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Posted 1/20/2014 11:21 AM (GMT 0)
Hello everyone! I am new to the forum but was diagnosed with fibro in 2011. After my diagnosis, I have been taking Cymbalta for the pain (and depression which I've had most of my life). And the fibro seemed pretty much until control until last October. I started having much worse pain and also started having extreme fatigue, days when I felt like I had the flu, itching, muscle spasms, and loss of memory. I also started losing my appetite, and I still don't eat much, yet somehow I've gained 20 lbs. in the past year! My sleep has also been affected...while I am always tired, some nights I barely sleep, while other nights I may sleep 12 hours. Since October, I have been getting worse and worse. Most days, it is difficult to get into a car, and some days I can barely even walk. Since the pain seems to mostly be in my joints, I thought I had RA. So, in December I finally had the money to go to my general practitioner. (I don't have health insurance. But thankfully, that will change February 1st.) She thought I had RA as well, and did bloodwork to test for that and other things. Finally (on Christmas Eve no less), the nurse called with the results. The bloodwork showed that for RA it was negative, but the lupus panel was positive. I was in shock. It took me a few days to accept it, but then I started researching, because I didn't know a thing about lupus. As I read, I realized that it did sound like what I was going through. I had set up an appointment with a rheumatologist, but he couldn't see me until the end of January. Last week, my symptoms got so bad that I called the rheumy's office and they were able to see last Tuesday. I was actually kinda happy, because I thought I would finally get some help. So, the GP's office sent my records to him, EXCEPT the lupus panel results! And while the rheumy was pleasant enough, now I don't know what to think. Since he didn't have my test results, he doesn't think I have lupus...that my fibro has just gotten worse. He did the "points test," which every single one of them hurt, but I told him I already knew I had fibro. But, he thinks that's it, although he did do more bloodwork. And all he gave me was Trazadone to help me sleep, and told me to exercise and that would get rid of my pain. OK, that might be true, but how do you exercise when you can barely move? A few weeks ago, I almost collapsed at the grocery store, and I've been trying to be more active...yesterday I was helping my mother clean out a closet and by last night I was in horrible pain. And the doctor wants me to work up to 45 minutes of exercise a day, every day. At this point, I just don't see how that's possible. OK, I apologize for this being so long, but I'm frustrated and wanted to tell my story. Thanks for reading!
Posted 1/20/2014 1:49 PM (GMT 0)
how about a paragraph - my fibro brain cant read a 50 line run on sentence

thanks

Hi, and welcome. It is good to use paragraphs but I find when new people come on that they get so busy typing their problems that they do forget....kind of like you forgot capitalization and punctuation. But I will put a post up reminding people so it makes it easier for everyone to read.

Sherrine

Post Edited By Moderator (Sherrine) : 1/20/2014 10:23:17 AM (GMT-7)

Posted 1/20/2014 4:22 PM (GMT 0)

mhenderson said...
I started having much worse pain and also started having extreme fatigue, days when I felt like I had the flu, itching, muscle spasms, and loss of memory. I also started losing my appetite, and I still don't eat much, yet somehow I've gained 20 lbs. in the past year! My sleep has also been affected...while I am always tired, some nights I barely sleep, while other nights I may sleep 12 hours.


I have these symptoms, questioned whether I had something else along with the FM. But after being on this site, there are other people with these flu like symptoms too. Sometimes the flu symptoms are what gets me down for days and not the fibro pain. I also read about weight gain. As for the sleeping, if I take 'Calm', it does help me sleep on those nights that I can't, nothing helps me be able to get more energy. So who knows, maybe it is more than fibro, maybe not. Doesn't really matter, this is what we have to deal with no matter what name you put to it.
Posted 1/20/2014 5:17 PM (GMT 0)
Hi, Mhenderson, and welcome! Yes, you can have fibro and lupus. We have members with both. Fibromyalgia is not considered a progressive illness. If you are getting worse and worse then there usually is something else going on. This happened to me nearly two years ago so I headed to a rheumy and, after a myriad of tests, it was determined I had ankylosing spondylitis along with fibro and I'm being treated effectively and am doing so much better.

Fibromyalgia and lupus have many of the same symptoms. Fibro also shares symptoms with MS and Lyme disease and a few other illnesses. I'm glad to see that your rheumy did run more testing and it's a shame you didn't mention the lupus info that you had. I know you thought all the test results had been sent but people make mistakes. Doctors do make mistakes and at least your rheumy believes fibro is a true illness. There are still doctors out there in the Dark Ages when it comes to this illness.

You need to keep moving with fibro. Gentle stretching exercises help along with daily gentle exercises. I walk and/or swim as my form of daily exercise. Yes, you do feel better. When I started my walking program I could only walk four houses down and had to turn around. But I didn't give up, went out the next day and could go a little bit further. I now walk at least a mile in the morning and I have more energy and less pain when I get back home. It takes a while but it can be done.

You do need to get your pain under control. I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a prescription muscle relaxer that has helped me significantly. Unfortunately what works for one with fibro doesn't necessarily work for another so it's a trial and error situation but you will get many suggestions from our great members here on this forum.

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. Be sure to check out the links called What Else Could It Be and the links about magnesium malate (malic acid/magnesium) and vitamin D3.

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 1/20/2014 5:36 PM (GMT 0)
Hi, mhenderson.

Welcome to the Fibro Forum. You sure are dealing with a lot! Since you already know you have Fibro, and you're feeling much worse, it stands to reason something else is going on. What in the world was your GP's office thinking?!

I think that after they apologize to you, they should still send the results now - and the rheumy should see you for free - considering he didn't have access to the most important information. But, then again, the world rarely works the way I think it should :( It might be worth a try, though. If not, you'll just have to pay for another visit when you can afford it.

I don't know if you noticed, but there is a very good Lupus forum here at HealingWell. It wouldn't be a bad idea, also, to check out "Fibro 101," first thread on this forum. Even we old-timers can learn new things about it!

As far as your doctor telling you to exercise for 45 minutes, I think that's a bunch of hooey. Sure, it may be ideal, but, many of us (myself included) can't do that. Some days, I'm lucky if I can walk around the mall for 5 minutes and get myself around my house, up and down the stairs and in and out of the grocery store.

Once you start getting things under control again, of course, you can move in that direction. You know your body better than anyone else, and we're all different - and even then, we're different on different days! Sometimes, I can lift a 2-lb can into a cupboard and not pay for it....the next day, not!

I'm sure you know that actually being too sedentary isn't good, though. Ah, finding the balance! Sometimes it seems that's all we do...

Hope to see you around more.

Debbie
Posted 1/20/2014 6:11 PM (GMT 0)
Welcome mhenderson to the forum! Your in the right spot to get help. I can totally understand where you are coming from and I know many here can too. Hopefully you can learn how to manage your fibro better and get great support from here.

At first it's hard to figure out what is going on in your body. It can be scary at first for sure. Educating yourself is very important and very beneficial. I remember going to the Dr. and having a postive lupus level too. Sometimes they are repeated or ordered with other test to confirm if that is true levels. Many times it's not lupus and in my case it wasn't . I use to think my Dr's were wrong and I convinced myself I had lupus. I would tell myself how could fibro cause all these problems. Over the years I found out fibro can cause multiple symptoms that are similiar to other diagnoses. Sometimes it's still hard for me to figure out a new sickness problem or fibro.

I have found out the hard way in controlling my fibro. It took years for me to figure out a treatment plan. It was here where I learned how to manage my fibro. The more natural I keep it the better response I get. Many of us are very senstive to drugs, so I try to keep it as natural as I can. I know exercise is extremely important to fibro. I know days that you think you can't do it, but just push yourself to do some. You will learn in time what is too much. Lol I do the following for my fibro- light exercise, eat healthy, calcium, magnesium, vitamin D, limit stress, remron, rest when I can and subutex for pain. The vitamins supplements are important to fibro. I could tell a big difference in my pain after taking magnesium and vitamin D.

Learning to manage your fibro will take some time. It will probably take some Life style changes for you. Things like eating better, changing Your sleep habits, reducing your stress, exercising and Reducing your hours you work. I have found out this helps so much. Buy a book on fibro. It really opened my mind up and I could see myself on each page.

I am happy to say I finally have good control over my fibro. I hope you can have the same. Try not get to discourage, it's just knowing how to manage it better. The support also makes a big difference. Your not alone in this anymore. I hope we see you around again.
Posted 1/20/2014 6:40 PM (GMT 0)
Welcome to the forum, I am sorry for your pain.

It is not uncommon to have fibro along with autoimmune diseaes. I also have lupus, RA and scleroderma. Having other conditions with fibro can affect it. If one thing is flaring, it can aggravate another condition and cause a multiple flare.

At some point you may be started on a combo of prednisone and plaquenil for you lupus...that will help calm things down for you. There is some great info on the lupus forum here that will help you.

Exercise, such as walking is great for fibro. If your joints are swollen from lupus, you don't want to push the exercise until you can get the swelling under control. You should do daily gentle stretching and get your joints through a full range of motion to prevent stiffness... that does lead to more pain.

With any condition you have, it is important to be proactive. The more you can do to help yourself feel good, the better. You can live a good life, the first step is always believe it is possible. :)

I'm glad you have joined us. We care!

Hugs, Robin
Posted 1/20/2014 9:12 PM (GMT 0)
If you have lupus also you need to be careful of UV rays. Many people with lupus are photosensitive. UV rays make me feel so sick and weak.
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