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extreme pain and no answers

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Fibromyalgia
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Posted 1/31/2015 4:44 AM (GMT 0)
I Am 21 years old and ive been to 4 different doctors in the past two weeks. Once my PCP then another pcp at the same office. I went to urgent care two nights ago and then with another doctor last night for two hours. I have been extremely fatigue for months and months every once in awhile I would get pains in my body...well its gotten worse and worse....my entire body feels like its being squished under something extremely heavy. I have no motivation I'm so so tired. My hands hurt when I write and when I say my entire body hurts I mean my toes my knees my hands my neck my back my head EVERYTHING. Not one doctor has given me a answer as to why or what's happening with me...I'm so.miserable and I am.in so much pain. I lay on the the floor for hours because its the most relief I can get and even that is painful. I've had so many blood tests done and now they want more and to do other testing. They gave me medication to take for muscle inflammation (steroid) but it doesn't seem to be working because yet again I was on the floor. My hands and feet keep swelling up along with the rest of my body and they get numb and tingle at times..

Does anyone have any tips for the pain? The other symptoms ( weight gain, mood swings, depression, hair loss in shower hair brush Don't bother me as much as the pain, swelling and numbness/tingling in my hands and feet.

I am willing to try anything! I need some relief 😢

Thank you all in advance!
Posted 1/31/2015 5:08 AM (GMT 0)
Nhgirl15
Welcome. I am truly sorry you are in so much pain right now. You need to find a good bored certified rheumatologist. they deal with fibromyalgia daily. medication will help take the edge off of the pain but it will not get rid of all of it. you will have to find out what works for you whether it be exercising, massage, supplements, meditation or gentle movement.

but first you have to find out if it's fibromyalgia your truly dealing with. Many other things can mimic fibro. So you need to have those ruled out. Believe it or not you can Feel better than you do now, but it's going to take lots of trial and error and lots of hard work and belief that you can get better.

Have you read fibro 101 the very first thread? Tons of info there and you may just see yourself in some of that info.

Please Keep us posted on how you're doing because we really do care. Others will be around soon to share their suggestions.
Take care and again welcome!
Michael
Posted 1/31/2015 6:19 AM (GMT 0)
Based on the 4 posts you made tonight..all being exactly the same.. I'm unsure of what to say. Did this just start 2 weeks ago? If the pain is what your describing then maybe a trip to the ER is in order to be safe. I don't think you'll get the answers here that you want. Can you be more specific to what's going on? How long..ect
Posted 1/31/2015 6:43 AM (GMT 0)
nhgirl,

I'm sorry you're having so much trouble. You didn't say whether you're taking anything specifically for the pain....doctors are often hesitant to prescribe painkillers, especially for someone so young, but I would think in such an extreme case, they'd give you something, at least short-term!

At least, they are doing lots of tests. That's very important, even though it can be a pain, because things have to be confirmed or ruled out.

You mentioned swelling - that's not a Fibro symptom, but numbness and tingling sure can be, along with everything else you mentioned.

Just an off-topic heads up - posting the same exact post in multiple HealingWell forums is against the rules, mostly because we do get lots of spammers who like to flood the forums....but of course, being brand-new, you didn't know that. You're looking for answers and wondering if your symptoms fall into any of the categories here.

I hope you get some answers soon. In the meantime, deep breathing, ice and/or heat, and gentle stretching if you can handle it are all safe and might do some good. Remember, we are here for you. We all understand what it's like to have chronic pain, and we give eachother lots of support. Whatever condition you turn out to have, you're not alone, and you can feel better than you do right now!

Good luck,

Debbie
Posted 1/31/2015 4:07 PM (GMT 0)
Hi, nhgirl, and welcome! I see you posted in the rheumatoid arthritis forum and the lupus forum but you might want to post in the Lyme disease forum also. Debbie is correct that multiple posting is against forum rules but I consider your post an introductory post and you put them in illnesses you think you might have so I think that will be fine. I know your responses to members in these forums will be different because the advice will be different.

You are on your way to getting answers since you've already had testing done. If all your tests come back normal, then a diagnosis of fibro is usually given. But I do think, if you do have fibro, that you have another underlying illness because of the swelling. That isn't a symptom of fibro since fibro is not considered an inflammatory illness. I have fibro AND several inflammatory illnesses.

But do see a board certified rheumatologist who treats fibro patients. Be sure to as first since there are still doctors in the Dark Ages when it comes to this illness. They will run tests to rule out Lyme disease, lupus and other illnesses and I think you have the best chance of getting a diagnosis from them.

Do read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. Good starting links for you would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. You just might see yourself there. 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 1/31/2015 11:08 PM (GMT 0)
I agree about the swelling. That sounds autoimmune to me. Find you a good rheumatologist and get some answers.
Posted 2/1/2015 5:21 AM (GMT 0)
Often we have more than one thing going on , that bring on symptoms..so its good you are getting testing done..to find out the cause...usually with fibro we use heat...but with swelling i would not be sure..you could try ice packs or a heating pad for pain and see which feel the best...

I get some relief from doing acupressure on myself ...you can look online for the spots ..i can bring my pain levels from a seven to a four in minutes with some of these..just google acupressure points for the worst areas..

Have they checked your vitamin d levels? I hope so ..when mine got low i had awful pain, fatigue, forgetfulness...and was very weak..

I get about 50% of my pain help from topical pain relievers. Like bio freeze, pain erase, soothanol x2

Are you taking anything over the counter for pain? Or did they give you anything?

Sometimes it takes a while to get it all diagnosed and a treatment figured out, but you are working on it!!

So many nice folks here who try to answer questions.

Lj
Posted 2/2/2015 1:15 PM (GMT 0)
I am being told by rheumatologist, my neurologist, and my PCP that muscle swelling is part of fibromyalgia. I've been trying to find some correlation to it, but it seems like doctors are telling people that right now.I know if you go out to the symptom checkers that muscle swelling can lead to a fibromyalgia diagnosis, but those things are kind of flawed anyway. It just seems like a prevalent answer these days.
Posted 2/3/2015 4:33 AM (GMT 0)
Muscle swelling is not fibromyalgia related. That is autoimmune related.
Posted 2/3/2015 6:14 AM (GMT 0)
I do not think of it as muscle swelling..but i used to complain between the neck and shoulder would get puffy and swollen, my dr would check it...undetermined cause...

Once the lymphatics got blocked in a leg injury... When they got that unblocked in therapy..i lost 15 lbs in one day...but it was an injury not fibro..

I think at times this disease can stump them , lj
Posted 2/3/2015 5:18 PM (GMT 0)
nhgirl, have they checked your thyroid? It definitely sounds like you have a few things going on here. You could try paced breathing and meditation. You can find these exercises on youtube. The doctors at Mayo said that is good for fibro. Also, look online for differential diagnoses for fibro. You might find something there. I hope you find some answers and relief soon.
Posted 2/5/2015 5:25 AM (GMT 0)
couchtater has got it.
Posted 2/5/2015 8:26 AM (GMT 0)
NHgirl15 - sorry to hear you are in so much pain - I would get a CT scan of your back/spine - sounds like bulging discs with pinched nerves. When the spine is damaged it can manifest in all sorts of random pain/tingles, and not necessarily in the back - it can manifest as pain anywhere and is also very tiring to the body so you feel fatigued. Worry and stress about what it is causing your problem also makes you very tired. It's important to find out if it is damage to your spine (which can be caused by something as minor as a slip or picking up something awkwardly) so that you are not perpetuating whatever is causing it, because unless you rest the spine , you can make it dramatically worse. Don't lift or carry anything heavy until you find out from scans.
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