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Fibromyalgia
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Posted 8/19/2010 2:00 PM (GMT 0)
Hi Everyone, I'm new to this forum. I believe I have fibromyalgia although I've never been truly diagnosed with it. My PCP suspected I have it by my symptoms. But I'm really not so sure.

I have a lot of the symptoms: migraines, feeling of achiness all over, trouble sleeping, depression, lack of energy, and lack of concentration/poor memory. I also have pain that seems to shoot down my legs and I get this often. I sought treatment from a chiropractor last year who said she could help, but the treatment just cost me a lot of money and didn't make my fibro symptoms any better. It did help me to turn my head better, so it wasn't a total waste of time and money.

But when she first examined me, she touched the tender points. I didn't flinch or feel pain from that. So, now I'm wondering if she is right, that I don't have it. I also don't feel intense pain, it's mostly just aching. I do feel a numbness on the mid-right side of my back often. I also have sensitivity to heat and cold in my hands and feet. I cannot stay in a pool that is below 80 degrees for much more than 15 minutes without my hands and feet going completely numb.

I'm on Gabapentin and Tramadol. They both help with the pain and I always know when the Gabapentin is wearing off because the pain returns. I don't always need to take the Tramadol. I cannot take NSAIDS because I had gastric bypass surgery a couple years ago. That resulted in a weight loss of about 120 pounds, so that certainly helped with the pain, but I still have it. I don't get much exercise, as I have a hard time motivating myself to do it. I often get really tired in mid-afternoon and need to lie down. I don't often nap, but I just need to lie down for about 15 minutes or so.

I used to work full time and have been working part time out of my home for the past 5 years. My husband is out of work and I'd like to go back to work full time but just don't think I can do it physically.

Has anyone else here been diagnosed with FM but didn't have the pain when the tender points were pressed? Sometimes I think I'm just imagining all of this. I think my family just thinks I'm lazy.
Posted 8/19/2010 2:43 PM (GMT 0)
Hi Vikatory, Welcome to the forum! I'm sorry you are hurting. In getting a diagnosis
one of the first steps is being referred to a doctor who is familiar with fibromyalgia,
usually a rheumatoligist. Bloodwork is done to rule out any connective tissue diseases.
Fibro has many simular symptoms of CTD's and that is why it is very important to
rule out the posibility of an autoimmune disease. Getting a dx can take a long time.
Clinical symptoms.. fatigue and pain levels can change. Some of my tenderpoints
are more painful than others, but they all have hurt when pressed.

Please read fibro 101 page 1, at the top of the page. Sherrine has put together a
wonderful resource on fibromyalgia. There is a link to the Spoon Theory, I would
share this story with your family. It may help them understand your situation better.

We all tollerate meds differantly and you will find that we all take differant meds to
help. Execrcise is very important to people with fibro. Lack of activity will only make
you more sore.

I'm glad that you have joined our family. You will find the people here caring and
very understanding. We all know what it is like to hurt, but encourage eachother to
live a happy fullfilling life. Come back to post often with any questions or concerns.
WE CARE! Hugs, Robin
Posted 8/19/2010 3:08 PM (GMT 0)
Thanks, Robin. I will read, read read.
Posted 8/19/2010 3:11 PM (GMT 0)
And FWIW, I've had blood tests to rule out autoimmune diseases. However, my dad has lupus. His symptoms are totally different than mine, though.
Posted 8/19/2010 4:35 PM (GMT 0)
Hi, Vikatory, and welcome!  Yes, you could have fibro but, as Robin said, you need to rule out other illnesses first.  Many illnesses do have a lot of the same symptoms as fibro.  Also, each of us has a different combination of symptoms and that could be true of lupus, too.  This is why you really need to get testing done. 

 

Be sure to check out Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot.  Be sure to check out the list of symptoms and also What Else Could It Be links.  These other illnesses are treated somewhat differently and can be helped.

 

I have tender points but not all of them.  I probably would have all of them if I wasn't taking ibuprofen and Tylenol and some supplements that help me.  Without taking these things, I feel like someone has beaten me with a baseball bat.

 

I'm glad you joined our family.  I sure hope you get to the bottom of your problems soon.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine

Posted 8/20/2010 12:05 PM (GMT 0)
Hi Vikatory and welcome to our fibro family, one of the things that I have learned from being in here is that there are days where the tenderpoints wont be as sore as other days. I have also learned that they are coming out with a new protocol for diagnosing fibro, but cant remember where I read it. Sorry that is my fibro fog acting up. lol Like Robin and Sherrine said though you need to have other autoimmune diseases ruled out first. I also can not take NSAIDS because of Gastric Bypass and my bypass made me ultra sensitive to any sort of oral narcotic pain killers. I have to use Fentanyl patches to deal with my pain. I also am very sensitive to cold on hands and feet and alot of mine is achyness now but there are times where something can severely hurt too. Well anyways Sherrine and Robin have given you alot of good advice so I just wanted to say that you have come to a great place. The people here are wonderful and very supportive.
Gentle Hugs
Shirley
Posted 8/20/2010 1:08 PM (GMT 0)
Hi and welcome to the forum!! You have already gotten great advice but I wanted to welcome you
Posted 8/26/2010 6:32 PM (GMT 0)
Thanks everyone. I'm glad to be here. I'd love to get a diagnosis, but we have no health insurance right now. Hubby quit his job in May and he's trying to find another one. I work part time for a small business and COBRA is outrageous. Prospects actually look good for him to find a new job, but it's taking forever. So...I have to really lay low on the spending and doctor visits for now. I was lucky to get into a prescription program through our local grocery store that gives me cheaper prescriptions, some of them are cheaper than when we actually had insurance.

sotiredoffibro, I have a question for you. Did the hands and feet thing start after your weight loss surgery or was that a condition you had before? The reason I ask is because I've noticed that problem with me after I lost 120 pounds. Last summer was cool and I couldn't go in our pool for more than about 5 minutes before my hand and feet went numb. I'm also very sensitive to heat, like if I'm at the sink and turn the faucet to warm, I feel a burning sensation, even though the water isn't that hot. And it just seems to be with my extremities, and not other parts of my body.
Posted 8/26/2010 7:29 PM (GMT 0)
Welcome Vikatory,

Everyone has given excellent advice. about your tenderpoint question: When I was first diagnosed some years ago by my g.p., my tenderpoints were much more sensitive and reactive. Now, they're not as strongly sensitive and not as frequently. Overall, my fibro is better now than it was back then. I had my first Rheumy appt this week and told him I didn't think they were very sensitive currently - I didn't expect to react to his exam - I mean it felt painful when he touched them but I didn't freak out --- until he hit certain ones! So I don't put a whollllllle lot of weight in the tenderpoint basket for diagnosis anymore.

It is possible to find a free clinic that will work with you on ruling out other illnesses and assist with the diagnosis. Call your local hospital and ask them the names and phone numbers for free clinics in your area. I used to go to one that was only open one night a week at the local hospital. The program was run by a nurse practitioner - but they had access to doctors who sometimes volunteered their services. They can run tests, labs, etc. It is worth it to make sure you don't have something else going on. If it is "just" fibro, then you can carry on with finding ways to make you life better. And it can get better.
Posted 8/27/2010 2:15 AM (GMT 0)
I only had a few in my neck and shoulders.. Not nearly enough for a dx of Fibro. But have it I do. Course.. they didn't do this test until I was already on Savella. I felt no pain for some reason. Now the day after the test? I felt every where that he poked me!! I have a high tolerance and delayed reaction to pain. And.. My real problem is rarely where the pain is. So your symptoms are perfectly normal for Fibro.

Lupus also displays in different ways. So do alot of things so you can't count them out until the lab tests do. :)
Posted 8/27/2010 12:55 PM (GMT 0)
Hi Vikatory, you know now that you mention it the intolerance to cold on my hands and feet did get alot worse after the bypass. I cant even mix up hamburger anymore because I cant handle the cold on my hands. Luckily my kids do that for me. I guess I never really thought of it before though. You are right it was after the by-pass that I couldnt take it anymore. I dont have problems with heat though like you do, just the cold.
Gentle Hugs
Shirley
Posted 8/27/2010 3:29 PM (GMT 0)
I just had my doc up my Gabapentin because I found I needed to take them more often and I'd use them up before I could get a refill. The first couple of days on the double dose I felt loopy, but now it seems to be working very well. It gives me energy too, but it doesn't interfere with my sleep. Of course, I have to take nighttime Tylenol and a Xanax to knock me out at night, but I do get a good night's sleep for the most part.

So now I feel better. I just hope it'll last.

Thanks everyone for your understanding and kind words. I don't have a lot of understanding people who I can talk to about this.
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