Newbie With Questions

Hello folks I've been lurking on this forum for a few months and finally got up the courage to register and post a few questions.

Just a little history: I am a 28 year old gal from PA and I was diagnosed with Fibromyalgia back in 2004. On the day the rheumatologist pronounced the diagnosis of Fibromyalgia he did it in such a way that caused me to seriously question his judgement in this matter. To this day, I'm not convinced that I have Fibromyalgia.

Anyway, down to my questions! This March I started getting tingling and electric-shock sensations in my right hand. I assumed it was Carpal Tunnel since I use my hands all the time at work and in my leisure time - knitting. I had a cortisone injection in my right wrist, but it did no good. The nerve test (EMG) also was negative for Carpal Tunnel! Soon my left hand began tingling too and in a few more months both feet started to do the same. Now my hands and feet tingle and throb CONSTANTLY, but it's worse when I keep them still. I often have trouble picking up small objects, holding anything for a long time, grasping tightly, etc. I have also been getting what I call "patchy goosebumps" on my arms and legs. It feels like there's something crawling on my skin and when I examine that area I have a patch of skin with goosebumps when the surrounding skin is 'quiet.' This happens very frequently in areas all over my arms and legs for several days in a row, then not at all for a few weeks. It usually happens when I have a headache (and headaches/migraines are very common problems for me too). I also have memory problems, aphasia, photosensitivity, incoordination, and lightheadedness that lasts for DAYS after a bad headache or a migraine (this is not something I've experienced before).

So far all my labwork has come back within normal limits (Glucose, TSH, B12, B6, Hepatic panel, CBC, Lyme antibody screen, ANA, Rheumatoid Factor, Sed. Rate) and I just had an MRI that was normal except for some minor sinus swelling and "low cerebral volume" (Are they calling me Bird-Brained?? lol! ). I have read that folks with Fibro can get some strange nerve sensations, but that has never been my "Fibro" experience. My supposed-Fibro has always been a terrible aching pain all over, but especially in my legs . . . never this constant tingling/throbbing (almost vibrating) and little electric shocks in my hands and feet. It is seriously affecting my ability to do my job and I was pretty surprised when my GP told me that I have lost 15 pounds in 4 months. I'm not exactly complaining about this . . . but it worried my GP when I told her that I have not been trying to lose weight, in fact I'm probably more sedentary than I have been for several years due to my recent hand problems. I see a neurologist in a couple of weeks, but since the MRI is normal I'm starting to wonder if it could really be Fibro and it's now manifesting in a different way.

I'd love to hear your thoughts and experiences! Thanks so much for your time!

-Jessie

Hi, Jessie.

Welcome!  You're just the age I was when I became afflicted.  I'm glad you found your way here.   We are a supportive bunch.

Have you read "Fibro 101," our 1st thread?  It has a link to possible symptoms that go along with this crazy condition.  There are a ton of them!  Of course, I'm no doctor, but what you describe sounds like it could definitely be Fibro to me. 

I have lots of tingling in my extremities, too - especially my legs and feet.  Part of that, I know, is disc damage.  But Fibro can also cause this.  There are a lot of possible causes.  Symptoms moving around - that comes with the territory, too. 

I've never heard of low cerebral volume.  What is that, exactly?  Actually, I have read that Fibro can cause brain atrophy in certain regions after a long time (that would explain me.)  Is that what you are referring to?  Or do you mean low blood volume in the brain?

I've lost weight, too, and now have trouble keeping it on.  This certainly wasn't true when I was younger.  And, like you, it doesn't matter whether I'm active or not.  My body just won't let me eat too much...it makes me feel sick.

Hope to hear more from you - hang in there!  

Debbie

Thanks for the replies folks! They tested my Vitamin D values in 2008 and they were normal. My GP did not feel the need to test them again this time. Low cerebral volume just means my brain is smaller than an average person's of the same sex and age. The doctor said it's nothing to worry about . . . I'm just "bird-brained" lol!

I have not read the Fibro 101 thread yet, but I think I'll do that tonight. I did read the list of symptoms on an external website and they do sound very similar to mine . . . they also sound very similar to a lot of other conditions though =/. I have done so much research on all the other conditions that I can think of because I'm just not sure that it's fibro . . . or maybe I just don't want to admit to myself that I may have, indeed, have it.

The thing is, I was virtually asymptomatic for several years between my diagnosis in 2004 and now. To me, that does not seem like Fibromyalgia. I had almost no Fibro-like problems from 2009-2011 and I have not been on any medications to control my fibro symptoms since 2008. I wonder why that could be?

Knitting is a passion of mine. It is how I wind down and center myself after the stress of my job. As of now, I have not knitted anything in a month (which has been terrible for my emotional wellbeing ) because I thought that might be causing the problems with my hands. So far the tingling and throbbing has not changed, in fact my hands seem to feel worse when at rest. I often feel the need to do something with my fingers to stop the incessant throbbing. My tingling and throbbing feet tend to keep me awake at night, so I've had to take Advil PM every night to get to sleep.

I asked my GP whether she thinks this could all be caused by Fibromyalgia and she did not seem convinced. I'll bring it up with the neurologist when I see her in a few weeks, but it seems like every time I mention my Fibro diagnosis to any medical professional, no matter what, every other problem I have gets dismissed as Fibro without further investigation. So I hesitate to say anything about it.

Ok, I'm really curious, does anyone else get the weird patchy goosebumps on their arms and legs? That really freaks me out sometimes!

Thanks again everyone! =D

Edited for spelling, doh!

The tingles and goosebumps are things I get also. It is strange because the goosebumps are just in one small area and I am not cold.

Wow! Thanks everyone for all the help and support! Y'all are awesome! >:D<

Glad to know I'm not the only one with the weird goosebumps thing! It's so distracting and creepy!

I saw a rheumatologist recently for the steroid injection in my wrist . . . when we still thought it was CTS. I haven't seen one for fibro recently though. I guess if everyone else is stumped I may get sent back to a rheumatologist again.

Thanks for the info on Magnesium, Sherrine! My chiropractor recommended a magnesium topical spray. It stings a bit, but it does seem to help with the aches, at least temporarily. I'll try to use it more than I do and see how that helps . . . oral Magnesium tends to give me intestinal trouble =/

Thanks again for all the excellent thoughts and encouragement!

Knits welcome! I was wondering if they checked your cervical area(neck)? You can get the symptoms your describing. I have fibro and a 3 level neck fusion. After surgery I was always blaming my Dr. that something wasn't right with my neck after surgery. He assured me it was good. It was after many years I put the puzzle together that I had fibro and it was causing my numbness and tingling.

I would be concerned with the weight loss. Do you suffer from depression? Please let us know how your neuro appointment goes. Feel free to ask questions. Maybe by reading post daily it can help figure out if you do have fibro. I benefited from taking magnesium vitamins. It took about a month to see results. It settled the muscle spasms down, especially in my feet.

Hi, I'm a newby. Was just checking the web for 'goosebumps' which led me here. Yes, I get this. Brief history......I was diagnosed with ME back when all that started in the 90s when they called it Yuppy Flu, and Royal Free Disease or thought it was 'all in our heads'. Anyway, this goosebumps thing began on my scalp years ago, so I could feel it but couldn't see it. Then one day I felt it on my arm, so then I could check it out, and yes, goosebumps that snaked down my arm, in a wavy line. Didn't tingle itch or hurt but felt exactly like goosebumps feel. It happens in different places, arms, legs, rear end, scalp. I also get another weird thing, I can smell smoke when there isn't any smoke smell anywhere. And if I get really bad I have trouble writing, my writing becomes quite large (and actually looks a bit better than normal LOL)I have three daughters who have all be diagnosed with FMS. There seems to be a lot of this about now.

Welcome knitsforsanity. Have you seen the report regarding the low cerebral volume from the radiologist? I have what is called Chiari 1 Malformation and it causes that. I also have disk problems in my neck that causes numbness and tingling. Just curious if you may have any of these problems. Hopefully you will get some answers when you see the Neurologist.