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New here and desperate for some advice.

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Fibromyalgia
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Posted 11/13/2014 1:01 AM (GMT 0)
Hi, I am new to the forum and looking for some advice. I am a 34 year old mum of 4 who was diagnosed with fibro in my early 20s after years of unexplained pain and other problems. I was prescribed amitriptyline and other than the odd flare up (lasting a couple of weeks max) I felt that I was still able to live a reasonably full life.

In may this year I had my fourth child and things have gone downhill ever since. By July I was experiencing a host of neurological symptoms, none of which I have ever had before. These included pins and needles in hands and feet, tremors, burning/numbness and a sensation that my whole body is vibrating especially at night. I also feel like every joint/muscle/part of my body hurts particularly my neck and back. This has now been going on for 5 months and feels worse than ever.

I have seen a neurologist last month who said he thinks it is all coming from my fibro but will send me for a brain scan to rule anything else out. I still don't have that scan appointment through and feel like they haven't viewed it as a matter of urgency.

These symptoms are having a huge impact on my life right now. I feel terrible all of the time and with four children (3 of which are 2 years old and under) I feel it is affecting my time with them also. I have resorted to seeing a chiropractor privately while I wait for my scan and she says my neck and back are twisted and this is all affecting my nervous system. My anxiety levels are through the roof with the uncertainty of all this.

Basically I just want advice - is any of this typical of fibro? Can one develop neuro symptoms despite never having experienced them before? Is it possible that none of this is fibro and is infact something else altogether?

It's 1am in the morning and the vibrations are so strong I can't even sleep. Thank you so much for listening. Xx
Posted 11/13/2014 1:31 AM (GMT 0)
I have every symptom you listed and more, the burning and pin and needles especially in my legs and feet drives me nuts and I'm beginning to think it is neuropathy and am going to get a referral from my dr to see a neurologist to get testing done for it. However, I know most of what you listed and for me it is the fibro. I don't feel the vibrations though, but I've read a few post where people have listed it.
Welcome to the group, I'm new too. :) Hopefully you can get some rest tonight.
Posted 11/13/2014 1:32 AM (GMT 0)
I was actually just like you. I did nothing differently after I found out I had fibro for five years. It seemed like all of sudden everything happened at once just like you explained. Hope you get your scan soon.
Posted 11/13/2014 7:19 AM (GMT 0)
Hi, LJ. Welcome to the forum. Sounds like you're having a heck of a time!

I would say the new problems you're experiencing could be Fibro...or not. I've also developed more weird symptoms and pain over the years, but then, I've been dealing increasingly with Degenerative Disc Disease and Sciatica, too. So it's hard to say what's causing what - wouldn't it be nice if there was a scanner they could run over us, like in the old Star Trek shows, telling us just that - what it is and what to do about it?!

We have a really good thread, "Fibro 101," that's chock-full of informative links on Fibro: possible symptoms, coping mechanisms, "What else could it be?" and many more. It would really be worth your time to check it out.

I hope you'll keep posting. This forum has helped me so much - just knowing there are others out there who really understand what I'm going through has made a big difference in my life. We keep tabs on and care about eachother, too....like a kind of family :)

Hope you're getting a good sleep tonight.

Debbie
Posted 11/13/2014 1:25 PM (GMT 0)
Hello!

I'm new here as well. I have all of your symptoms with my fibro. They all come and go.I will say that they are MUCH worse when my anxiety is bad. I have started swimming and taking yoga which seems to help. If anything it makes you feel better mentally and helps burn some of that anxious energy. I hope your flare passes soon. I'm just getting over a nasty one too.
Posted 11/13/2014 3:21 PM (GMT 0)
Thanks everyone, I'm really touched that you have all replied and I'm not alone. Last night was a very long night, I felt so scared what was happening to me as it all just seems to be getting worse. This "flare" has been 5 months now and that's really not normal for me. Does anyone else have flares that last THAT long?

I'm on 30mg amitriptyline so already on quite a high dose (started on 10mg) and have been on and off it through pregnancies so can't see that I have built up enough of a tolerance to cause all this. My doctor is actually pretty clueless about fibro and offers me paracetamol which is absolutely pointless!

Hopefully my MRI will come through soon and we will be able to work out if this is "just" fibro or something more. It's hard to decide what's the scarier option - finding something else or being told this IS just fibro and I have to live with it forever. I'm so tired of feeling this way, it's so debilitating :-( xx
Posted 11/13/2014 4:39 PM (GMT 0)
Hi, LJ, and welcome! I suggest that you find a doctor who isn't clueless about fibro. A good board certified rheumatologist that treats fibro patients would be a good start. You need a doctor that understands this illness and knows what they are doing when it comes to fibro. I use two doctors...an Internist and a Rheumatologist...and both are not only board certified but also understand fibro.

I have had very long flares, too. I do use over the counter pain medications along with magnesium malate, vitamin D3, and a prescription muscle relaxer, Robaxin, that had made a significant difference in my pain. I, like Debbie, am dealing with other back problems and sacroiliitis so all of this helps me.

Hope you get some good medical help soon.


Sherrine
Posted 11/13/2014 5:20 PM (GMT 0)
Hi, I am in the UK and so our health care system is slightly different. All referrals to specialists such as rheumatologists must be done through your GP and if your GP isn't clued up on fibro you have a real fight on your hands!!

I have read about the use of magnesium and B12 being helpful with fibro, is this something that many of you take? If so what kind of quantities should I be taking? Thanks again, this is all really helpful. Xx
Posted 11/13/2014 6:14 PM (GMT 0)
Magnesium malate is a good form of magnesium and more easily absorbed. I have all the info about this supplement and also vitamin D3 in Fibro 101...the first thread on the forum. This is an excellent thread filled with a lot of information...even things you can print out and show your doctor. Do read it. It will help you.

Sherrine
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