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-   -   How many members have fibromyalgia? (https://www.quiltingboard.com/general-chit-chat-non-quilting-talk-f7/how-many-members-have-fibromyalgia-t37622.html)

Beverly 02-24-2010 04:21 PM

Thanks for the welcome, I am a veteran addict, third generation, raised under the quilt stands, true quilting fanatic. It is so interesting to read about other quilters and their fibro experiences. NAET is kind of weird, but so many people have been helped, including me, that I am going to stick with it. I didn't think I had allergies at all. I am not allergic to pollens, grasses, weeds, obvious allergens, but very allergic to foods, chemicals. Also, like another commenter, I was even allergic to my husband. NAET treatments have evolved. I traveled to a lady that used accupuncture and avoidance.( you had to avoid the allergen for 24 hours.) She charged $70 a visit. A chiropractor in my town certified for NAET and does not use needles or avoidance. His fee is $30. If you try the treatments, plan on at least 20 treatments. It's not that bad if you think of people who get allergy shots every month for the rest of their lives. You can't put a price on getting your life back! I was surprised to see how many NAET clinics there are around the country.

sarahelloyd 02-24-2010 04:58 PM

Hi everyone, yes I have fibromyalgia too, and am feeling like *******, too bad to describe except that i don't want to move, the only thing that keeps me going at the moment is the need to sew. I can't believe so many people are affected. Have you heard about Fibroducks?

zz-pd 02-24-2010 05:08 PM


Originally Posted by sarahelloyd
Hi everyone, yes I have fibromyalgia too, and am feeling like *******, too bad to describe except that i don't want to move, the only thing that keeps me going at the moment is the need to sew. I can't believe so many people are affected. Have you heard about Fibroducks?

No I have not. what is it?

bisque 02-24-2010 05:21 PM

I had it and a friend who is ten years older and looks ten years younger and in fit shape said, it takes years of oversue and abuse to damage your muscles and cause that much pain. Try this over the counter Vitamin E and Selenium TOGETHER every single day! You won't notice at first, but in a few months I realized it when someone offered to help me carry a heavy basket because of my pain in arms (I then realized, my arms didn't hurt at all anymore) It did work for me. Thats all I can say. It never came back.

AnnaK 02-24-2010 07:55 PM

I'm going back to my rheumatologist! You ladies are describing my symptoms, especially this last week. I am always exhausted by 7 pm, have trouble sleeping and this week I was achy all over and expected to have the flu the next day and nothing happened. I am improving a bit but very concerned. My Rh did bloodwork last year and said everything came back normal. He put me on Vit D therapy and wants another blood series after I'm done with the Vit D. Thanks all of you for sharing your stories.

dsj 02-24-2010 10:39 PM

I am a pain sufferer also along with my mom, sister, and gm who has passed but she suffered terrible with it. Stress is a huge trigger. I have never felt well even as a child. I have always felt like I have been beaten by something. My sis was the same way. She relies on all the medication to help manage it. My mom and myself stay very active, exercise and watch our diets. We manage the pain that way. My friends tease me about being an exercise freak but it helps me so much. If I don't move about I get so stiff and sore. I saw my gmother struggle and she was addicted to pain medication and nerve medication for her whole life, she was bedridden when she passed. It was so sad to see her like that. I went to a support meeting for fibromyalgia and chronic fatigue syndrome, there were people who were wheelchair bound from it. I refuse to let it take hold of me like that, so I stay as active as I can to help manage it. The only medication that seemed to help me was Celebrex, Meds are so expensive I can't afford them. Exercise is pretty inexpensive so that's how I manage. It doesn't take the pain away completely but I feel so much better than I ever have. I run and kickbox about 6 days a week. Pilates and yoga helps too. I know a lot of people that can't even stand the thought of exercise with the pain they are in but for me it is my medicine. My heart goes out to all of you who have this pain syndrome it is no fun but you know the other medicine that helps me too is quilting. I am a hand quilter and it helps me destress.

nellebelles 02-24-2010 10:46 PM


Originally Posted by Ditter43
Oh Nellie,
How do you do it? I hope you have family to help out when you are both down. So often when I have a flare up, I'm not sure for a while if I am getting the flu or a cold. After several days I can tell the difference. If my husband were to be down at the same time, it would be harder for us both..(more for me probably). I hate to hear a grown man whine...
I have been so fortunate that my dh is strong and in relatively good health. He works out at the gym several times a week and that has helped him a lot. I wish I could do that but some days walking to the mailbox is exhausting!
Not a good situation to be in. when I was working,I had home health clients in similar situations.It was tough sometimes.
This just proves to me, there really is always someone in a worse situation then we are. My heart goes out to you. I am sure you have both had to develop a lot of coping skills over the years.

I wish you a good nights sleep,

Ditter

Hi Ditter,
Thank you for your concern and compassion. Even though we have lots of stuff to deal with, my DH and I keep a very positive outlook. We've made a conscious decision to LIVE everyday--no matter what. We do have family nearby, and a very active church family--both of which will do whatever we need to help us through our worst times. We try to plan for the "down" days by making meals ahead and keeping stuff around that we can do that doesn't take much energy. Even though we both live with lots of pain, we find joy in each day.
I hope that we can all be of help to each other through this topic post. I know I have learned some things from this post that I didn't know before. Like itching--DH and I both have that from time to time--I didn't realize it could be related to the fibromyalgia. I have long suspected allergies to be part of the cause of this nasty disease, too.
I hope we all get a good night's rest--and pray that there will be relief for all of us at some not too distant time.

Quiltlady238 02-24-2010 10:51 PM

I have had fibro for close to 15 years. Flare-ups cause me to even have hard times walking. I truly understand your pain and how it can really get you down. I am on constant pain meds and yet I do not always get relief. I am home when it acts up and that is how I got interested in quilting. When I am having bad days my quilting keeps me sane and I have a hobby to help me get through those days. It helps my days pass with accomplishment and is very therapeutic for me. It helps me to get through the hardest days and helps me forget the pain some too. I may get housebound, but my quilts help me smile!
Debbie
In Ohio

Quiltlady238 02-24-2010 11:39 PM

After reading all the posts I see that many of you suffer alot of things I am. The fiber fog is horrrible. I ake dilaudid for pain and it is one of the strongest pain pill you can possibly get and I wish I didn't have to. I take Zanaflex because flexeril does nothing for me. I have COPD, Diabetes, IBS, Lupus, and other medical problems and on 16 meds. I take pills for depression too. I am lucky to sleep 3 hours at a time. I can not sleep for anything. My legs are bad. I have to use the scooters to shop. I walk with a cane too. My legs get spasms severe, burning and painful feet, back , arms..you name it. I just got SSI through as there is no way I can work. I never know what tomorrow will bring and can not even try to make plans because I may be down that day. I try to watch what I do to prevent pain. Walking is painful and I use to be a very active person and it is hard when I spend 75% of my time home in the recliner or my hospital bed. I do better in the summer. But I try to keep moving. My three children are grown..my 20 year old has FMS too but is doing great! I love spending time with my grands (Got a new baby girl three days ago!)..and my faith in God keeps me going. He is with me and helps me through those days when otherwise I would give up. Prayer helps! Thanks to those with suggestions as I have learned alot from those of you with advice! Quilting is my second love, I love it! When my legs get me down.I get quilting! :)
Debbie
In Ohio

sarahelloyd 02-25-2010 03:39 PM


Originally Posted by penny doty

Originally Posted by sarahelloyd
Hi everyone, yes I have fibromyalgia too, and am feeling like *******, too bad to describe except that i don't want to move, the only thing that keeps me going at the moment is the need to sew. I can't believe so many people are affected. Have you heard about Fibroducks?

No I have not. what is it?

Fibro Ducks is working through Facebook on both sides of the Pond to enhance awareness of Fibromyalgia, you get a little duck and take pics of wherever you go with it among other things. I think they are doing a great job.


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