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Recently diagnosed and feeling hopeless

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Fibromyalgia
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Posted 7/21/2017 3:11 PM (GMT 0)
I've been struggling with chronic pain and fatigue for two years (pain all my life but it's worsened during this time). After enduring a host of different tests from various specialists, I have been diagnosed with Fibromyalgia, mostly as a result of not testing positive for anything else. Some of the specialists and doctors I have seen were not convinced I have fibro where others were quick to label it as such.

Whether its CFS, or Fibro, or not, it has taken a severe toll on my work life and my feelings of self worth. I graduated from university four years ago, I have not been in work long enough to qualify for CPP disability benefits, and the CRA disability tax credit requires that I have "life sustaining therapy" roughly fourteen hours/3 times a week - which I don't do nor could I afford to.

I realize that I'm not in as bad of shape as some sufferers. I can walk around the house and do simple things, but I get winded going up the stairs, sleep sixteen hours a day, have brain fog, fevers and chills, and an overall feeling of achey tiredness that sucks the life out of me. It's like having the flu 24/7. It seems as though in order to qualify for any kind of assistance you need to be near death... so I know I'm not going to qualify.

My husband supports me, I feel like I am a tremendous financial drain on our marriage. We have over twenty thousand dollars of combined student debt, I haven't been to work in months, and what's left in my bank account is slowly dwindling away.

I don't understand how anyone expects us to survive like this. I often feel depressed. There are no fibromyalgia support groups, pain clinics, or the like in my city. I'd have to travel four hours to get to one, and I don't drive so it'd put me out a few hundred bucks to do so.

I don't know where to go from here.

Post Edited By Moderator (Sherrine) : 7/21/2017 1:42:23 PM (GMT-6)

Posted 7/21/2017 4:25 PM (GMT 0)
So sorry for the way you are feeling. This disease is a life changer. It is hard to function day to day and even harder to work. I just got diagnosed as well but they still suspect an ai issue as well. My pain is not controlled but my husband and my 4 kids are a great help. One thing everyone suggests is to try to take short walks. Moving is supposed to relieve some of the pain and stiffness. I wish I could give you more hope of suggestions but I am just learning about this as well. Good luck and please keep us posted. We are here for you.
Posted 7/21/2017 11:52 PM (GMT 0)
Hi, RadioActiveGirl, and welcome! You do not have to feel hopeless. There is always hope in everything in life. I have had fibro for 30 years and have had a full and enjoyable life in spite of his llness. I do plenty of things to help myself feel better and I never give in to fibro.

You shouldn't be winded going up stairs. That isn't fibro causing that. I'm guessing here but if you could stand to lose some weight, please do that. This will help your muscles as well as your breathing. I lost 85 pounds by counting carbohydrates and I feel so much better. After all, it was like I was carrying an 85 pound suitcase around with me. Yikes!

As Lisa mentioned, it is important to do gentle exercises and walking is a great exercise for fibro. I walk daily when it isn't extremely hot out (I live in Florida.). I don feel like walking but by the time I get home I have less pain and more energy.

It's important to keep moving. If you sit or lay too long you will be stiff as a board and have more pain. Staying in bed is horrible for you! The more you sleep, the more you will need to sleep. I sleep 7-8 hours a night. I go to bed around the same time every night andni get up by 7 AM. I set my alarm because I know if I stay longer in bed that I will pay a price for it.

I set doable goals for myself daily. This makes me feel good knowing I'm doing my part.

I use ibuprofen, Tylenol, magnesium malate, vitamin D3, and a muscle relaxer called Robaxin that has made a significant difference in my pain. Unfortunately, what works for one doesn't necessarily work for another with fibro. It's a trial and error type thing. You will get a lot of ideas by reading posts on the forum. I also walk, as I told you, and I pace myself when doing things. All of this has helped me be in control of the pain and fatigue.

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. There are links about the supplements I mentioned and how they work in the body. All of Fibro 101 is good so do read it,

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 7/22/2017 12:49 PM (GMT 0)
Thank you for the responses,

I suppose I feel terribly hopeless as a result of lack of treatment/pain and symptom management options. I don't agree with my diagnosis, and I know that people might label that as being in denial, I don't deny that I probably have fibromyalgia but I don't believe that it's the cause for *all* of my symptoms. A great deal of the symptoms I struggle with day to day don't fit the description of fibromyalgia. I feel more like I struggle with CFS, which I wasn't tested for. I do have body aches daily and sometimes they're quite severe, but the fatigue and fevers and flu like symptoms dominate, they're every hour every day, whereas my pain might peak in the evening or afternoon hours (it fluctuates). I'm actually not overweight, I only weigh 120lbs at 5'5". I go for walks often and I see a physiotherapist once a month - unfortunately that won't last for long as coverage only covers so much. There are times when I'm so fatigued that I will pass out, there's no preventing it, I just nod off because I feel like my body is so weakened I can't keep awake.

It feels like my doctor has given up on me. Around here fibromyalgia is uncharted territory, the only doctor that would address it has retired and no one has stepped up to take his place. I requested that I see a rheumatologist and my doctor refused on the basis that they only take severe cases. Likewise the pain management clinic has terminated their fibromyalgia programs over the last three years, probably as a result of budget cuts. It saddens me that my city and surrounding area has such a lack of resources to patients in my situation, anything that has existed has been shut down.

As of now I'm looking into an herbal supplement recommended to me by an internist. If that fails I will move on to Lyrica. I tried cymbalta without any change. I take tramadol and it helps a tiny bit.

The financial situation is putting a hell of a strain on our marriage and it doesn't help that my boss is practically begging me to come back to work. Sometimes I think about returning but even after working a four hour shift I'm so exhausted that I come home and sleep for five hours. I feel super guilty about all of it.
Posted 7/22/2017 1:44 PM (GMT 0)
Sounds like you need a new primary care doctor. You definitely could have other things going on with you. The shortness of breath isn't a fibro symptom and most don't have fevers all over f the time, etc.

Rheumatologist will see anyone with chronic pain. They are good at determining what is causing the pain. You just need to check out the rheumy to make sure they treat fibro patients. There are still some doctors in the Dark Ages when it comes to this illness. I always choose board certified doctors and, if they are diplomates, that's even better.

I saw a rheumy when I started to have excessive pain and found out I had developed ankylosing spondylitis and sacroiliitis on top of Fibro. I was put on medication and am now doing wonderfully well. A rheumatologist would run tests to rule out illnesses like lupus and Lyme disease too. They have many of the same symptoms as fibro. Also, rheumatologists do work with chronic fatigue syndrome. I just googled it to be sure.

Here is a good link about chronic fatigue syndrome from the Mayo Clinic that might help you. Quite a few of the symptoms are that of Fibro also.

www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/basics/tests-diagnosis/con-20022009

So, as I said, you need a good board certified PCP...hopefully an Internist...who will work with you and respond to your request for a referral. You definitely are not getting the help you need.

Let us know what happens. We do care about you.

Sherrine
Posted 7/23/2017 12:01 AM (GMT 0)
Hi,

Sorry you are feeling so bad..fibro can seem different in different people but a while back i was in a support group for both cfs and fibromyalgia

And it seemed that ..the fibro group seemed not to have the flu like symptoms, but the CFS members did..

Whichever you have , you still need treatment for it.

Is there a specific test for CFS?

Also hearing you speak of the fatigue levels..have they checked your vitamin d levels? A good dr. Would have done that by now.

At one point i thought my fibro ws becoming much worse..but it was that my vitamin d was too low..the fatigue, foggy thinking and weakness ws overwhelming, also pain levels were worse..

I am overweight but the only time i feel short of breath is when the barometric pressure is going nuts..still your dr should check that out.

Do you know your vitamin d levels?

Lj
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