibro. But that's now turned into Colitis. They have alot of good drugs for Fibro now. Lyrica worked wonders for me, but when my ex employer changed health insurance carriers, the co-pay for Lyrica went sky high. So the nurse practioner changed to Lyrica to Gabapentin and it really seems to help better than the Lyrica did. They use Gabapentin for Parkinson's patients also. I'm on 90mg of Cymbalta a day also and it does seem to help somewhat with the Fibro pain. I liked reading everyone elses suggestions for helping with their Fibro symptoms. Thank you for sharing!

[MyJesusILoveThee]

rrrrrrr....bad reaction to increase in meds. wasn't pretty. going to call my reg doc today-PA was no help and just acted like i'm nuts.

[Mishkins]

Yep - hearing you all. I had fibro but as I've got older (48 now) it's gone more into a chronic fatigue type illness - although if I push myself I do feel like I've been hit by a truck the next day.
My 20 year old daughter HATES how much sleep I need and is always telling me to get up and moving and it will be "good for me".. I KNOW how much sleep I need and if I don't get it life is a blur with insane "foggy head" and literally nodding off to sleep whilst sitting up working!! I don't think anybody who hasn't experienced this can truly understand what a nightmare it is. I was depressed about it but through Jesus I am learning to simply live with it and continue in prayer that I will be healed. In HIS time.
Mishk.

[pegmo]

I just bought some MSM today...hope it makes a difference in my pain.

[LookingUplinda]

Originally Posted by pegmo

I just bought some MSM today...hope it makes a difference in my pain.

I would say it will take about 10-14 days, I think you need to get it up to a certain level in your blood, not sure exactly, all I know is that after using it for about 3-4 years, I rarely if ever have muscle pain any more, and I have stopped taking it for about a year or 2. I still do not have ANY pain. I do take it on rare occasions yet because I'm afraid of the pain returning.Dosage: start at 1,000mgs. a day, can go up to about 6mgs. a day safetly. The first one I got was so big I couldn't swallow it. I prefer the capsules as opposed to the big hard tablet.

[LookingUplinda]

Originally Posted by Mishkins

Yep - hearing you all. I had fibro but as I've got older (48 now) it's gone more into a chronic fatigue type illness - although if I push myself I do feel like I've been hit by a truck the next day.
My 20 year old daughter HATES how much sleep I need and is always telling me to get up and moving and it will be "good for me".. I KNOW how much sleep I need and if I don't get it life is a blur with insane "foggy head" and literally nodding off to sleep whilst sitting up working!! I don't think anybody who hasn't experienced this can truly understand what a nightmare it is. I was depressed about it but through Jesus I am learning to simply live with it and continue in prayer that I will be healed. In HIS time.
Mishk.

me too! My days are pretty short! It is very depressing to wonder just what the heck is happening to your body! GABA helped with that. Do you notice that you get overwhelmed easily too? Also, Ashwaganda was a miracle too for the morning groginess which was lasting like 4 hours every morning! I used like one or 2 bottles, now I only use it if I start to slip back into it, but that is getting more rare!!!!!!!!!!!!!!!Now if something would work for this fatigue!!!!!!!!!!!!

[Ready4theRapture]

I was diagnosed with RA in the mid-80's and with Fibro, CFS in 2001. I have had sleeping problems since I can't remember when. I was a total mess. I thought I was losing my mind. I still suffer pain in varying degrees 24/7; some days are worse than others. I can't remember the last time I had a good night's sleep where I woke up feeling refreshed the next day. I have a hard time sleeping through the night and have had the sleeping tests done with no results. I currently take a muscle relaxer, Neproxin and Vicadin, which I use very sparingly ~ I use it when I absolutely cannot get any relief. My feet, legs and hips are the worst.

I still get up every morning and go to work ~ even on the days when I can barely walk when I get up. It's by the grace of God that I'm able to do this. I refuse to let it get to the best of me and I have learned to rely on the Lord to get through each day. My motto has become I can do all things through Christ who strengthens me.

I'll pray for all of you who have been suffering from this condition. It's the pits, but that which doesn't kill us only makes us stronger. Take care and God bless you!

[pegmo]

Originally Posted by LookingUplinda

I would say it will take about 10-14 days, I think you need to get it up to a certain level in your blood, not sure exactly, all I know is that after using it for about 3-4 years, I rarely if ever have muscle pain any more, and I have stopped taking it for about a year or 2. I still do not have ANY pain. I do take it on rare occasions yet because I'm afraid of the pain returning.Dosage: start at 1,000mgs. a day, can go up to about 6mgs. a day safetly. The first one I got was so big I couldn't swallow it. I prefer the capsules as opposed to the big hard tablet.

I bought the 1000 mg capsules. So I pulled the capsule apart and mixed it in with my beverage. Excited to find something to try! No negative side effects so far.....did you have any?

[MezzerClaw]

My husband says to that i sleep to much and that I would feel better if I would "just get up" he said before he left that "I'm a pain somtimes"

[LookingUplinda]

Originally Posted by Ready4theRapture

I was diagnosed with RA in the mid-80's and with Fibro, CFS in 2001. I have had sleeping problems since I can't remember when. I was a total mess. I thought I was losing my mind. I still suffer pain in varying degrees 24/7; some days are worse than others. I can't remember the last time I had a good night's sleep where I woke up feeling refreshed the next day. I have a hard time sleeping through the night and have had the sleeping tests done with no results. I currently take a muscle relaxer, Neproxin and Vicadin, which I use very sparingly ~ I use it when I absolutely cannot get any relief. My feet, legs and hips are the worst.

I still get up every morning and go to work ~ even on the days when I can barely walk when I get up. It's by the grace of God that I'm able to do this. I refuse to let it get to the best of me and I have learned to rely on the Lord to get through each day. My motto has become I can do all things through Christ who strengthens me.

I'll pray for all of you who have been suffering from this condition. It's the pits, but that which doesn't kill us only makes us stronger. Take care and God bless you!

I can't imagine but by the gace of God that you are able to do thatI will pray for you too, I can't imagine how wonderful it will be some day to not have this! Just as right now for the past 20 years I can't imagine not living in this hell. My dad always used to say that, what doesn't kill ya......4 years ago to make matters worse, I was diagnosed with that orange sized brain tumor, that took a 17 hr surgery, I can't even really believe I went thruthatof which 15% still remains.

[LookingUplinda]

Originally Posted by pegmo

I bought the 1000 mg capsules. So I pulled the capsule apart and mixed it in with my beverage. Excited to find something to try! No negative side effects so far.....did you have any?

Absolutely NO side effects. I can't believe you drank itisn't it bitter

[LookingUplinda]

Originally Posted by MezzerClaw

My husband says to that i sleep to much and that I would feel better if I would "just get up" he said before he left that "I'm a pain somtimes"

He's right Mezz, we are a pain, one big walking talking pain, how can we be anything elsethis just sucks the big sucker!

[MezzerClaw]

Originally Posted by LookingUplinda

He's right Mezz, we are a pain, one big walking talking pain, how can we be anything elsethis just sucks the big sucker!

He said sorry later, and that he is the pain, not, I, but it still stings a bit. He's right about about he being the pain....