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What is going on with me?


#1

I am very new to fibromyalgia. I can’t even believe how much pain I have. I was fine three weeks ago then all of
a sudden I have very mild body aches and the next day I can hardly walk. What? For the better part of two weeks, I have been unable to do basic tasks because of the pain. I have been to ER twice. Each time they blew me off and didn’t do anything. So is it “ normal” to have joint and muscle pain primarily in your legs every day? They have a tingling sensation. My fingers, wrists and forearms ache but the pain moves around my body. For a few seconds my ribs might hurt. Then my shins will hurt. Then my right shoulder will hurt etc. I am also tired. If I do a task, I get tired and have to rest. How do people work a full time job? I kind of feel a little crazy- like these symptoms can’t be real. Anyone else feel this way? Some days I haven’t been able to function at all. I have had to cancel several appointments/ dinners etc because I was in so much pain I couldn’t drive. This has just been the last two weeks. What? Does this ever go away? I have read about fibromyalgia on the internet but they don’t really tell you about pain radiating throughout your body and pain that changes throughout the day or that simply walking may be extremely challenging. Believe it or not I’m a nurse and have been one for many years. I don’t remember ever taking care of a patient with fibromyalgia in the hospital. Again, this is all new to me. All my labs are negative. I guess I’m a little frustrated. I would greatly appreciate any wisdom you have to offer.


#2

Sorry you are going through this. See if you can find a fibro support group or internet site with recommendations for fibromyalgia doctors. Rheumatologists should be able to help you or a university or hospital pain clinic. You may also need to see a pain specialist or rehab doctor. Read up on fibro. Yes pain radiates and changes day to day. No lab test, diagnosis by elimination. The fibromyalgia advocate is the best book. Good luck!


#3

Hi,

Have you seen a dr? Pain that moves whereever it wants can be fibro… but there are other things that need ruled out.

Self help will be very important, stretch the muscles whenever you can, topical pain relievers can really dial back particular areas of pain… most with fibro use heat, but alternate heat and ice helps some…
I am med sensitive so i do use low dose pain relievers, and anti inflamatories…it is thought we have neuroinflamation that does not show in the blood work…

At times i have had very gentle physical therapies to help,
Acupuncture helps me somewhat, i had been in a flare and could not snap out of it , so i just started back to that. My daughter also gets help from acupuncture.

Some supplements help us… magnesium and malic acid
I like curamin, and curamed

Ask questions, between self help and your dr… you can feel better


#4

Thanks for replying back to me. I saw my PHP three times and a rheumatologist about two weeks ago. She is the doctor who thinks I have fibromyalgia. After reading more on this website, I think she is right. Wow! I had no idea it could be this bad. Do people find that climates that are hot or cold are better? I live in Illinois and want to move to Arizona. I’ve only been dealing with this for three weeks. It came on fast! Today my chest feels like a two year old is sitting on it. Are people able to work full time jobs? How?


#5

Freedom: I have had FMS for about 13 years, however I just recently found out the hard way, that if you have a specific area that is VERY painful and just gets worse, get a second opinion. My pain has always been in my lumbar spine. For the past year or so it has just been getting worse. I have had MRI’s, but my pain doc doesn’t even read them and tells me all is fine. It is NOT! I found out just last week, I am in need of lumbar fusion surgery for a slipped disc at L4-5, that I have had for three years and that has been on my MRI reports! My pain is through the roof and my doc keeps cutting my meds; I am in more pain than ever. Have seen one neurosurgeon and am waiting to see another. My advice: be you OWN ADVOCATE! Always get copies of all your medical reports, go through them and if you see something, ask! Have your PCP refer you to a specialist. I also found out I have osteoporosis in spine/hip and my MRI report even said I had problem with my common bile duct, which required a stent and an additional surgery. My doctor didn’t even notice any of this. Don’t ever take for granted that it is “just” the FMS.

Deborah


#6

Hi Deborah, Wow! I am so sorry the doctors did not pay attention to your symptoms OR your test results. You didn’t mention what type of doctor this was. It really doesn’t matter! And they cut the dose on your pain meds? And all these results were on your MRI from three years ago? That is crazy! I hope you have switched doctors. In my short three weeks, I have been blown off twice when I went to ER. The first time I had symptoms but no tests or diagnosis. Each time I was experiencing severe pain. The worst pain I have ever had in my entire life! I saw my PCP three times. Only the last time when I started crying in her office did she take me seriously. I did find a rheumatologist that I think is good. I’ve only seen her once but I am seeing her again Thursday. Thank you for your advice. You really do have to be your own advocate. Good Luck!


#7

Hi! I forgot to tell everyone. Today I woke up, grabbed the flashlight, pointed it at the TV, clicked it on but nothing happened. Why? Because it was NOT the TV remote control. I did laugh out loud! I was in the fun Fibro Fog zone!


#8

My name is Mara. I’m 15 and I have Amplified Musculoskeletal Pain Syndrome… basically fibromyalgia. I experience the same things. I can barely walk now, and it’s gotten to the point where merely breathing hurts. They have tried medicines like gabapentin but my body can’t even handle the lowest working dose of 300mg. I also have Crohn’s disease so that really makes things worse on top of it all. Living with the pain we do is awful, but unfortunately we just have to live through it. Because I have multiple chronic illnesses, I was told to go to a counselor. They asked me questions like, “how do you wake up in the morning?” Not asking how my morning routine is, but how to I bring myself to get up everyday knowing my day will be miserable. Basically asking me why I even still bother getting up at all, or how I still have even the will to live at this point.?. It was ridiculous. What I realized is that counseling made me very angry, because I didn’t understand why we had to pay to talk to someone who would ask me depressing questions and who would “teach me coping skills” even though they have no idea what I feel physically on a daily basis and has no idea what I am even coping with. That question she kept asking me though, about how are bear to wake up in the morning, got me thinking. The answer is, I just do. Because I have to. We don’t get a choice anymore whether or not we get up because we have to. It may be painful and it may be difficult but we have to figure out our new normal and keep moving forward. It’s very hard, and we should never stop talking about how hard it is because there is so much more research that needs to be done, but we just do it. That’s why we are stronger than any other person out there. We fight a never ending battle against something that can not be cured and can not really be treated very well. We are stronger than anyone even when we don’t feel like it. And we find ways to find strength and happiness through the pain. That’s just what I’ve learned.


#9

Mara,

Who told you the lowest working dose of gabapentin was 300mg? Because I’m here to strongly disagree with that statement. Everyone is different.

I don’t have fibro, but I take 100mg of gabapentin twice a day and get 96% pain relief from nerve pain from nerves compressed by lymph edema and it works as a daily med to help combat chronic, neurologically complicated migraines as well as facial nerve pain.

It could be that 100mg works for you. Did you try that tiny dose for two weeks and see where you ended up? Maybe 200mg works for you. There’s just no telling until you try.

Are you seeing a counselor who deals with chronic pain? Because it doesn’t sound like that’s her specialty. If it was, she wouldn’t be asking you how you got up in the morning. You may want to find a different counselor who deals with chronic pain.

azurelle


#10

Hi Mara, I am so sorry you were treated so poorly by that counselor. I see a counselor and have for many years dealing will different issues. Even if she ( my counselor) had no clue about chronic pain, she would never ever make a statement like that! Please continue to try and find a counselor that meets your needs. Before you start with a new counselor, you need to interview them. It is true, there are counselors that specialize with different problems. Also, make sure your doctor is well informed about medications and dosages. Are you seeing a rheumatologist? Or someone who knows a lot about fibromyalgia? Sometimes you have to switch doctors too. Remember, you are very important. You deserve to be treated with dignity and respect. Good Luck! Continue to stay :muscle: strong!