Does This Sound Like Fibromyalgia At All?

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Regular Member

Date Joined Oct 2005
Total Posts : 315
   Posted 10/3/2008 5:54 PM (GMT -7)   
I have been diagnosed with Fibro (as well as Lupus, dry eye syndrome, spinal OA and a few other things). I have a documented history of spine problems & every time I had an MRI, it would find some problem in my spine (herniations, stenosis, now scar tissue..). My last MRI was over a year and 1/2 ago and I can't afford a new one. But anyway...I get the impression that my Rheum thinks all of my current symptoms are Fibromyalgia, but I personally have doubts about it.
I get severe muscle cramps and spasms in my feet, ankles, knees, thighs, entire back, neck, shoulders, and even in my hands. They do not always occur at the same time, though. Also, I have been getting nerve pains and paresthesias all over my body. I have had sciatica before and now I get sciatic pain again in the same area (though not as severe and it's not constant). I also now feel it in my right leg. I also have a deep, sharp, achy bolt of pain that goes down the front of my left thigh. I also get flares of severe nerve pains that radiate around my outer hip areas. I get pins and needles in my feet and hands, sometimes it's been in my entire arms. I get these weird "buzzing" sensations in odd places, like different areas on my head, the back of my neck, my feet, on different spots on my back, and sometimes other random body parts. Oh, I also get horrific shocking nerve pains on the tops of both feet at times. Sometimes at night, I wake up (sleeping propped up on my back, not my sides) with numb hands, or numb entire arms; I've also woke up one time with a large area of my right face completely numb (in the outer lip and entire cheek area). Sometimes I get these sort of icy-hot icepick someone is poking me with an ice cold, but hot small needle - and its occured on my arms, my back, my legs...
I am on several meds to control it (nerve med, muscle relaxer, and tramadol) but yesterday out of the blue it got very severe. I have such pain inside my lower spine in one area (though it seems to be in my L1 or L2 area) and my back is rock hard from spasms. I cant put much weight on my right leg becuase it makes the nerve pain around my right hip/groin area too shocking. I can hardly walk due to the pain, nor can I stand straight. I hurts inside my spine when I bend my neck forward.
Ok, sorry, I don't want to write too long of a book....but it just irks me b/c my Rheum seems to attribute all this to Fibro. I don't have any tender areas, except it hurts on the outside a little where I have the spasms. But most of the pain feels deep. From my past spine problem experience, it just seems like it's all stemming from my spine somehow. Plus I've been taking Lyrica for the nerve pain for 10 months now (and it does not help the deep achy pains I get in my spine or some other joints). I know Lyrica is approved to treat Fibro, but it does not help me in the way it's supposed to for Fibro. Also, the only thing that really helps ALL of these steroids. I have gotten nerve blocks and ESI's in the past, and they work for a few weeks. I've also taken oral steroids and dose packs...and any time I take steroids, most of my pains, spasms, and paresthesias (and headaches) disappear. ALthough in May I had another ESI and it helped alot, but that time I was still feeling a deep achiness in my hips/sacral/pelvic girdle area. If i walked around more than 1/2 hour, the pain started coming back. So I feel something has been getting worse inside my spine, I don't think it has anything to do with Fibro. Plus, I keep reading that steroids are the enemy for Fibro & steroids can make it worse. But when I take steroids, it's like a miracle drug for me.
Does all or some of this sound like Fibro symptoms??

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 10/3/2008 6:45 PM (GMT -7)   
I am recently DX
I would suggesst that you take a look up top at
"Fibro 101 and resources"
That is what helped me so much
I believe Sherrine put it together.........
She did help me as well as the members alot
Hope this helps

  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
     Listen To Your Heart,Look Inside Yourself,Understand You

Regular Member

Date Joined Sep 2007
Total Posts : 40
   Posted 10/3/2008 6:47 PM (GMT -7)   
I have found during my misery tour of the past year
since I became ill, that "fibro" is the default diagnosis
when they(docs) don't know what it is - and have
exhausted the possibilities of things it could be, within
their given range of speciality. I have seen 16 docs now,
GPs , Rhuems, I.D. docs, Endos, Immunologists, Neuros,
psychiatrists, and a Lyme specialist (on the board of ILADS)
The pain is the worst of it - followed by the sleep issues,
but what you will find is everybody responds differently
to the different meds offered up to moderate your symptoms!
Only a long careful arduous journey through meds will get you
to a good place. I found only percocets really helped my level
of pain, yet many here swear by malic acid (tried it for a month
and it did nothing for me) Many swear by this or that sleep
aid - but ...You get the idea. Tried Lyrica for a a year now...
didn't do much for pain or sleep but I kept taking it at the
urging of 3 of the docs.

I just got back a comprehensive battery of immune related
tests, all came back "normal" even ones that had been
"abnormal" only a few months ago rolleyes

The only thing that has truly helped ME is glutathione
injections (THANK GOD) and allowed me to go back to work.
Yet - for many people they do nothing confused

Keep a symptoms log, keep dates and types and amounts
of whatever meds you are trying, get and keep copies
of all your tests and bloodwork!

Post Edited (Enochroot) : 10/3/2008 7:50:13 PM (GMT-6)

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 10/4/2008 10:38 AM (GMT -7)   
I do keep a log and write all down so I can go over it with doc
A daily log that is .......
I am seeing a new rhuemy .....Dr Bell in London Ontario the 16th of this month
I agree the pain is the worst as is the fog at times ....most times......

Wishing you the best ...........LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
     Listen To Your Heart,Look Inside Yourself,Understand You

Regular Member

Date Joined Oct 2005
Total Posts : 315
   Posted 10/4/2008 12:24 PM (GMT -7)   

Oh, I've kept logs before, but it seems like most docs think I'm strange or something. Over the past year, I've been getting different rashes (I don't think they are lupus related) but by the time I get in to see my Rheum, the rashes were either gone or just barely there. One time I did take pictures, but I can't get close enough to see the rash without it being all fuzzy. I did tell my Rheum about it when I saw him next and also told him I took pictures but they were too fuzzy. He then chuckled.

But I just wanted to know from anyone...if the symptoms I described here sound typical of Fibromyalgia? I do not have soreness all over, except it hurts where I get spasms. Like I do not have tenderness upon pushing into areas of my body. I also do not feel massive fatigue (such as like I've had with lupus flares). My arms and hands seem to get numb when I'm in certain positions. My toes and sometimes entire feet get numb after driving for more than 15 minutes or so. Sitting is a huge problem for me as well.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17557
   Posted 10/4/2008 2:04 PM (GMT -7)   
Hi, Baybreeze, and welcome to the fibromyalgia forum!  All I can say is...WOW!  You do have your problems.  Some of these things sound like fibro and other sound like back problems. 
I have had fibromyalgia for many years.  I too get the tingling in my hands and sometimes my feet.  If you have pain in your hands and lower arms you could possibly have carpal tunnel...another symptom many frbromites share.  I have had buzzing in various parts of my body and I've had some facial numbness...mainly my lower lip and chin area.  When I bring my head forward, I can feel pain going down into my shoulder blades.  All of this is frightening, I know, but, if you have been thoroughly checked out for other illnesses and come back negative, this is probably caused by fibromyalgia.  It's so easy for doctors to roll that name off their tongue and send  you on your way...right?  GRRRR
I have some back problems too due to scoliosis.  I can not sleep on my back at all.  If I do, my hands and feet and sometimes my arms go numb.  This may be what is happening to  you.  I sleep on my sides.  When I get on my side, I wedge a pillow behind my back.  This way I can be on my side or partially on my back.  But I can't lay totally on my back...even in an elevated position like you are sleeping.  Besides, you are putting pressure on your lower back by keeping your head elevated.  See if you can sleep on your side with the pillow wedged behind your back.  This may help you.  I know it helps me a lot.
Check out the Fibro 101 thread that Lyn told you about.  It is the second thread on the forum.  There are links to all sorts of info about fibromyalgia including a list of symptoms.  You may be surprised how many of them that you have!  There is a link to great stretching exercises and these are done sitting down.  This may help loosen up the muscles for you.  Walk whenever you can.  The more you sit or lay, the stiffer  you will be and your pain will be greater.  Also in the Fibro 101 thread is a link to What Else Could It Be?  You want all that ruled out.  But, you are seeing a rheumy so he/she probably has ruled out Lyme, MS, etc.  Most of us have gone through that route.
Hot showers help with fibro pain...actually any moist heat.  I have a rice bag that I heat in the microwave that gives off moist heat for up to a half an hour and it really feels good.  I also get light massages.  You need to make sure the therapist knows all about fibro so that the masssages are light.  They have helped me, too.  I do the stretching exercises a lot and I walk daily.  When the weather isn't good, I have a walking-in-place video that I use.  The more I move, the better I am.
Enochroot mentioned the malic acid/magnesium supplements.  I take those and they have helped me a lot.  They don't help everyone but many here have had good success with them.  There is a link in the Fibro 101 thread all about them along with information on how they work in the body and also a double blind study that was done using them.  Read that and see what you think. 
Lastly, you mentioned cramping.  You could possibly have a potassium deficiency.  Bananas, potatoes, and tea are a few good sources of potassium.  I had cramping in my legs and feet but, when I started taking 1,200 mg. of Citracal (calcium citrate) the cramping stopped.  I was surprised so I googled it and saw that low calcium can cause cramping, too!  So that's something to think about, too.  Not everything is caused by fibro...but it sure is easy to think that since there are so many symptoms.
You will have to try various things to see what help you with your pain.  Some members love Lyrica and other hated it and stopped it.  It makes no sense to put drugs in your body if they are not helping you at all.  You should talk to your doctor about this and maybe they will try something different for you.  It's trial and error with fibromyalgia.  What works for one won't work for another.  That's another mystery of fibromyalgia.
Meanwhile, let us know how you are and ask questions.  We are here to help  you.  Also, read back posts.  There is a world of info in them.  I'm so glad you joined us and I hope to hear more from  you soon!
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Regular Member

Date Joined Oct 2005
Total Posts : 315
   Posted 10/4/2008 3:49 PM (GMT -7)   
Hi Sherrine,
Thanks for all of your information, there! I actually do have other diagnoses such as Lupus, Dry Eye Syndrome, Migraines with Aura, cervical spondylosis, lumbar spondylosis, Hip OA, Ankle OA, Spinal OA, sacroilitis, and I had severe lumbar spinal stenosis. I had to have surgery for the stenosis 2 years ago b/c the pain was just unbearable and I had to walk bend over at almost a 90 degree angle. I also have mild scoliosis and DDD. There are all confirmed diagnoses from lab tests, x-rays, and many MRI's; well, except I had no tests for my migraines.
I actually have been tested for all kinds of vitamin and mineral deficiencies and test came back fine. My Rheum saw my hands cramping, smooshed together one time and said it looked like tetany, so he sent me for another slew of tests. And my Rheum was the one I was seeing from beginning to now from when my back problems first started. He knows my whole back history and had even suspected Ankylosing SPondilitis at first. He sent me for a sacroiliac MRI, but there was no fusion, so I guess he ruled out AS. I even heard about the malic acid thing somewhere else and did try it for 1/2 a year with no results. I do use heating pads all the time and they do feel good while on a spasming area, but they do not stop any of my spasms. I've tried Lidoderm patches, all sorts of creams & rubs, supplements, fish oil, you name it.
My Spine Surgeon, well I didnt see him for my current exaserbation, but last time I saw him he said my scoliosis got a little worse (though it's still mild) and he could see my hips got worse degeneration as compared to previous x-rays and MRI's. Plus...he said my spine arthritis, hip OA, and scar tissue can be causing some problems. But it all does not explain my upper body problems. However, I do get bouts of extreme pain in my neck (cervical spine) and when that happens, the pain goes to my left shoulder and sometimes down my arm, which seems similar to sciatic in the lower body. I actually have to lay on my back, propped up with a cervical pillow. If my head goes back too far, then I've had times when my arms went numb. If I turn my head to the right and down a little, then my right hand gets pins & needles and eventually would get numb. I never had my cervical problems imaged b/c my lumbar was just so much worse. But I really suspect I have some sort of cervical pathology.
Steroids always give me relief (sometimes total, sometimes moderate). But what is strange is.....when the steroids wear off, then all of these symptoms just explode like crazy. And it gets worse after each injection when the meds wear off. It's just like when I have a lupus flare and every time I taper down on Prednisone, all my symptoms come back. One other thing, too...before I had spine surgery, my surgeon clearly told me that it would not help my arthritis, and in fact, my spine oa might get worse because there would be alot more pressure on my spine (since I had a 3 level laminectomy, foraminotomies, and something else I can't remember). I just seems to me like it's all stemming from my spine somehow. At least my Pain Management is trying to work with me on it. I would get another ESI in a heartbeat, except I cant afford the co-pay right now.
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