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Regular Member

Date Joined Nov 2009
Total Posts : 23
   Posted 8/2/2010 3:37 PM (GMT -7)   
    Hi Everyone
  I'm new to this forum, I've been on the ms forum since november trying to find out info about my symptoms. I've been sick since Sept of 2009. Didn't really consider Fibro because I'm not experiencing joint pain or the pain when someone touches you. I've had MRI'S, CT scans and a spinal tap that they say have come back normal and ms has been ruled out.. and they are saying most likely I have Fibro. I've been trying to research this but am not really finding alot of info on it so I thought this would be a good place..
  I've been having alot of muscle pain.. everywhere.. numbness, tingling, electrical pain... everywhere, tremors in my hands and muscle spasms.. I guess.. in my back that make my upper body jerk about.. especially my arms and neck. I've been using a cane to walk since the end of March because my legs feel weak and wobbly. I get tired very easily now too and whenever I try to do anything the jerking gets really bad and I have to stop.
  They put me on Vitamin D and citalopram just recently and was told it would take a month to kick in, and they told me to see a rhuematologist. I've heard that Fibro symptoms can be different for every person, but I'm not sure if this is what I have. I don't feel stiff and sore when I wake up, and I don't have the soreness when touched, although I do have arthritis in my spine and other parts of my body. I used to get stabbing pains everywhere but now it's been burning pain.
  Hope someone here can give me some info and incite into Fibro !!
I gave you a subject line! 

Post Edited By Moderator (Sherrine) : 8/3/2010 9:27:11 AM (GMT-6)

Veteran Member

Date Joined Jun 2010
Total Posts : 554
   Posted 8/2/2010 5:21 PM (GMT -7)   
Welcome, Abbeygirl. We're glad to have you here - although we're definitely NOT glad that you're feeling so badly and that it might be fibro. This is a very warm and welcoming group of people - and we've become like real family. So please feel at ease here. You're among good people.

One of our moderators, Sherrine, put together a superb resource called Fibro 101. It is the top post in this forum, but you can click here to go right there.

What you're experiencing sure could be fibro - it is a syndrome - meaning that there can be big differences between the symptoms any two people experience.

Within that Fibro 101 post - Sherrine talks about deficiencies in certain elements (vitamins, minerals, etc.) This might not sound like a big deal - or like you could have severe symptoms from being deficient, but you can. It can be incredibly life changing when you get the proper amounts of things. I had terrible twitches when I began with fibro - then it left - and recently it came back. When being told I was deficient in potassium by my doc, and getting more potassium, the twitching has stopped once again. So please, see if any of this might apply to you.

I will leave off there. The others will be here soon to give more advice. I'm online a lot today so I just got here first.

Wishing you much better days.
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

it's a new day
Regular Member

Date Joined Jan 2010
Total Posts : 105
   Posted 8/2/2010 6:26 PM (GMT -7)   
Welcome - it sounds like fibro to me too.
Ask all your questions here. We'll try to help as much as possible.

Veteran Member

Date Joined May 2010
Total Posts : 1556
   Posted 8/3/2010 8:19 AM (GMT -7)   
Hi Abbey and welcome to our fibrofamily. I agree that seeing a rheumatologist is a good idea. They are the best ones to determine if it is fibro or not. I do think that alot of the symptoms you described do go along with what alot of us are dealing with. I would have severe muscle spasms at night in my legs for a long time until a friend told me about taking magnesium to help with the spasms. I still get them but not half as often and now they are not as severe as they used to be. Being tired alot also comes with fibro. Yesterday I ended up sleeping most of the day. It was just one of those days where I had no energy. Im hoping today will be better.
You have come to a great place for support, there are so many wonderful people on this board. It is amazing how much love and compassion they all have.
I hope you get some answers soon. I know how frustrating the unknown can be.
Gentle Hugs
DX: Fibro, Gerds, COPD, Osteoarthritis, Osteoporosis, High Blood Pressure, and Depression.
When I get where Im going dont cry for me down here. (Brad Paisley & Dolly Parton)

Forum Moderator

Date Joined Apr 2005
Total Posts : 17556
   Posted 8/3/2010 8:38 AM (GMT -7)   
Hi, Abbey, and welcome!  The muscle pain, twitches, electrical feelings, fatigue, etc. are symptoms of fibro but can be symptoms of other illnesses too.  These definitely need to be ruled out before a diagnosis of fibro is given.  It looks like you are on the right path to a diagnosis!  There is a thread on Fibro 101, that Chick mentioned, called What Else Could It Be and it lists other illnesses that have many of the same symptoms as fibro.
Most of us wake up very sore and stiff.  If you sit or lay too long with fibro, you will be stiff as a board and have more pain.  We can have pain most anyplace on our bodies but most have upper back, shoulder, and neck pain...along with more stuff.  I've never had tremors and I don't believe they are part of fibro.  You possibly could have fibro and something else because many of the symptoms you mentioned definitely sound like fibro.  There is also a list of symptoms in Fibro 101 and you just might see yourself there.
I'm glad you are going to see a rheumy.  Get a good one and one that treats fibromyalgia patients.  Believe it or not, there are still doctors out there, including some rheumies, that still think this is all in  your head.  If you don't get satisfaction there, you might want to see a neurologist.  We have several members that see neurologists, too.  I'm not a doctor but this is what I would do in your situation.
I know this is a frightening time for you but I have lived a full and enjoyable life in spite of fibro and the other health issues I have.  We are here to help you.  Just keep searching and you will find the answers. 
I'm really happy that you popped over here.  Don't hesitate to ask questions 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

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 8/3/2010 8:47 AM (GMT -7)   
Hi Abby, not all docs are familiar with fibro, so it is really important that you
find one who is. I see a rheumy who is experianced with fibro and connective tissue
diseases. Bloodwork should be done to rule out CTD's because there are symptoms
that are the same. Getting a Dx sure can be frustrating, because of all the testing
and waiting...but in the end a correct Dx is important so that you can get the right
treatment and find some relief. Wishing you the best of luck!

hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements

Regular Member

Date Joined Nov 2009
Total Posts : 23
   Posted 8/21/2010 12:57 PM (GMT -7)   
  Good Afternoon Everyone... Thank you for all the replies.
  I've gotten some blood work results back that show my vitamin D level to be very low and also mild inflammation?? I started taking the vitamin d on july 23rd and went for the blood work 2 weeks later... does it take awhile to get into your system? Now they're sending me for the blood work again. Saw my doctor last week and he says my symptoms don't really fit with fibro and I tend to agree with him, but he's refered me to a rheumatologist and I will see him on October 15th. So I will wait to see what he has to say. My doctor took me off of the citralopram because my tremors had become very bad and I was having a hard time functioning, and he put me on clonazepam for them. they have calmed a bit but not gone away. At my doctors visit he really shocked me by asking me if I had any trauma in my life like physical or sexual abuse. He says this type of abuse can maniifest itself years later  even tho the person may have blocked it from they're memory ??? If I have blocked memories of abuse I certainly don't want to remember them now anyway.. and no... I don't believe I was ever abused that way. I think he thinks because they can't find anything wrong ..I must be a whacko....
  Just want to share with you  my first attack and maybe find out if any of you experienced something like this... sorry for the lenght of this..
  Had been having pain in my feet for about 2 yrs that eventually led to electrical shocks going up my legs... stabbing pains in my feet and legs and then numbness and tingling all the way up my left leg to my waist.
  The weekend of the attack my legs were numb and tingly and I could feel the numbness in my lower back and stomach. I went to the ER. I was having muscle spasms in my abdomen and it felt like my intestines were straining... very strange... when the numbness went away I started having stabbing pains everywhere in my body, and I was having tingling on the top of my head, my forehead, and right cheek, my lips felt numb and numbness under my chin. They set me up with a neuro that day. When I went home I was totally exhausted and sick for 8 weeks. The pain kept coming back every night, and it would start all over again. During this time I was very weak. I sometimes could barely walk and even showering was exhausting. Sometimes when the stabbing pains went away I would feel like that part of my body had had a major work out and the muscles would be sore for days. I also had a couple of episodes of flashing lights in my peripheral vision and black wavy lines and blurred vision.
  Thanks for listening... I'm just concerned that they may be leading me to the wrong dx.. 

Regular Member

Date Joined May 2010
Total Posts : 200
   Posted 8/21/2010 2:01 PM (GMT -7)   
Hi Abbey, I'm sorry to hear about all of your symptoms!! You have had quite a hard time lately. I am waiting on a diagnosis as well, and I, too started with the neurological symptoms. So, I started off with a Neurologist. The first thing he did was prescribe a blood test and set up an MRI of my lower back. Blood test all came out fine, but the MRI showed a prodruding disc in my lower back. But I was still having tingling in my hands, and muscle twitches all over my body, plus, weird crawly feelings in my head (not sure how to describe it). Also, the heat made my symptoms worse (and still does) which is supposed to be a major indication of MS (plus my Aunt has it) so he had me get a brain MRI..... and that came out normal. So, I was scratching my head wondering what it might be..... the doctor said that the lower back disc should not be causing all the symptoms in my upper body.

So, fast forward to now, and I finally got a referrel to a Rheumotologist. Now, most of my neurological symptoms have went away and I mostly deal with chronic pain and fatigue. Once in awhile my hands and feet feel tingly, but not as often, and I just get occasional muscle twitches.

I wanted to let you know that part of what you could be experiencing is siatica.... do you have a herniated disc too or just arthritis? I am not too familiar with arthritis of the spine.

I am glad you have an appointment. I am anxiously awaiting mine. I really want to get to the bottom of this! I think the waiting and wondering what is wrong is the worst!

I can understand your frustration and nervousness about getting a correct diagnosis. Also, another thing I was wondering, was if sometimes it can be too early for lesions to show up. How long have you been having your symptoms? If you end up not having fibro and your symptoms continue, you might want to get another brain MRI maybe a year from now. those are just my thoughts.

I can't believe the doctor asked you those questions! How absurd! Sounds like he doesn't know much.

These are a wonderful bunch of women (and a few men) Please don't hesitate to stick around!


Regular Member

Date Joined May 2010
Total Posts : 200
   Posted 8/21/2010 2:07 PM (GMT -7)   
I'm sorry, I already found the answer to my question about how long you have been feeling this way... since Sept. 2009... I had forgotten what you said!

Regular Member

Date Joined Nov 2009
Total Posts : 23
   Posted 8/21/2010 4:20 PM (GMT -7)   
  Hi Kellie
Thanks for your reply :)
  An x-ray first showed that I have degenerative disc desease in my spine. The mri's showed that I have broad-based disc protrusions and tearing of the discs. I have mild osteoarthrosis all throughout my spine. I know it sounds bad but my back pain isn't that much of an issue to me... lol..
  My brain mri showed 3 to 4 deep white matter lesions.. which they say, the finding were likely related to remote injury...???
So you are right ... my doctor also said if things don't get any better that retesting should be done in 6 months.
  Funny tho I've also had the creepy crawlly sensation at my hairline on my forehead and that is where one of the lesions is.
 Hope all goes well for you at your rheumatologists... the waiting and wondering is the worst part, not to mention the doctors who look at you like you're wasting their time... err...
Would like to hear back from you if you find anything out.
Take care

Veteran Member

Date Joined Apr 2008
Total Posts : 1522
   Posted 8/21/2010 7:23 PM (GMT -7)   
Have you been tested for Lyme Disease? I had a lot of your symptoms; creepy crawlies, tingling, severe fatigue, tremors, spasms, weakness. Most of these symptoms went away after being taking antibiotics for Lyme Disease.

The test is terribly inaccurate, many people test negative then are told they can't possibly have it when they actually do. Go over to the Lyme forum and read up on it.

Regular Member

Date Joined Nov 2009
Total Posts : 23
   Posted 8/21/2010 11:47 PM (GMT -7)   
  They wouldn't test me for lyme because I don't live in the right area to have been infected by a tic...... hmmmmmmm

Regular Member

Date Joined Apr 2010
Total Posts : 442
   Posted 8/22/2010 1:19 AM (GMT -7)   
Abbeygirl, have they tested you for an adrenal gland tumor (or pheochromocytoma)? My mom had a lot of the same symptoms and she was tested and did have two adrenal gland tumors, but they watched them on serial CTs and they didn't grow. However, I really got the impression that they didn't do a lot for her in follow up because of her advanced age. After reading some of the symptoms, I am convinced that my sister (now deceased) had this disease.

Regular Member

Date Joined Nov 2009
Total Posts : 23
   Posted 8/30/2010 10:22 AM (GMT -7)   
 Wow...thats scarry.. I'm sure he hasn't tested me for that... I did google it and yes I do have alot of those symptoms... Is that what your sister died of.. sorry for your loss.
  The second blood test for vitamin D came back very low again so my Doctor is putting me on 50,000 Ui a week......... WOW... thats alot. Since I stated taking 4000 ui a day in July tho I am feeling a bit better. I'm not as weak as I was before but still wobbly legs, slight tremor and dystonia in my neck (just found out the medical word for neck jerking) Still having some pain too. Last night had a weird electrical pain around my hip bone area and then this morning had a cobweb feeling on the right side of my face... have never had either of these before..
   I'm really excited tho about not feeling as weak as I was, I'm starting to feel a bit like my old self again and am hoping that I'll be able to go back to work maybe by November. I did read tho that vitamin D defiecency can be a sign of an autoimmune disease. So I might not be out of the woods yet... Can Vitamin D defiecency cause these types of problems by itself or is it an indication of something else going on.. 
   Hope you are all having as good of a day as I am.... ♥

Regular Member

Date Joined Aug 2010
Total Posts : 171
   Posted 8/30/2010 5:07 PM (GMT -7)   
Abbey so sorry your having a tough time with this. One suggestion I would also make is get your eyes checked by an ophthalmologist (not an optemetrist) You would be really surprised by what illnesses and diseases can be seen in your eyes. Also the flashes and blurred vision need to be checked. Hope you get some relief soon!

Dx: Fibro, HTN, Depression, IBS, Lupus like symptoms

"The Lord is close to the broken hearted and He saves those whose spirits have been crushed" Psalm 34:18

Forum Moderator

Date Joined Apr 2005
Total Posts : 17556
   Posted 8/30/2010 6:05 PM (GMT -7)   
I am having a hard time believing that they won't test you for Lyme disease.  That should be ruled least that's what I've been told.  You can find Lyme disease in nearly every state in the US.  I think I'd get a second opinion on this.
Forum Moderator/Fibromyalgia
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7
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