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Does this rule out fibromyalga?

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Posted 2/1/2018 6:17 PM (GMT 0)
Multiple specialists have worked for 3 months to diagnose my illness... I an having EMG testing next week.
Everything points toward fibromyalgia EXCEPT:

The pain never ceases. ANY activity increases pain, fatigue and weakness... "light exercise" does NOT help.

I need some wisdom... short term leave is about to run out with my company which will leave me jobless at 52.

Stats: Female, 52, living alone, symptoms have continuously gotten worse since November.
Posted 2/1/2018 11:41 PM (GMT 0)
Hello, TjTN1,

Welcome to the Fibro forum, where everybody knows your pain ;) Seriously - I understand you don't feel like laughing at the moment, but we really do understand.

I can't speak for anyone else, but what you describe sounds just like me, and I think, many others who have been diagnosed with Fibromyalgia. I keep walking, to the very small extent I can, 1) for some cardiovascular benefit, and 2) because it reminds me I'm still alive. But I've long since given up the idea of exercise actually making my Fibro better....every movement here means leaving out a movement there. And I'm someone who used to LOVE exercise!

So I feel for you.

Did you notice our first thread on the list, Fibro 101? It's full of helpful information. And I'm sure others will be on to give their input soon.

Debbie
Posted 2/2/2018 12:37 AM (GMT 0)
Thank you Debbie - thank you, thank you. Sometimes when I attempt to describe what I am feeling to physicians, friends. Family... I feel like I am going crazy - or that they probably think I am.
Thank you for someone else saying, "I get it" <3
Posted 2/2/2018 11:29 AM (GMT 0)
Hi Tj,

I know what you mean when you say that it is hard for others to understand what we're going through. That is what is so nice about this forum. We all understand. Especially those of us who have been dealing with it for a lot of years.

When it comes to helping yourself, light exercise might not feel as if it is helping but it does. I do stretches and exercises religiously twice a day so my muscles do not contract. A physican told me years ago that I have semi-contracted muscles. He said I would need to keep up the stretches and exercising. Also gaining weight is harder on us. So I do short walks a few times a day, I try to stay as active as possible and not sit for too long, and I try to eat healthy at all times. I've found that eating foods that don't agree with me make me feel worse and I have a tougher time sleeping.

Allergies seem to play a part with my fibromyalgia. I've become very sensitive to chemicals and pollution.

I also see a very good chiropractor who uses the COX method and a very good massage therapist.

Good luck to you.
Posted 2/2/2018 1:56 PM (GMT 0)
Hi, TjTN1 and welcome! The way Fibro affects people is different for everyone. The one constant is we have pain in all four quadrants of our body that has lasted at least many months. Most have cognitive memory problems too. Then you can add a myriad of other symptoms that some have and some don't! It's a crazy illness and doctors still don't know what is causing it. They think it's more a neurological problem.

If you haven't seen a good board certified rheumatologist I would suggest you do. You could take your test results that you have had with you. They might want to take a few more tests. You need to have other illnesses that have many of the same symptoms as fibro ruled out...things like lupus and Lyme disease. There is no good test for fibro.

Make sure the doctors you see believe that fibro is a true illness. There are still doctors out there in the Dark Ages when it comes to this illness. Quite a few of us have been told it's all in our heads! NEVER let a doctor tell you that. Head straight for the exit. Some of us have been sent to psychiatrists! Fibromyalgia is recognized by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, and the World Health Organization...just to name a few. So don't let anyone say it's all in your head!

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.

It will be 31 years in April since I came down with fibro. I have had plenty of ups and downs but now I'm better than I was when I started this journey. What works for one doesn't necessarily work for another. It's a trial and error type thing. I use ibuprofen with food, Tylenol, vitamin D3, magnesium malate, and a muscle relaxer called Robaxin (methacarbomol) that has made a significant difference in my pain. There are links in Fibro 101 about the supplements and how they work in you body. Through my rheumy I found out I also have ankylosing spondylitis which causes a ton of pain also. The muscle relaxer has been a huge help. I also walk daily and pace myself when doing things. All of this helps with fibro.

I have had a full and enjoyable life in spite of this illness so I know you can too. Just find what helps you be in control of the pain and don't stress over it! That causes more pain.

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

Sherrine
Posted 2/2/2018 5:39 PM (GMT 0)
TjTN1,

Yes, it really is hard to explain to people because so much of what we have to do to have any quality of life at all flies in the face of everything popular culture tells us.

As you can see, even those within the Fibro community have a wide variety of abilities and coping mechanisms. That just makes it even more confusing! What helps one may not help another.

It's a pretty isolating experience. I've had Fibro for at least 30 years (diagnosed for about 26 of them) and still, no one in my immediate family really gets it. My youngest, who has her own significant physical problems, is by far the most understanding and knows I'm not exaggerating. She started in an Occupational Therapy program last Fall. She says having a mom with chronic pain was part of the reason for her decision to go for a career in helping people with physical problems.

Do you have anyone in your life who is supportive?

Hope to see you around more.

Debbie
Posted 2/2/2018 7:33 PM (GMT 0)
First, I cannot thank you all enough for the wisdom and support.

Symptoms started 3 months ago with joint pain. Rheumatologist said no inflammation see neurologist. Neurologist said I needed to see the ONLY Dr in Nashville TN who does EMG testing (muscles) because muscle involvement has rapidly increased. I have waited 6 weeks to get the EMG testing next week, and then it could be a couple of months before I then get in to see that specialist.... by that time, short term leave will be out and my job will be gone at my company...

I feel helpless as I can do nothing until someone "names" this. My PCP thinks it is,
Fibro, but she must allow specialists to go through and determine everything it isn't - which I understand.
The hardest parts:
1. Not knowing what my future will look like - the complete fatigue and pain keep me from working, and,
2. Because they have yet to diagnose it, Cigna has my leave "pending" so no money coming in..

I feel trapped in a system and unsure of my future...

This forum is the first time I have not felt completely alone.

Thank you all...
Posted 2/2/2018 9:32 PM (GMT 0)
Try some of the over the counter things and see if it helps. I do take ibuprofen but have to take three tablets at a time for it to help. Right now I take it every 12 hours but I used to have to take it every six hours around the clock...until I got the muscle relaxer. Sometimes I add Tylenol too.

The vitamin D3 could make a difference since a deficiency in that can cause more pain. The same goes with magnesium. Magnesium malate is easier on the digestive system plus some studies have shown that this type of magnesium (it has malic acid in it) helps fibro patients. Try to walk daily as your gentle form of exercise and do some stretching exercises too. None of this can hurt you but could help get you feeling somewhat better and be able to hold on to your job. Sitting around waiting for a diagnosis can be a long procedure and would make you lose your job. We do have to advocate for ourselves. Do talk to your PCP about doing this.

Sherrine
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