Hello everyone and thank you for the words of welcome to the group. I could really use some support. I only personally know one other person with fibro. As I always feel like I'm crazy, its really important to me to connect with others who may understand what I am going through.
I've only been diagnosed for about 2 months now, but have had this for over 2 years. I've been to so many doctors and have been tested for MS along with a host of other things. I've had MRI's and CT scans. My Doctor doesn't seem to know too much about fibro either, but she is the one to dx me with it. I've had all the ordinary pain associated with fibro, but then I have had a lot of other crazy symptoms too. My doctor always just looks puzzled and says that's not fibro pain. I really want to know if any of you have experienced any of the following: muscle fasculations/mini muslce spasms all over, pain in one area that can be intense and then moves around at times too, odd numbing sensations in various parts of the body, buzzing and tingling, involuntary movement of fingers and toes? Burning sensations. Anxiety. Whole leg pain. Bone pain. Wanting to move my legs a lot. Trouble sleeping. Am I crazy or what?
I'm on Cymbalta and Lyrica. And it has helped, but it doesn't take everything away. Sometimes I get crazy flare ups too (ie some days are just worse than others even with the meds). And....some of the pain is just always there. It's very stressful!!!
Has anyone else experienced any of these symptoms. Please let me know. I feel that I am all alone.
The muscle spasms - Check
Intense areas of pain that move - Check
Numbing of some areas - Check
Tingling - Check
Finger and toe movements - Sort of - not often but do get sore of "tics" if you will
Burning - Check
Anxiety - Check and Double Check
Leg pain - Not always but sometimes
Bone Pain - Check * 206
Restless leg syndrome - Check
Trouble sleeping - I find it hard to get off to sleep and when I am nothing in the world will wake me up.
You are not crazy, just welcome to the world of fibro, Remember that not everyone will have the same symptoms, Chronic widespread pain lasting at least 6 months is the only one that by definition we all have in common.
As for your medication you would benefit from some pain killers too, maybe codine, or tramadol as a start. xx
I think that every single symptom that you have is fibro-related and has been talked about on here. I hope that makes you feel some better. YES, fibro is a miserable illness and has a thousand faces that it hides behind. It jumps around, causing awful pain in one spot and then the pain may disappear and you end up with a different type of pain elsewhere. Your skin may burn or tingle or be numb. You feel like a bone is breaking or else that a certain area has hot fire in it. You can't sleep, you have restless legs when you sleep, you have twitching muscles when you're awake.
And it's also true that even if you're on the meds, some days are worse than otherse, fibro-pain wise. And we go crazy with pain when a storm is coming.
Yes, welcome to the crazy world of fibromyalgia - pain in the muscles. Who ever gave it that name really didn't have a clue. They should have named it: " the illness that has a thousand faces and each face will drive you mad."
It's good that your doctors ran tests on you to rule out other illnesses. That's pretty much standard procedure for the rest of us.
I'm sorry that you're one of us. I know how awful and frustrating fibro is. I strongly recommend that you read some of the previous posts to get an idea of what others have to say about what's going on in their bodies. You can even search for a particular symptom or problem if you go to the top right of our page. There's a tiny spot there where you can type in what you're looking for it it'll search through all of the old postings and let you know wha'ts found.
Please come back and join us again. Knowing that others go through it as well is very liberating. We don't suffer through this illness all alone. There is no reason to do so.
Gentle hugs and sympathy,
YES! To all of it! I am new to this site too. So far people have been great and very understanding. Personally, Cymbalta and Lyrica did nothing for me, as well as the countless others. Currently I am drug free but probably why I am so grumpy lol :P. The biggest thing to remember is that you're NOT CRAZY! I don't know how many docs told me that, after a while you learn not to care what they think becuase you know your pain is real. I have had it just over 5 years now and I am still getting new symptoms. Keep your chin up, finding ways to relax and reduce stress is the biggest help for me. We are all here for you!
Hi Hopeful, unfortunately a lot of doctors don’t know about fibro. My doctor at one appointment said to me "I don’t mean the muscle exhaustion caused by fibro I mean the total exhaustion caused when you’re anemic. (I’m chronically anemic). I was a bit stunned and said to her the fibro exhaustion isn’t just in the muscles. When I told her about a fibromyalgia clinic near my home, she was really quick to refer me, although I haven’t heard from them yet.
I like others have had almost all the symptoms you’ve described except the involuntary twitching of hands and toes. My fingers and head do shake at times when I’m really tired.
You’re not alone, and not crazy either, there is a posting with a great list of symptoms on here. I’ll look for it and let you know where you can find it.
Despite the fact, that most of us can relate to these symptoms, you should write them down and discuss with your doctor to ensure that nothing else is happening. You may want to search this site to see if there are postings and suggestions on how members are dealing with these issues (supplements, herbs etc) and discuss them with your doctor before using them. A number of the members are working with rheumatologist s who seem to understand this syndrome better.
Welcome to the forum Hopeful Gentle hugs
Hi Hopeful, I think you can access the Monster list of symptoms at this site. http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm
Hope it helps
Mike - what a GREAT response you gave! Why can't a doctor name off all these things and say someone has FIbro?? They just drag it on and on! Hugs! Laurie
it sounds like you dr needs to do some research on fibro. many of us here suffer from most if not all the things u listed. however so many of us have more than just fibro to blame.
you r not crazy not at all. dont be afraid to let your dr know what is happening cause u may have something else along with fibro i hope not for your sake but all your symptoms need to be documented.
try not to stress it will onlu make your pain worse. u really think that u need to see a rhumey dr. they know how to treat fibro and will or should help u with your meds. i hope that if your insurance requires a referal that your pcp will give u one.
sleeping is a huge issue and one that i think we all suffer with at sometime or another. getting a good nights sleep is hard if u r in aloot of pain. i know there r different meds to help and not all r the quote un quote real sleeping pill. an exp is amitriptiline. it is an antidepresnt that can help with the sleepless nights. there r others but my mind is not working great.
for me one of the most puzzeling symptom that u have listed is the burning sensions. i suffer from them at times. i have no idea how our skin can feel like its burning when there is no reason to. i have no idea what sets off this pain or how to make it stop.
as for the other symptoms many can be helped with meds. i know at times the last thing u want to do is take more pills but it may be the only answer for some of these problems. treating anixety can be done with meds and or counseling. i suffered with it very bad in the beginning and was taking xanax like candy. after alot of cousneling i can control it with out meds 90% of the time. i was tought lots of different ways to get myself through what i was going through. have to see a person in the phyc dept. does not make u crazy. i cryed when my dr said i needed to go. however it ended up helping me way more than i could have imangined.
please take some time and comb this site and u will be able to find out about different meds that those of us on here take for different things as well as the different types of dr that may be able to help. but please also feel free to ask a question like u have done here.
welcome and i wish u the best in finding the answers u need. many hugs :)
You are so not alone. This is all fibro for defo. Had it for the eight years I’ve had fibro. Your doctor needs some extra training I think. I had a physiotherapy assessment a few days ago and he had to “nip off a minute” when he must have had to ask a colleague about fibro. It’s not very helpful for us to meet untrained professionals but I guess there’s too many illnesses for them to learn about these days.
Good luck and try not to worry too much about new strange symptoms. 90% of the time they are down to fibro but some, you just have to ask your doctor if they bug you too much.
Welcome Hopefulhol! I'm new on here too; although, I've had fibro for almost 18 years now. Every single thing you listed is indeed a symptom of fibro. It's very common to go through all the tests to rule out MS, RA, and lupus, simply because these conditions have overlapping symptoms. You'll also find that we all have varying degrees of symptoms and our symptoms will change over the years. Please don't let that scare you; it's simply that things will change. An area that didn't hurt before may hurt and an area that did hurt won't. You may have numbness or may never have it....
Don't be afraid to take any research you find to your doctor to share with him, and if you feel you need to change doctors, try to find a good rheumatologist or neurologist who is understanding. They are even doing sleep studies on fibro patients, so more and more doctors are becoming informed.
Here is a very long list of symptoms (you may already have some of these and you may never have some of these- everyone is different) Forgive the length; it's a very LONG list!
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, shortterm 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.
Thank you so much for taking the time to share your experience and for the list of symptoms. I have had most of these on occassion. Although I have only been experiencing this for about almost 3 years now I have experienced how the symptoms change. I started out with the intense itching. That was a nightmare that lasted about 3 months before I got on some meds to help reduce it. I went to a dermatologist and he dx me with dermatographia. I am learning from you that it was probably neurogenic inflamation.
All in all it is just helpful to know that I am not alone. I so value your response. Thank you, thank you again!!!