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Living With Fibromyalgia - Online Support Group

New to Fibro New to This Site

#1

I was recently diagnosed with Fibro. Doing all I can to learn about it and set my goals. This site looks very interesting and helpful. I had experienced flu like symptoms for about a year and a half, then my doctor finally listened to me when I told her something bad was going on. To be honest, I’m a bit nervous about the journey I’m on. Any helpful tips will definitely be welcomed.

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#2

CMM, I am so sorry you are suffering but glad for you that you finally have a diagnosis.

The first thing that helped me the most, was a heated mattress pad suggested by my massage therapist, which I purchased online from Sunbeam. I use the Preheat function while bathing, so the bed is warm when I get in, then reset to Low. For the first time in MONTHS, I do not wake every hour to turn over painfully to carefully rearrange myself in the bed. Except for one getting up to the bathroom, I sleep all night. On waking, I am not as stiff and sore as accustomed. Marvelous. My husband did not want it on his side, so I bought Twin size and simply laid it out on top of our regular mattress pad and underneath the bottom sheet. $49.49 with free shipping and the best money I have spent lately.

I have been reading a lot about fibro, because the more I know, the more I understand, maybe the more I can help myself. The doctors do not have any real answers. Reading about research projects, they are all looking everywhere and many competing theories. There are so many symptoms in different constellations in each patient, hard for them to narrow it down.

I recommend Devin Starlanyl’s book “Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition)”. It is very dense and a lot of valuable information. Some days, I cannot read it because my fog is greater. But on days when I can read it, I have learned so much.

Another good book at the beginning is Claudia Craig Marek’s book “The First Year: Fibromyalgia: An Essential Guide for the Newly Diagnosed”. It is broken up day by day and then week by week and then month by month. Over the last 3 months, I have read the entire book and meant to read it again. The progression is very helpful to get clear understanding.

I do not know if it will help you too, but I hope so, and send you my best wishes and prayers, as well. RA:)

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#3

Thank you very much for the info. I do know that my heating pad works
great when my joints are in pain. I appreciate your information.

#4

Hi ranselmo49, thank you so much for telling everyone about the heating mattress pad!!! I’m going to look into that because my heating pad does help me but of course it’s not all over. So I’m moving it from place to place lol. I pray that you find comfort day by day! Keep being a encouragement to others! Because your post have blessed me! Have a blessed and awesome day!

#5

Thank you so much for the info. I will look in to that. Have a more than
wonderful day.

#6

I have painful knots under my skin and especially near my spine. Does anyone else have this

#7

Oh wow, that sounds horrible. Are you sure it’ Fibromyalgia?

#8

That’s what the doctors told me it was a characteristic of it. So I was
just wondering

#9

I think I would have that checked out more. Everything I’ve read and heard about Fibro never mentions knots under the skin.

#10

I will have my doctors check. I do have fibromyalgia I was diagnosed in
2012. I am just so tired of hurting and I hoped the group can help me with
some suggestions.

#11

sounds like muscle spasms, when there bad enough you can literally feel them muscle threw your skin contracting.

#12

Thanks for the info. I am going to check out "The First Year of Fibromyalgia ". I was diagnosed in January. I was forced to try several medications before my insurance company would ok Savella for me to try last month. What a long, painful, few months! But, I am happy to say it seem to be helping. Thanks again.

#13

Hello Weezer, I’m so sorry that you have people that don’t understand what your going through! But believe you I understand. Because today is a huge flair up day! I’m hurting from head to toe. I have never taken the medicine you talked about, Savella. How is it working for you? Is that a pain pill? I’m taking Lyrica and Tramodal for my fibromyalgia and arthritis pain I’m taking Celebrex. But for the most part it isn’t really giving me much pain less days!!! Sometimes family and friends really don’t understand what your dealing with. And as David said they really should educate themselves, but for the most part they don’t. My husband really doesn’t understand what I deal with. Because sometimes he makes me feel so bad because I don’t and can’t do the things I use to do. I pray that you do find friends that will understand what your dealing with. And also that you find the right doctor in your area. Take care!

Shirley :bouquet:

#14

Hi @raquelankom

With my fibro I don’t necessarily have knots but when we all get stressed out we can tense up in our neck and shoulder area. I have had pain in my lower back near my spine but it’s been determined that it’s bursitis. I’m curious as to where in the spine you are feeling these knots if it’s in your lumbar or further upwards.

Thanks,
David

#15

They are on the sides of my spine kinda in the middle of my back. I also
have one in my thigh.

#16

@raquelankom that sounds very uncomfortable. I have done Physical Therapy a couple of times and I know they have the machines that give you electrical impulse into your muscles. I can’t remember what it’s called. Do you talk to your PCP about it? Is it something you think Physical Therapy could help with it?

David

#17

She is the one who told me that they were a characteristic of fibro. I have
tried physical therapy a few times never stuck with it for to long because
it hurts so much

#18

Oh okay. I don’t stick with PT either hence this will be my 3rd time. I have no problem going to the set times to do the work there but when I’m home, I have no motivation to do it on my own. I have not heard of muscle knots being associated with fibro before. I will ask my Rheumatologist the next time I see them. I hope someone else can chime in who knows what that is. Try to stay positive Raquel.

David

#19

Yes I do I get these all the time, sometimes massage helps, but I found regular chiropractor visits helpful and reduced the pain

#20

My doctor tells me that one of the ways of diagnosing fibromyalgia is finding specific trigger points. I have them and they are on the shoulders and close to the spine. Maybe that is what you have.

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