gable428 Posted July 15, 2012 Report Share Posted July 15, 2012 Just wondering how many of you suffer from fibromyalgia/chronic fatigue syndrome. I've been dealing with this for years and I feel like it's getting worse as I get older. I'm 49 and most days feel like I'm 99! The chronic pain 24/7 gets old real fast. Most days I feel like my quality of life just isn't what it used to be. I'm constantly exhausted and never feel rested. Any ideas, suggestions, or words of wisdom would be appreciated! Link to comment Share on other sites More sharing options...
Kay Anderson Posted July 15, 2012 Report Share Posted July 15, 2012 Learn to say "No". When you need to rest, do it! If anyone questions you on your response, invite them to live in your condition for a few years! If you need medications to function, take them and don't ever feel bad about it. My son has MS, I and my husband have Fibromyalgia, it doesn't show and people often don't understand. Link to comment Share on other sites More sharing options...
aleksich Posted July 15, 2012 Report Share Posted July 15, 2012 Gable, I too was diag. with fibromyalgia about 7 years ago. I did some research and found that by going gluten free, I have been pain free for 4 years. It is the first line of medicine in Europe. Try it, it won't hurt you and you will know with in a week it is going to work for you. With in the first 24 hours my headache was gone and I don't get them any more. I can get hugs from my children without wanting to cry. That was worth it to me. I am sleeping much better. Gluten is in all types of foods, so reading labels is a must. It is in salad dressing, in resturant oils to stablize it, so ask lots of question when eating out. Just beware that gluten free subutite foods are higher in calories. I basically eat meats and veggies once in awhile as a treat I have a gluten free bread at Subway. I hope that you find some relief and help out there. I tried all kinds of meds before going gluten free. Link to comment Share on other sites More sharing options...
Corey Posted July 15, 2012 Report Share Posted July 15, 2012 Hi Gable, I went to our family doctor 6 months ago because my body started feeling very tired (this was going on for few years, thought its normal for 60 year young woman) After sending me to blood tests, lab works & imaging, the result is hyperthyroidism. So the endocrinologist I am seeing now prescribed the medicine that steadied very quickly my heart rate that used to beat fast once in a while. Corey Link to comment Share on other sites More sharing options...
mamu Posted July 15, 2012 Report Share Posted July 15, 2012 I have a friend with fibromyalgia. Her blood work showed that she was really low on Vit D...normal was around the range of 72 and she was 8 !! As soon as she started taking about 5,000mg of Vit D, she found out that her fibromyalgia almost disappeared. I don't know if this would help at all...but if you decide to try it you should see results in about 2 weeks. I agree...gluten is in everything and trying to eliminate it from your diet is fairly hard...but well worth it. Since they have found gluten to be the root of all sorts of aliments from allergies to migraines to wieghtgain .. you never know if you have a sensitivity to it until you try to eliminate it from your diet. You just might start feeling so much better and you could lose weight too! Link to comment Share on other sites More sharing options...
Sheri Butler Posted July 15, 2012 Report Share Posted July 15, 2012 I and Jackie Lathem both have chronic Fibromyalsia. We have good days, and bad days. The pain tho..is 24/7. I purchased an infra red sauna that I sit in on my bad days. The pain goes to ZERO when i'm in it! It circulates the blood, calms those nerve endings that cause the pain. In the winter months, I'm in the sauna almost every nite. I notice that when the weather changes, the fibro's worse. I took the blood test that tests for all 500+ strains of arthritis, I have ZERO...so, anyone thinking it's artritis...NOPE! I love sitting out in the sun, (sun has infra red rays too remember...) and i'm pain free, usually when i'm in my pool, or laying outside, or sitting in the warm sun. I was on Celebrex for over 5 yrs, and got off that about 5 yrs ago. I figured, that was long enough to be on meds, and i'll live with the pain. Try the warm method. I have a Sauna-tech infra-red, (no moist sauna...dry heat sauna). I also bought a Jade Stone Infra-red heating pad $200, that I can wrap around me feet, back, anywhere, if I am in need of a quick "spot" treatment. Works wonders! Look into over-dosing on any vitamins before you consume. Our bodies only accept a certain dosage, the rest does not process thru our bodies. I did an extensive search on that and the vitamin drink thing, people saying curing alot including fibromyalsia. Most of it's like placebo. . Mind over matter...which...dont get me wrong...does help sometimes! I feel for you. Prayers for you for more comfortable days, than uncomfortable ones. Quilted hugs, Link to comment Share on other sites More sharing options...
junebug_one Posted July 15, 2012 Report Share Posted July 15, 2012 Hi Gable, I too sufer from Fibromyalgia, I tried a lot of different things and this is the formula that has help me. Mega Red omega 3, it has the Krill oil in it. Dr.OZ recommends this one. COQ10, I use 600 mg. My Daughter uses 300 mg. I take 5000 of vit D3 , because my D is low. You might have yours checked. 1000 units of vit C. I also take Doctor's choice 45+ vitamins for women. This has taken my pain away and has given me more energy . I hope I hope this might help . I have followed this for years and wouldn't be with out it. Carolj. Link to comment Share on other sites More sharing options...
Stagecl Posted July 15, 2012 Report Share Posted July 15, 2012 I don't have fibromyalsia, but I do have a bone spur on my spine which causes me pain everyday. One of these days, I'll do something about it, I am just not wild about surgery in such a delicate area. So I do have empathy for pain. I can't sit for long periods of time without pain in my legs or hips, some mornings I can barely bend over without pain until the bones loosen up and at night going to sleep is not comfortable no matter what position I am in. I find that doing core exercises helps and relieves most of the pain. I wish you the best of luck in finding relief of some sorts. I agree about trying a gluten free diet, if it has helped one person it may help you. Dining out many places do offer gluten free menus but you need to ask. I have a friend who is on a gluten free diet she asks all the time if a menu is available. Link to comment Share on other sites More sharing options...
K. Szymaszek Posted July 15, 2012 Report Share Posted July 15, 2012 Just a thought about Vit. D. Make sure your Dr. is checking your Vit. D levels via blood tests at 6 month intervals. Link to comment Share on other sites More sharing options...
lnieland Posted July 15, 2012 Report Share Posted July 15, 2012 Originally posted by aleksich Gable, I too was diag. with fibromyalgia about 7 years ago. I did some research and found that by going gluten free, I have been pain free for 4 years. It is the first line of medicine in Europe. Try it, it won't hurt you and you will know with in a week it is going to work for you. With in the first 24 hours my headache was gone and I don't get them any more. I can get hugs from my children without wanting to cry. That was worth it to me. I am sleeping much better. Gluten is in all types of foods, so reading labels is a must. It is in salad dressing, in resturant oils to stablize it, so ask lots of question when eating out. Just beware that gluten free subutite foods are higher in calories. I basically eat meats and veggies once in awhile as a treat I have a gluten free bread at Subway. I hope that you find some relief and help out there. I tried all kinds of meds before going gluten free. I'm glad to see that going gluten-free has worked for you. I have a friend who was diagnosed with fibro about 20 years ago and was in nearly constant pain. Since going gluten free two years ago, the pain is totally gone, she's lost weight, and is playing tennis again. And she's a much happier person. Good luck in finding some relief! Link to comment Share on other sites More sharing options...
gable428 Posted July 15, 2012 Author Report Share Posted July 15, 2012 Thanks everyone for all the great suggestions. I'm definitely going to figure out this gluten-free stuff as it sounds like it works for so many people. Thanks again!! Link to comment Share on other sites More sharing options...
Susanri Posted July 15, 2012 Report Share Posted July 15, 2012 I would check your D too, I am 49 too and was beginning to think I had Fibromyalgia, I was tired more like exhausted I thought I had Arthritis starting, my hips aches, everything felt like a chore. during my regular blood work my D levels were very low and was prescribed D what a relief!! I feel so much better now. I am back to running a daily 5k, housework is easier I have gotten back to quilting. most of the aches and pains have started to go away. I never would have thought I could be low on D I play golf, garden and get plenty of sunlight. Good luck find relief it really is awful to suffer. Link to comment Share on other sites More sharing options...
Conny Posted July 15, 2012 Report Share Posted July 15, 2012 I was also diagnosed with Fibro many years ago. Last year I found out I actually have Lyme Disease!!!!!! Something that Health Canada basically says is nonexistant here. I was referred to a Canadian webside www.canlyme.com where I checked out my symptoms on their symptom list. They recommend if you have been diagnosed with Fibro and have 10 or more symptoms on their list you should be tested for Lyme Disease. I had 47! I had to send my bloodwork to the States because testing is so inaccurate. The lab I dealt with in the States specializes in Lyme. I have also gone Gluten free and that has made a tremendous difference in feeling less bloated and WAY less headaches. I'm in the middle of treatment and now I'm just waiting to see if the "Fibro" clears up or do I in fact have Fibro as well. Whatever you do don't let any doctor tell you that you can only contract Lyme disease in the Northeastern States. That is simply no longer the case. I live in Alberta, Canada and when I figured out how long ago I contracted it and at that time I was actually living in northern Alberta. I would love to share more information with you if you have any questions. It may be worth persuing?? It has certainly given me hope that I may be able to have a life without constant 24/7 pain. Conny Link to comment Share on other sites More sharing options...
Farmland Quilter Posted July 16, 2012 Report Share Posted July 16, 2012 When I first found out I had fibromyalgia I asked God what I should do and went straight to the computer and the Internet. I believe God led me as I immediately found Dr. St. Amand's website. I checked his protocol out with my local dr. and started following his protocol. I'm doing great. I used to use the electric scooter to buy groceries because I was too weak to walk around the grocery store. I used a wheel chair and/or a cane if I had to walk very far. Four years ago I started driving the combine to pick corn again. And we started the long arm quilting business and our grandson Steven moved in with us, if you remember. DH and I are 62. We did add the IQ to our Millenium just to hopefully enable us to keep quilting longer. Check out all the information at. www.fibromyalgiatreatment.com You have nothing to lose by trying the protocol and unfortunately nowhere to go but down. Instead, I have been steadily improving. Fibrofog is gone, pain minimal, strength would be even better if I would just exercise. Eliminating the gluten couldn't hurt either and would not interfere with the protocol. I urge you to at least look into it. Link to comment Share on other sites More sharing options...
Ferret Posted July 16, 2012 Report Share Posted July 16, 2012 bounce Link to comment Share on other sites More sharing options...
Stagecl Posted July 16, 2012 Report Share Posted July 16, 2012 I just remembered... There is a bakery down the road from me which specializes in gluten free products. It is 3fellersbakery.com The lady who started it is allergic to gluten and originally started selling frozen cookie dough from her home. I haven't had their cookies, but I have had their cupcakes which where very good. If your looking to satisfy that sweet tooth check out her site. Back to quilting. Link to comment Share on other sites More sharing options...
Dustee Posted July 16, 2012 Report Share Posted July 16, 2012 I feel for you. I was diagnosed about 12 years ago. I deal with fybro pain and fatigue 24/7. I have 23 grand and great grand children and I love their hugs but most days I can't stand to be touched. My family doesn't understand the pain I live with. I agree that weather changes and cold increase the symptoms. I am cold all the time. I can't handle the air conditioning in the summer and only go outside in the winter when I absolutely have to. I find the heat is the best remedy. I spend a lot of time in the sun, the hotter the better. I sit in the hot tub with the jets off. The jets aggrivate the nerve endings and tear me up. I sleep with a heating pad on my feet and shoulders. I use lots of pain patches. I haven't found a rub that goes deep enough to reach the nerves. I am allergic to the meds they have for fybro. My cousin lost weight and alot of her pain subsided. I haven't been successful at the losing weight part. I am sure I need to exercise more but the exercise seems to stir up even more pain. I am going to look into the gluten free diet and have my vitamin D checked. I am also going to check into the Sauna-tech infra-red sauna and the Jade Stone Infra-red heating pad. I will try anything to relieve even some of the pain and fatigue. I hope you find relief from your pain. There is lots of good advice in this post. Link to comment Share on other sites More sharing options...
gable428 Posted July 16, 2012 Author Report Share Posted July 16, 2012 Stress really makes my pain worse. I have a very stressful job and have been asking if I can work 4 days a week rather than 5. I'm waiting for an answer. If I don't get one soon, I will ask again. I feel like all my energy goes into my job and once I get home, I'm too tired to do anything. I have gotten to a point where I feel like I am existing rather than living life. Thanks for the additional responses! Link to comment Share on other sites More sharing options...
sueky1 Posted July 16, 2012 Report Share Posted July 16, 2012 I am so encouraged with this post! I had Polio when I was 6 and about 40 years later, I was diagnosed with Post Polio Syndrome (PPS). Unfortunately, there apparently isn’t any help for the constant pain and fatigue I have been battling for the past 22 years. PPS has been closely associated with fibromyalgia symptoms----Pain, fatigue, weakness, etc. I search internet constantly for any updates for PPS. There doesn’t seem to be much research because we are a “dying breed”----the last of the Polio survivors. I have had to give up quilting this past year because of fatigue and pain. My “Milly” is pretty much in retirement. I bought my Milly in 2001 because I could no longer hand quilt and wasn’t ready to give up quilting. I have several tops to be quilted and am trying to talk my sister into quilting them for me. I miss it so much. Hopefully, I can get some relief by following these suggestions & get back to a little quilting. I wish there were more web sites for interaction among Fibromyalgia & PPS patients where we could share our stories and suggestions as to what works for us. I would never have thought I could find a glimmer of hope on a quilting chat forum! I know I will be spending my day researching gluten & vitamin D. Link to comment Share on other sites More sharing options...
Conny Posted July 16, 2012 Report Share Posted July 16, 2012 I have worked half time for about the last 6 years since I could no longer work full time. That does make a difference. It leaves some energy for you and your family. I was told that the main reason that going gluten free helps is that gluten actually causes inflammation within the body and therefore causes pain. I swear by going gluten free. I also feel less sluggish. It takes a bit of time to find good gluten free products and the first couple months can be expensive as you replace things in your kitchen, but it is definitely worth it! Link to comment Share on other sites More sharing options...
Joy Posted July 16, 2012 Report Share Posted July 16, 2012 I have sjorgens syndrome and fibroalgar my pain is 24/7 for the past 3 years I am sick to death of it and I am only 49 as well I think What am I going to be like at 60 I am on a pain patch which does very little nothing else works Sometimes I think life sucks Link to comment Share on other sites More sharing options...
Susanri Posted July 16, 2012 Report Share Posted July 16, 2012 Here's a great blog for gluten free. http://glutenfreeonashoestring.com/ Really really yummy, great resource, wonderful savings Along with vitamin D going gluten free has helped too. Link to comment Share on other sites More sharing options...
Jenquilts Posted July 17, 2012 Report Share Posted July 17, 2012 It's really a shame that it seems so many quilters have auto immune disorders or pain disorders..I'm not certain if fibro is categorized as autoimmune....but a lot of the things that help people suffering from it are similar to what helps me (an RA sufferer)and it seems to have the same triggers(stress, lack of sleep etc) Im interested in the infrared sauna...how much does that cost and can the infrared be harmful if you get too much exposure? I really need to go gluten free to see if it helps but I just haven't gotten the willpower. I hate taking all the drugs:( Link to comment Share on other sites More sharing options...
whitepinesquilter Posted July 17, 2012 Report Share Posted July 17, 2012 I recently had my blood drawn, and my vitamin D was again very low, at 9. This is the second time in a year that I've become very deficient. So today I picked up the prescription 50,000 iu Vit. D to take 3x a week for a month and then will be retested again. I work outside alot so I get lots of sun so it isn't that. My doc says as we age it becomes harder for our body to utilitize it as well as when younger. Both times I've been deficient I felt something wasn't right because I was so darn tired and drained all the time. Btw, I don't have fibromyalgia, but I have had two back surgeries, do have arthritis and some stenosis. I hurt from this most all the time. But once I got my vitamin D levels back up there I actually had more energy and stamina to deal with my pain. Once I get this treatment done I'm sure it'll be like last time and I'll feel so much better! Being low in D really does affect how you feel and move around. If you haven't had it tested, I recommend it be done, even if you think you drink enough milk and get enough sunlight. Link to comment Share on other sites More sharing options...
gable428 Posted July 20, 2012 Author Report Share Posted July 20, 2012 I definitely don't drink enough milk and I don't get enough sunlight. I work in inside all day and don't usually go outside that much because of allergy problems. I will get my D tested. I'm just sick of coming home from work and going to bed by 7pm because I'm so exhausted and in pain. It gets old!! Link to comment Share on other sites More sharing options...
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