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Posted 8/16/2013 4:34 PM (GMT 0)
Hi,

I am new here, and haven't yet been diagnosed with Fibromyalgia, however, as this "whatever" continues I have decided to be "evaluated" for Fibromyalgia. I have had multiple diagnosises, Lupus, MS, RA, etc. But, as time passes, and blood testing has improved, the only one left is Multiple Sclerosis. A recent MRI shows "nothing new", but the pain, the symptoms, continue and are getting worse. I am not getting any relief from the treatment. Something isn't right!

The first relief I have had was when I was given a nerve pain medication for the Shingles, Gabapentin. I noticed it helped the body pains also. Oh, it doesn't do much but take the edge off, but it has provided me with HOPE! Sometimes I feel crazy but not from depression, just as a way to get some relief from the pain, and get some real sleep.

Crazy thing is, once rested and having the pain at a tolerable level, I can do things like everyone else, even go to the mall with my daughter, but, I pay for it for several days to weeks after. I went to the school's open house last evening and today my body actually hurts to touch it! It feels like all of my nerve endings are rolled up into one big mass of pain and being grated like cheese from the outside sounds, light, heat, OMG, just everything! I shouldn't even be writing this, just wondering if I am alone, or does anyone out there understand this craziness??

Post Edited By Moderator (Sherrine) : 8/16/2013 12:39:28 PM (GMT-6)

Posted 8/16/2013 5:22 PM (GMT 0)
Yep, sounds familiar. Irritating, isn't it?

If your current meds aren't helping, then you clearly need to try something else. A diagnosis is the first step. FMS doesn't totally go away, even with the cleanest lifestyle and best treatment. But it can be managed, even effectively.
Posted 8/16/2013 6:38 PM (GMT 0)
Hi, CrystalRaynne, and welcome!  Nope, you are not crazy!  Yes, this sounds all to familiar.  We totally understand what you are saying because most of us have been through the same thing.  The problem is that you haven't found...or even started to find...things to get the pain under control.  Once you are diagnosed then that's the next step.  Your doctor is doing everything correctly.  He is ruling out other illnesses that have many of the same symptoms as fibro.  They have to do that since fibro doesn't have a good test out yet to use for diagnosis.  We've all been there...tested and everything comes back normal but we feel anything but normal.  But, believe it or not, you can have a full and enjoyable life in spite of this illness!

 

I use ibuprofen with food, Tylenol, malic acid/magnesium supplements, vitamin D3 Supplements, and a muscle relaxer to help with pain and fatigue.  I also do a daily gentle exercise.  I walk and/or swim.  Yoga is another good one for fibro.  I also pace myself when doing things. 

 

Be sure to read Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot there.  The doctors now think this is a neurological problem and there is an excellent interview with Dr. Clauw, who is one of the leading doctors studying this illness, when you first open Fibro 101.  Other good starting links are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  You just might see yourself there.  Also, there are links about the supplements I mentioned and how they work in your body. 

 

I'm looking forward to getting to know you better.  Don't hesitate to ask question because we are here to help you.  Hope to hear more from you soon.

 

Sherrine

Posted 8/16/2013 10:08 PM (GMT 0)
You're not crazy. I have the same problems, and more. I thought I was crazy at first too, until I found this forum and found there were many other people who get exactly the same symptoms as I do. As if we would all be imagining or hallucinating the same set of confusing symptoms?! There must be something causing it that doctors haven't identified yet.

There are many things you can try to see if they help to relieve your fibromyalgia. You will find an abundance of treatment ideas on this forum, as well as people going through some of the same stuff that you go through. One thing that is frustrating about treating fibromyalgia is that there is no set treatment regime to fit everyone with the condition. Rather, there are a variety of treatments to try - and it's up to you to design your own management strategy. Basically, you hear about a treatment that may help to ease your symptoms. So you try it out to see if it helps; if it does, you continue to use it, and if it doesn't, you know that particular treatment won't work for your body. Over the years I have gradually developed a array of management techniques that help me to manage the conditions I have. But be cautious of scams: lots of people love to play on the fact that we're desperate to not be in pain and to have energy. These scammers just want to make a quick buck off of a suffering person - so make sure there is some kind of scientific evidence backing up treatments you may try, or anecdotal evidence from a friend you trust. My advice would be to start looking into the natural treatments first, such as neuromuscular massage, moist heat, trigger point therapy, magnesium, occupational therapy...

I hope you get an accurate diagnosis and a caring, thorough doctor.
Posted 8/18/2013 2:53 AM (GMT 0)
I know exactly that pain that you're talking about. It felt like part of my body had the flu, down to elevated temperature and pain in just that area. So far I am able to control it by eating less bread like foods and making sure I get enough sleep. I'm not a mom so this one might be hard for you to implement, but when you have that inkling of 'I'm tired' just stop what you're doing and go rest. And don't feel guilty. Yes, your dishes may pile up but so what. Do you want a sparkling kitchen or do you want stamina? I have had to make some changes in my life and they all equate to nurturing myself, which we should all do anyway.

PM me anytime if you want newbie advice. I'm just getting diagnosed after 7 months of absolute confusion and pain. I know where you're at! :)
Posted 8/18/2013 4:50 AM (GMT 0)
Hi Crystal.

I like your description: "It feels like all of my nerve endings are wrapped up into one big mass of pain and being grated like cheese from the outside sounds, light, heat, OMG, just everything!"  That's me, too.  

The first time I remember sound bothering me was during my first pregnancy....we went to a party, and the music really hurt my ears. It didn't seem too loud to anyone else. I had to go lie on the bed where everyone's coats were and stick my head under them....everyone thought I was nuts!  Another time I had to leave a concert we'd paid good money for in tears. 

Now I'm half deaf...and still sensitive.  I'm always the one to turn the tv up because I can't hear the dialogue, then down when commercials start blaring.  My family will just sit through commercials like they're nothing, which drives me nuts (why subject yourself when there's a mute button?!)  shocked It's like there's a loud and obnoxious telephone sales pitch taking place right in my brain!  Argh!!


I take Gabapentin for nerve pain, too. It helps me somewhat.

Have you been definitely diagnosed with MS? If so, do you know which of your symptoms are being caused by it? I know sometimes it's hard to differentiate between it and Fibro...

As Jasmine said, I hope you find a really good doctor, one who cares enough about you to get it right.  And I hope you'll keep posting here.  We delicate people (I hate being delicate!!) have to stick together! wink

Debbie

Posted 8/18/2013 4:14 PM (GMT 0)
Welcome

Already other members have made good responses & more will.

Your description is why 'others' sometimes think we 'fake' symptoms.. we might do some 'normal' activity today so are perceived as OK..
But those 'others' do not feel the pain that is our payment for participating in that 'normal' activity... you can read many post about that on here.

Blessings
Posted 8/18/2013 4:23 PM (GMT 0)
Welcome Crystal :) I've had Fibromyalgia and severe IBS for 27 of my 49 years, so I KNOW your not crazy ! And while you do still need to get a diagnosis to be sure, many of your symptoms sound like classic Fibro to me.

When 'myself' said > FMS doesn't totally go away, even with the cleanest lifestyle and best treatment. But it can be managed, even effectively. <

Kind of. I'm the first to admit I have not beaten my Fibro.... But I have knocked my symptoms down by literally 95% ! And although I do not believe I have beaten my IBS, I have put it into 100% remission.

I never have any "all day" or "life altering" problems anymore. Just enough little random, oddball stuff like.... occasional stabbing nerve pains, or feeling cut, or extreme itching in one spot, like I was bit by something, etc, etc. to let me know I still have it. I call these healthy reminders, as I truly believe if I ever went back to living like I did for most of the rest of my life (eating horribly, and zero exercise) all of my Fibro and IBS issues would come back withy a vengeance !

Oh, and BTW, I don't believe for one second, that eating horrible or lack of exercise, had "anything whatsoever" to do with me getting Fibro in the first place..... But for myself, diet and exercise have been the key to knocking my symptoms WAAAY down !

Best wishes,
Fish
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