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Fibromyalgia increase in pain

Oct 31, 2015 12:04 PM

I have not been officially diagnosed with Fibromyalgia yet, but my doctor is suspecting it, I think he is waiting for me to be in pain for 3 months before he makes the diagnosis. My question is, does Fibromyalgia pain get progressively worse, or at some point should the height of your pain be somewhat consistent? It seems that my pain continues to get worse and more widespread throughout my body. I am just wondering if this is normal. I have gone from some numbness and pins and needles foot pain and hand pain with headaches, to pain all throughout my upper and lower body, legs chest, arms, hands, a lot of stomach pain, back, neck, and now my jaw. I am just wondering if this will keep getting worse. Is there anything I can do to help? I know people say diet, but specifically what do I avoid? Thank you.

Oct 31, 2015 12:16 PM

I suffered the same type of symptoms over 20 yrs ago. May I ask a question? Does your numbness and tingliness happen on one side or is it equal when it happens? Also do you have any weakness in your arm, hand, do you drop things? Any weakness in your leg or foot?

Oct 31, 2015 1:10 PM

It seems to be pretty equal in my feet. The numbness and tingliness goes away when i take amitriptyline, but it doesn't do much for the rest of my body. Sometimes I do drop things when my hands feel more numb or stiff but it is not a frequent occurance.

Oct 31, 2015 1:16 PM

Have they ruled out lupus or Multiple Sclerosis? If not, ask your doctor to run the tests to rule it out. That's the only definitive way to get a diagnosis of fibromyalgia. Rule everything else out, and if you have 11 trigger points or more, it's fibromyalgia. I have been there and done this. It took 20 yrs for me to get my MS diagnosis. Good luck. I will pray you get a quick diagnosis.

Oct 31, 2015 1:25 PM

Do you know if lupus or multiple sclerosis can cause pains in trigger points as well? I ask this because I definitely experience pain at trigger points, but I have additional pains in places that are not trigger points as well. I understand that an ANA test can diagnose lupus, but I am unsure of how to rule out MS. I wanted to add I am young, 28 years old. Thank you for your response. I appreciate it greatly!

Oct 31, 2015 1:38 PM

I was 26 when I first started noticing symptoms. They rule out MS in a couple of ways, the usual is an MRI of the brain. Don't let that be the end of it, sometimes the plaque is in the spine, as was my case, which is what took over 20 to get them to look at the fact that I have 2 types of pain in my spine. Make them look there too. If there isn't plaque in those places, I'd say u were clear of it. Lupus is a simple blood test. I pray that you just have fibromyalgia. It will level off at some point. People can have different levels of pain and still have the same diagnosis. If you have more pain, then you have a more severe form. Yes, both MS and Lupus can cause pain in areas other than the trigger points. Remember you can have fibromyalgia and something else. It seems that is what happens with a lot of people. Good luck. I'm here if you need me.

Oct 31, 2015 2:02 PM

Thank you so much! I can't tell you how nice it is to get information from someone who understands. I was that my doctor was rather quick to try to diagnose me, so now I have a better idea of what tests I should request. I feel like i am going through this all alone and no one close to me really knows what i am experiencing. I am very grateful for your help!

Oct 31, 2015 2:23 PM

You are not alone when you are part of this community. We understand pain and depression and frustration and all the stuff that goes with having chronic pain and or diseases. There is always someone who will listen and try to help. I'm here.

Oct 31, 2015 2:42 PM

I know how you feel, mine has been getting increasingly worse over the past few years. I now walk with a crutch and still no diagnosis. Hope everything goes well for you. People have been really nice and understanding in here :-)

Oct 31, 2015 2:48 PM

Hey Scrossy, I understand your pain. The delay in diagnosis delays treatment. I waited and fought for over 20 yrs.I didn't get my diagnosis until I was so weak that I couldn't even walk with a walker anymore. I finally started treatment a week ago and this morning, I was able to make my own breakfast and then lunch. I was so happy. Hang in there and keep fighting. Make them do whatever needs to be do done to get your diagnosis.

Oct 31, 2015 9:07 PM

Leotardbanshee, welcome! I started having very noticeable tender points and fatigue 7-8 years ago but wasn't dx with fibro until 2012. Mine has worsened slowly during these years, until I developed severe symptoms last year. It turns out I now have Sjogrens and hypothyroidism as well as memory loss. I was put on Plaquenil for the sjogrens and thankfully it has reduced my daily average pain from a 7-8 to a manageable 2-4. I'm in a flare right now though, with just enough energy for necessary activities. Educate yourself about fibro and MS, and other possibilities. Like many of us you may have more than one issue, especially autoimmune. I've had IBS all my life, and it goes along with fibro.

Check out some websites (leaving the www off so the links don't run together):

You can rant, rave, talk, cry, laugh, and lean on everyone. We're all here for each other. We may not have the same issues or treatments, but we all understand chronic pain. (((Hugs))) Good luck & best wishes. You'll be in my thoughts & prayers. 🙏🌼

Dec 28, 2016 3:29 PM

Medication has reduced a lot of my wide spread pain. It used to be so pain to try and move because the pain was everywhere. I have noticed if I follow a well balanced diet I feel even better.

Dec 28, 2016 5:01 PM

I was dx with fibro 13yrs & hypermobility syndrome (HMS)16yr ago and unfortunately for me my pain has kept getting worse in that time. Pain meds help but I haven't been pain free since I was little. The HMS gives pain like arthritis so generally my life is vry painfully, stiff and all the other wonderful things fibro & HMS give. Best advice is to self care & push for things with Dr to get the answers u nd. All the best.

Dec 28, 2016 5:06 PM

I also have stiffness and my fibromyalgia pain has increased with the cold weather

Dec 28, 2016 5:08 PM

I hate hot & vry cold temps cos it makes the stiffness worse. Hope ur having an ok day.

Dec 28, 2016 5:15 PM

Actually I am having a bad day with a sudden onset of sharp electrical pain in my right side. Currently sitting still because movement triggers another onset

Dec 28, 2016 5:17 PM

I'm sorry to hear that but totally get it as I seem to be in a constant over xmas.

Dec 28, 2016 5:19 PM

Sorry to hear you are also suffering

Dec 28, 2016 7:16 PM

No tests for fibromyalgia, ask to be referred to a rheumatologist. Keep a diary of pain vs activity and where pain is and intensity and what pain feels Like, for sample tingly sharp nerve pain cramp fatigue heaviness etc to take to appt.

Jan 02, 2017 11:13 AM

I was diagnosed with fibromyalgia about 2 years ago after 5 years of dr visits and tons of blood test, first i was told it was borderline lupus? Which never made sense to me, as years passed I noticed how much weaker and full of pain from head to toe i was. I went to another rheumatologist for a second opinion and that is when he told me it was fibro. Following that, I took cymbalta for 2 years up until about 3 months ago due to me starting to have horrible side effects from the long term effects. I now take mirtazapine and Amitriptyline and it seems to be doing its job for the most part. Everyone is different when it comes to flare ups, but the best advice I can give you is to see a rheumatologist as well as possibly trying CBD oil or even weed, that's been my saving grace over the last few years, temporary relief and relaxation only if it's for a few hours can make a world of difference. Hope this helps!

Jan 02, 2017 1:44 PM

I have found my fibro has gotten worse. A gluten free diet you could try or an eliminating diet to see if it helps. Gluten free has helped with my brain fog. Best of luck to you and gentle hugs

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