Fibro/CFS

These are my symptoms:
headaches, occasional left sided jaw/ear/neck pain, shoulder and arm pain (mainly on left side, but happens on right side occasionally), chest pain which radiates to left side and through to back, mid and lower back pain, indigestion, upper and lower abdominal pains, left sided hip/leg pain, swelling in both legs/ankles and at times in the wrists, tender spots on entire body but mainly at sternum, middle back, and left side.
I also have a few other symptoms including hair loss, nausea, and an occasional flutter feeling in the center of my chest.
I checked out hypothyroidism and have almost every symptom, but my test came back normal last year.
I was recently told by my physician that I have chronic fatigue syndrome and possibly fibromyalgia. I don't know what the problem is, but I've had it for almost a year now. I am getting depressed because I hurt all the time and have no idea what is wrong.
Does anyone who has been diagnosed with fibro or other similar condition have these same symptoms?

[patsy10]

Yes, I have been diagnosed(fibro) and also have those sore spots on my back, sternum, ribs.  I have the pain in my neck, left side...all the way down.  I have lots more too like numbness, tingling, twitching etc...It's horrible.  I really don't believe the fibro diagnosis though.  I think it's something much worse.....

[Jade2007]

"I really don't believe the fibro diagnosis though. I think it's something much worse....."

I've heard many people who have fibro say that.

[patsy10]

It's because fibro is NOT a disease.  It's a group of symptoms with no known cause.  I believe there is a cause but physicians either don't know or aren't willing to keep looking.  "Something" is causing all these symptoms.......

[Coffycup]

I feel like I've found the Mother Ship. Nice to know I'm not alone :o)

I don't exhibit the "classic" Fibromyalgia symptoms (like the 18 pain points, etc.), but a kazillion blood/urine tests, a Pap Smear/Pelvic Exam, an abdominal ultrasound, an eye exam and nearly ten horrible doctors later, I found a doctor who was truly Heaven-sent. She put her arm around me and told me that it wasn't all "in my head", and that no one yet knows what causes Fibromyalgia, but she suspects that I have it.

Here is me (in case someone else might be wondering if how they're feeling could be Fibromyalgia): heavy limbs, especially the lower left leg and the lower right arm, heavy, painful chest, burning under the breastbone (thought it was an ulcer), pain in the lower right abdomen (thought it was gallstones), blurred vision (thought it was MS), tension headache, knots in the back, geographic tongue, nervous stomach, irregular and/or horrible periods, interrupted sleep, dizziness, nausea, and "fluttering" in the chest. I was truly afraid that I had some terminal disease that no one was discovering. I'm nearly 32, a non-smoker or drinker, and before this, I did step aerobics 3 times a week and had a great quality of life.

I don't know what's worse - being sick of being sick, or having to deal with doctor after doctor who not only tells you you're "fine" (and, in my case, prescribing every anxiety med known to man), but is irritated, as if you've wasted their time.

The key is finding a good doctor. They still exist! Mine has me on an Ambien and stretch/yoga program for starters, to see if a good, uninterrupted sleep and movement of muscles and joints will help my body to relax. After a month, I'm to see her again to discuss how the program is working, and if I need to try opiates.  

I hope everyone finds their own relief. It's horrible, isn't it?

[Coffycup]

Oh, and 2A2J - I forgot to add, my hair falls out as well. So yes, I
definitely believe it could be a symptom.

[patsy10]

Do you have numbness, tingling and muscle twitching???

[amythist2779]

Hi, I also have fibromyalgia and I have the muscle twitching. Sometimes its so bad that my whole arm will jump off of the bed. The doctors have me on requip for my legs at night and zonagran too. This fibro **** really stinks.

On top of the fibromyalgia, have you been diagnosed with anything else? The reason I am asking is because almost everyone I have talked to that has fibro also has many other health problems.

Take care

aurora

[patsy10]

No I haven't really been diagnosed with anything except fibro.  It started with sudden leg weakness and neck pain etc....Docs said it was the herniated disk in my neck and I had a spinal fusion.  All this started a few days after surgery....twitching etc...All I had prior to surgery was leg weakness, neck pain, brisk reflexes and numbness and tingling.  Now I have a myriad of horrible symptoms that are present during all my waking hours.  I have muscle pain that never goes away.  It stays in certain areas.  They are sore to touch.  I have too much to write down here.  My arms and legs jump and jerk with the twitching. I was (am) convinced it's MS but I have seen 4 neuro's including an MS specialist.  I've had spinal tap, numerous MRI's, evoked potentials, EMG...all completely normal.  They all said no MS.  My 4th c-spine MRI, which I had about a month ago showed a Chiari 1 malformation.  The neuro didn't think this was causing all of this but I am getting another opinion in a couple weeks.  The only other thing is....there's a possibility I had lyme disease many years ago.  I had bullseye rashes followed by neurologic syndrome etc...Who knows.....

[Coffycup]

Oh YES I definitely have muscle tingling, twitches and numbness, particularly a squeezing in the middle of my chest that is awful - the first time I got it, I thought I was having a heart attack. The tingling is mostly in my fingers and feet, and the numbness is in my lower right arm, and lower left leg. I just stumbled upon a wonderful site that has a myriad of symptoms listed, including blurred eyesight, which is one of the worst of my symptoms. I'm nearsighted anyway, but my sight began to blur one day, out of the blue, and I was sure I had MS. I was so resigned to thinking that I could just be going out of my mind, but I'm so glad to finally be able to put a name to how I really feel now!

Here's the site: http://www.fibromyalgia-symptoms.org/

[Coffycup]

Oops, I replied to this already, but I don't think it was posted, due to me adding a link to another site (sorry MedHelp!). The site describes a MYRIAD of symptoms, one of which is called "Costochondritis" - I'm FINALLY able to put a name to the squeezing I've been having in the middle of my chest. It hurts unlike anything I've ever experienced. And yes, I definitely have muscle weakness, tingling (in my fingers and toes), and numbness - in my lower right arm, and my lower left leg. Add to that the blurred vision and loss of balance...for a while, I was terrified that I had MS.

[Coffycup]

Geez, so it DID post. LOL. That's my cue to go to bed :o)

[tamlloyd]

I have fibro and the pains that are the worst for me are my arms, hips and hands. At one time, my hands always felt like they were frost-bitten. I had to continuously soak them in warm water. The bengay patches work to "ease" the pain on my hips at times. I can't raise my arms to even do my hair. I have to wear wigs most of the time.

I do have a very understanding husband who has researched the condition and helps me as much as possible although he feels he isn't doing enough. I tell him there is only so much you can do.

[patsy10]

I've been to that site.  Yes, it is a very good website.

[Zerlina]

2A2J,

I have pretty much been experiencing all of the above with the exception of swelling in lower extremities for the past 2+ months.
I've told it's likely fibromyalgia as well.

[amythist2779]

AH I also have chiari 1 malformation. Along with RLS, pituitary tumor, cushings disease, CFS, Myofascial pain syndrome, degenerative arthritus in my back, and bipolar. I think that about covers it. Oh ya and the fibromyalgia.

They also told me that my chiari wasnt something they were too concerned with right now, but after reading your post it makes me wonder, because I have had the same symptoms you are having. THis has been going on for about 4 years for me, and I havent gotten any real answers yet. They just keep me medicated at the minimum. In my opinion, right now I have NO quality of life. I am missing out on my childrens activities and it stinks.

Ever feel like you wish you could have the old you back?

[Coffycup]

It's depressing that I can remember how my "old life" was. Just going about my business without any cares. I miss that so much. I miss eating and drinking certain things, like chai tea, which seems to make me flare up now. And I was planning to go to a concert this Friday night, but I'm probably going to have to cancel. Baby steps, you know? I'm probably going to try to sit through a movie first. I did go bowling a few weeks ago, and had the best time, but the concert is two hours in LA, and I don't want to overdo things.

[coffeebean]

Does the chest pain that everyone has last for long periods of time and burn. Sometimes in the upper shoulder/chest area and sometimes down a little lower toward the breast?  I have a tenative fibro diagnois and have so many questions?  The pain is not unbearable but I worry about it.  I also have tired heavy legs, pains that shoot thru my legs, arms, fingers, toes, tiredness and had some heart flutters and anxiety but have been given prozac for them and it seems to have helped so far.  Can anyone shed some light on their chest pain?

[patsy10]

Google Chiari malformation.  It's very interesting.  There is even something about people being diagnosed with fibro and really having a chiari.  I don't know if it's the cause.  My neuro doesn't think so.  I'm getting a second opinion.

[jaky]

I WAS DIAGNOSED WITH FIBRO ALMOST 1 YEAR AGO. COULD TICK ALL THE BOXES THEN!! NOW I AM MUCH BETTER BUT NOT COMPLETELY CURED .NOT SO SURE THERE IS A CURE ACTUALLY, MORE TRY TO KEEP IT UNDER CONTROL. I LOST ALMOST 3 STONES IN WEIGHT (THRU DIET CLASS) AND DO REGULAR EXCERCISE. THIS SEEMS TO KEEP MOST OF THE REALLY HORRIBLE SYMPTOMS AT BAY. STILL TWITCH AND ENCOUNTER THE OCCASIONAL ACHE AND PAIN HERE AND THERE. TRY TO KEEP MY SRESS LEVELS TO A MINIMUM - EASIER SAID THAN DONE AS I'M SURE YOU ALL KNOW.

[jaky]

I WAS DIAGNOSED WITH FIBRO ALMOST 1 YEAR AGO. COULD TICK ALL THE BOXES THEN!! NOW I AM MUCH BETTER BUT NOT COMPLETELY CURED .NOT SO SURE THERE IS A CURE ACTUALLY, MORE TRY TO KEEP IT UNDER CONTROL. I LOST ALMOST 3 STONES IN WEIGHT (THRU DIET CLASS) AND DO REGULAR EXCERCISE. THIS SEEMS TO KEEP MOST OF THE REALLY HORRIBLE SYMPTOMS AT BAY. STILL TWITCH AND ENCOUNTER THE OCCASIONAL ACHE AND PAIN HERE AND THERE. TRY TO KEEP MY SRESS LEVELS TO A MINIMUM - EASIER SAID THAN DONE AS I'M SURE YOU ALL KNOW.

[mommy2two]

Hi All.
I don't know if I have fibromyalgia so maybe you can all offer some advice. About 8 weeks ago I noticed my left arm was difficult to drive with and it really struck me as beign strange. It felt heavy. I thought it felt weak but looking back 'heavy' is a more accurate term. I went to my dr. who sent me to a neuro. By the time I saw the neuro I was conviced that I had ALS. Convinced. He said probably not but ran an EMG which came back normal. I had a neurosurgeon friend look at the EMG results and he said no signs of ALS. Since that time in the past 8 weeks I have very bad pain in my neck, shoulders, and arms. I have some pain in my collarbone. My legs ache, primarily in my knees, on and off but this has been the case for most of my life. I also have RLS on and off since the birth of my first child. I'm twitching on and off everywhere but primarily in my hands (thumbs) and usually after I do a lot of housework. Now, today my leg feels like it is falling asleep. At this point I don't know if the twitching is my nerves or something else. I am a wreck. I'm scared to death because I have no idea what's happening. I asked my GP about fibromyalgia and he said "no that's just depression." Does this sound familiar to anyone and should I rest in the neuro's diagnosis of no ALS?
Thanks so much in advance!

Janell

[idesofmarch]

too many to read so i might have missed this info.  If you have fibromyalgia and get tested for thyroid disease it will probably come back neg. if they don't do the expensive bloodwk test.

[patsy10]

My neuro did run the expensive one(high sensitivity) as well as the standard thyroid tests.  I don't have the results yet.

[idesofmarch]

My long post of stress might have something helpful in it for the lot of you. Hope you all get what you need and have a good day.

[idesofmarch]

Wow, I thought that I was going crazy when my fibro came on and on and on.They say that it is not progressive but it has been for me.  I've had it for over 6 years and I was working full time up to 7 months ago when by body JUST SAID NO! It said no to outside the home work, yardwork, housework, brain work etc.  MY legs hurt before but not like this.  When I try to rest my body,mostly my legs will spasm, twitch and literally jump more than 6inches off the bed or recliner. It scared me to death. The more I use my muscles the more they react like that.  It's bad enough that I was kicking the heck out of my husband at night but now I do it during the day too.  I take .5mg of mirapex for periodic limb movements and I take  2 kolonipin (mg?) also for restless legs & sleep and I take 10mg of Flexeril at bed. All this just to help me sleep and keep still and keep from hurting my husband AND I still don't sleep well and if I get tense before bed or had a really physical day I have breakthru kicking etc. anyway. If I could just find one doctor that Knew it all so that I wouldn't have 4 doctors, a PT & 2 psyciatrists telling me their opinions; then hear about natural cures by many people on T.V or in books or friends trying to be helpful I would be less tense to say the least.LOL The longer I have this plus Hypothyroid & Sleep Apnea etc...the more symptoms I get that I didn't even know about. It comes up, I search the web for the symptom and it always leads me to FMS & Thyroid. I've been tested or checked for everything else including MS, brain tumors, lung problems, lyme, lupus, RA, Carpal tunnel(Ido have) nerve conduction testing more than once, herniated disks more than once, allergies of every kind. It's just FMS & Thyroid & of course depression.I forgot that.  Brain fog!!!! Congitive problems getting worse too. Pain meds don't work anymore, I never know how far to walk or which exercises I can handle on any given day.  Sorry I've been needing to vent.  My husband is under enough pressure right now and I'm trying to spare him. Well I hope that I answered the original post without stress anyone out too much.  Sorry again. Not everybody will get the same symptoms or as servere.  There is hope that the research being done now will come up with a cure for people like us. As God is my Witness there is HOPE.

[Zorlak]

CFS- same comprehensive symptoms- chest pain is common. I just pop up the pills and vitamins, and pain goes away until next morning. What else can you do?