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Posted 4/22/2015 9:37 PM (GMT 0)
Hi Guys,
I am really asking for help and support and what I should do next. I was recently diagnosed with Fibro a few months back by a rheumatologist but my symptoms seem more neurological to me. I am also under a neurologist and had an MRI of the brain and cervical spine done 2 years ago which came up negative for lesions. My current symptoms are tingling and numbness around different parts of my body but predominantly my hands and feet (in between my toes and or souls of feet) I also have this feeling in my throat that is unnerving – it’s like a lump feeling but it isn’t affecting my swallow etc. I have a feeling of numbness on the left side of my face and sometimes concentrated to my lips.
I have had these symptoms now for a few months (with a few weeks here and there relatively symptom free)
I am 34 with two young kids an amazing husband and fab job. This is really starting to upset me and I really don’t know where to go from here. I can’t continue like this and really don’t know where to go.
I would like to also add I went back for a repeat MRI a few weeks back (just of the brain) as a routine follow up and again lesion free. The neurologist has put me on Topamax as I suffer with migraines with aura and recently had a bad few months with these.
Any ideas/suggestions?


Thanks a million in advance
Posted 4/22/2015 10:51 PM (GMT 0)
Hello there!

You sound a lot like me. I'm 37 and have had fibro for almost 2 years now. Most of my Fibro symptoms are neurological. I DO have pain but mostly neurological symptoms more than anything else. I get tingling and numbness that travels all over. I also get occasional nerve pain in my toes. Before all this started I was perfectly healthy and had never had any health issues. It has been pretty traumatizing for me but I'm learning to manage it. My husband (like yours) is also very suppprtive and that helps a lot. I still work too and I feel like going on with my life definitely helps with my symptoms too.

This is a great group! Very helpful and supportive! Just remember that everyone may experience Fibro a bit differently. I also don't deal with the severe fatigue that many people who have fibro do. My fibro seems to effect my nerves more than anything else.
Posted 4/22/2015 11:10 PM (GMT 0)
Hi Makeupmama,

Welcome to our forum. So sorry to hear what you're going through. My fibro is neurological and physical. Due to a lower back injury 15 years ago, my entire body gradually went numb. It began in my upper legs and spread over the next several years. The doctors figure my numbness is due to a pinched nerve or nerves.

I try to see my numbness and my occasional tingling and muscle spasms as a blessing because my doctors are surprised that I'm not in more pain than I already am due to my back injury. I've experienced help with a good chiropractor for my pain and a massage therapist who also does cranial work.

In the meantime, do all that you can to take great care of yourself. There's a lot to learn and you'll learn a lot in here.

Good luck to you.
Posted 4/22/2015 11:35 PM (GMT 0)
Doctors are thinking fibro IS a neurological problem. We have the tingling, some have numbness. I have both. I will sometimes have hot or cold feeling spots but when I touch them they are the same temperature as the rest of my skin. I will feel like my skin is wet in spots when it really is dry. I've felt like a bug is crawling on me or water is running down my leg but of course that isn't happening either.

The lump in the throat could be muscle spasms or just plain old anxiety. If you get busy and are focusing on something else I bet you don't notice the "lump" feeling. A few times I couldn't swallow! Now that is frightening! But my doctor said it probably was muscle spasms that caused it and I'm sure he was correct because it went away. I did learn that when it happened I would cough and then I could swallow. Plus I would focus on other things and not think about it and then I was fine. The mind can do so weird things.

Do read Fibro 101...the first thread on the forum. The first link is to an interview with Dr. Clauw, a leading researcher for fibro and he explains quite well what they think is going on. This can help you understand better what is going on. Knowledge is power.

Meanwhile, try not to worry. That's stress and that causes more pain. It sounds like you have good doctors. I hope this helps you. Feel better soon!

Sherrine
Posted 4/24/2015 1:23 PM (GMT 0)
Thanks so much for your replies. It's reassuring to know that others are experiencing similar.
Posted 4/24/2015 4:42 PM (GMT 0)
Hi guys,

Is there a way to message a member directly instead of posting a thread?
Posted 4/24/2015 5:31 PM (GMT 0)
Hi Abundance, if you click on a members name it will show you there email address if they have one listed.
Posted 4/25/2015 5:39 AM (GMT 0)
Do any of you experience a kind of weird twitching in your leg muscles and a feeling of weakness? It makes me edgy and very irritable. One doctor said I had restless leg syndrome BEFORE he had even read my chart or examined me. He put me on a Parkinson's med which did zero....I'm 3 years into the twitching...thanks for any help
Posted 4/25/2015 4:18 PM (GMT 0)
Hi Libbsis, I get the odd muscle twitching but nothing too major. I have never heard of Parkinson's meds for fibromyalgia. Maybe some of the other guys will be more useful for you. I hope you find some answers
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