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Here's to Your Health:  fibromyalgia  |
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Beverley
True Blue Farmgirl
2707 Posts
Beverley
atlanta
Michigan
USA
2707 Posts |
 Posted - Feb 08 2012 : 8:23:20 PM
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I was just diagnosed with this. Does anyone else have this? The Dr. Started me on a new drug and seems to be helping so far. Just need other info if anyone has some...
Folks will know how large your soul is by the way you treat a dog....Charles F. Doran
beverley baggett
Beverley with an extra E...
https://sites.google.com/site/bevsdoggies/
http://bevsdoggies.blogspot.com/ |
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Sharon Denise
True Blue Farmgirl
211 Posts
Sharon
Temple
TX
USA
211 Posts |
Posted - Feb 09 2012 : 06:37:09 AM
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Yes, I was diagnosed last spring after a lifetime of being told I just had bad allergies, it was all in my head, or I was just depressed with an anxiety disorder. I'm sorry to hear you suffer from fibro, but I'm glad you have answers. I tried taking the drug Savella but had a bad blood pressure reaction. I won't take any of the other drugs for it, so I try and control it with diet and lifestyle changes. I had great success cutting out caffeine. It builds up in your body and affects people with fibro differently. We have a much more severe "crash." I used to live on iced tea. I weaned myself down to iced green tea and decaf iced tea. Now I only drink roasted chicory if I want a coffee flavor and caffeine free herbal teas. Remember "decaf" does NOT mean no caffeine, just significantly less. I also don't eat refined sugars or high fructose corn syrup. The sugar also brought on fatigue, and the corn syrup makes me ache. I found out I am also gluten sensitive. It brings on my fibro fog and some fatigue. The IBS symptoms have mostly cleared up since cutting out beef and pork. I still have some issues with poultry, but none with fish. Fibro is different for everyone, so it will be tricky discovering what your triggers are. I would also avoid all diet sodas with phenylalanine in them. Diet Rite is the only diet soda I will drink, and only sparingly. Be sure you take a good natural supplement (one that absorbs easily and isn't riddled with artificial ingredients). I know there is a thread on here somewhere where ladies share things that have worked for them. Use the search function at the top of the page and search "fibromyalgia." You should see it. Pages and pages and pages of good stuff on there. Good luck, and let me know if you need anyone to talk to. It can be really overwhelming. HUGS
Farmgirl Sister #3754
www.facebook.com/bellcountybelles
http://bellcountybelle.blogspot.com/
http://pinterest.com/bluemonarch/
"There will come a time when you believe everything is finished. Yet that will be the beginning."
~Louis L'Amour |
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Beverley
True Blue Farmgirl
2707 Posts
Beverley
atlanta
Michigan
USA
2707 Posts |
Posted - Feb 09 2012 : 10:35:16 AM
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thanks for the info. I have known for quite a while that I could not drink caffeine, and it worked out well that I do not like coffee. and I have never liked diet pop either. so that was easy for me. I just started on savella and so far it is helping. I have only had mild reactions that went away within a day or two. I am so glad that the drs have come to see that this is not just a "in your head" problem , like they used to think. I have all of the symptoms that they show online. I will search for the other threads. thank you for that info..
Folks will know how large your soul is by the way you treat a dog....Charles F. Doran
beverley baggett
Beverley with an extra E...
https://sites.google.com/site/bevsdoggies/
http://bevsdoggies.blogspot.com/ |
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Beverley
True Blue Farmgirl
2707 Posts
Beverley
atlanta
Michigan
USA
2707 Posts |
Posted - Feb 13 2012 : 3:34:00 PM
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well the savella has been giving me quite a few adverse reactions so I am weaning back off of it. so , this will not be working for me.
Folks will know how large your soul is by the way you treat a dog....Charles F. Doran
beverley baggett
Beverley with an extra E...
https://sites.google.com/site/bevsdoggies/
http://bevsdoggies.blogspot.com/ |
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Sharon Denise
True Blue Farmgirl
211 Posts
Sharon
Temple
TX
USA
211 Posts |
Posted - Feb 14 2012 : 10:43:11 AM
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I'm sorry to hear that, Beverley. :-( For me, it was the norepinephrine stuff that my body couldn't handle. I can't tolerate depression meds, either, which is what Cymbalta is. I've had good luck just with the dietary changes, knowing I'm not crazy, and starting to advocate for myself when I need to rest. I really hope things will start to even out for you. Those strong meds can do more harm than good!
Farmgirl Sister #3754
www.facebook.com/bellcountybelles
http://bellcountybelle.blogspot.com/
http://pinterest.com/bluemonarch/
"There will come a time when you believe everything is finished. Yet that will be the beginning."
~Louis L'Amour |
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Beverley
True Blue Farmgirl
2707 Posts
Beverley
atlanta
Michigan
USA
2707 Posts |
Posted - Feb 14 2012 : 10:59:42 AM
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yea I got quite a few but the room spinning was the worse so I had to stop. My head is still kinda woosing feeling but I feel better than I did on the savella. so I am done with drugs too..
Folks will know how large your soul is by the way you treat a dog....Charles F. Doran
beverley baggett
Beverley with an extra E...
https://sites.google.com/site/bevsdoggies/
http://bevsdoggies.blogspot.com/ |
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annielaurel
True Blue Farmgirl
912 Posts
nancy
fernandina beach
florida
USA
912 Posts |
Posted - Feb 15 2012 : 05:45:53 AM
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I suffered with cronic fatigue syndrome for so many years. I had so many tests because the drs back then didn't know what it was. Then when I had a blood test and my liver enzymes were so high they thought I had mononucleosis so I had my first liver biopsy. No, that wasn't it. So they tested me for Copper problems. Then they wanted to know if I was taking drugs. No, I didn't take drugs. So I had another liver biopsy and they just said it must be mono. Finally, in 1991 after 4 years there was a test for Hepatitis C and that is what I had. I had had Hepatitis C. In order to get treated I had to have a 3rd liver biopsy. I took Interferon shots for 3 sessions of 1 year each session over a period of 5 years to rid myself of this disease.
I still have the Cronic Fatigue Syndrome but my aches and pains are minimal. I will always have the brain problems I think. I have a hard time with word definitions and concetration. I get tired very easily and have to nap every day. Otherwise I am in excellent health. |
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Beverley
True Blue Farmgirl
2707 Posts
Beverley
atlanta
Michigan
USA
2707 Posts |
Posted - Feb 15 2012 : 10:48:35 AM
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when they tried me on a statin for cholosterol it messed with my liver and so I had to be taken off of that but it took about 6 months for the enzymes to come down to normal. They were never really high and I had an ultrasound that also found fatty liver. but right now my liver is in the normal range so thank goodness for me it is nothing that is cause my liver problems. I have always had problems taking new prescriptions cause my body really does not like new stuff. right now I am on lopid for my cholestroyl and on a thyroid med too for low thyroid. I also take paxil for OCD so I am not surprised my body did not like the savella. This is my third day without being on it and I am feeling much better. MY biggest problem was that I am in california visiting family and I live in michigan. So, talking to my dr was not very easy since it got its worse on sat. so I just kinda did what I felt was best and went with that..
Folks will know how large your soul is by the way you treat a dog....Charles F. Doran
beverley baggett
Beverley with an extra E...
https://sites.google.com/site/bevsdoggies/
http://bevsdoggies.blogspot.com/ |
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sherrye
True Blue Farmgirl
3775 Posts
sherry
bend in the high desert
oregon
USA
3775 Posts |
Posted - Feb 17 2012 : 07:46:45 AM
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hi there girls, i only have a minute BUT i wanted to share a little also. through the years i was always kinda sick. as a child i had behavior challenges. i could not sit still i still cant. well as i got older i became more sensitive to things in my environment. we had a in ground pool. i would get sick from swimming. i was first diagnosed with epstein barr, then depression, fibro, chemical sensitivity, finally for me diagnosed with porphyria. it is a deficiency of the enzymes required to make red blood cells. the porphyrias overlap with ebv. and fibro. a lot of the same mechinisms are in play. the symptoms overlap a lot. so intolerance to pharmacy drugs and fragrance are common. as is cleaning supplie, personal care products. things you use every day can cause a load to build and the end result is pain and fatigue. i share this only to help. i have studied chemical sensitivity for over 20 years now as long as i stay clear of those triggers i do fairly well. i would be happy to share any info. there is a great web site. the chemical injury information network they just came out with a good resource book. they recieved the equivalent of the nobel prize a few years back from germany. very reliable. hope this helps sherrye
the learn as we go silk purse farm
farm girl #1014
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ljg
Farmgirl at Heart
8 Posts
laura
verona
mo
USA
8 Posts |
Posted - Apr 10 2012 : 08:24:34 AM
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| ive suffered with fibro for over 15 yrs. the drugs seem to have more side effects . cymbalta caused changes in liver test. ive found the more you keep moving the better of u are. less i move the more pain i seem to have . i am giving mary janes kumbacha recipe a try ? last issue. blessings |
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bananachicken
True Blue Farmgirl
67 Posts
Ginny
Ohio
USA
67 Posts |
Posted - Apr 11 2012 : 8:27:12 PM
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I am a Nationally Certified Massage Therapist and would like to throw in there that Massage Therapy can also help with Fibro. I have been treating clients who suffer from fibro for over 8 years with wonderful success. It helps relieve muscle tension, aches, pains and that general fatigue. Also, gets everything moving, boosting the immune system and increasing circulation. Not to mention general relaxation and stress reduction. I really encourage you to try to find a CMT who can help in your path of alternative therapy. Hope this helps!
http://www.fibromyalgia-symptoms.org/fibromyalgia_massage.html
"I should be having tea right now."
-Lady Annalía Elisabet Catherina Tristán Llorente |
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Beverley
True Blue Farmgirl
2707 Posts
Beverley
atlanta
Michigan
USA
2707 Posts |
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Lexi Lavender
True Blue Farmgirl
92 Posts
Lexi
Bangor
Maine
USA
92 Posts |
Posted - May 01 2012 : 5:03:20 PM
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Hi Beverley, Sharon, Sherrye and Laura:
I also have fibro. I found mine out when we lived out West, I had sleep problems and pain, but then as summer came on the last season we lived there, I would throw up everynight in the heat.
Its a few years down the road, we live in Maine, I've been through many rounds of drugs and doctors, but I have learned that for me, a combination of things works best. I walk and stretch every day. I get chiropractic and accupuncture frequently and massage occaisionally. Hot baths are great. I've read Tai Chi is really good for fibro but haven't given it a real try.
For meds I take Effexor and Topamax which take the edge of the pain, enought so I can get around, and I avoid narcotics for all the side effects they cause.
Fortunately my husband is very patient and helpful!
I hope this helps!
Silverweed-Alexis...Farmgirl#4034
A weed is just a plant that no one has found a use for yet... |
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Bonnie Ellis
True Blue Farmgirl
2474 Posts
Bonnie
Minneapolis
Minnesota
USA
2474 Posts |
Posted - May 01 2012 : 7:20:47 PM
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Hi everyone. I'm sorry to hear you have fibromyalgia. I have had it since 1990 and now also have arthritis. What helped me (after going to a clinic which specializes in fibro), is to eliminate about half of my own stress-causing activities I could. I then had kids at home. That was a big shock to me because I like to do everything. It's really hard but it helps a lot. I really can't tell now when there is a flare whether it is arthritis or fibro, but try to relax and have a cup of herbal tea. I set my timer for 1/2 hour intervals and try to change activities (standing, sitting, sewing, painting, etc) as much as I can. I can still enjoy some of the same activities but I do them for a shorter period at a time. I am choosing things that are more calming. Asking for help with your chores really help. Others are more willing to help if you ask them to do a specific chore. Happy, healthy healing to all of you.
grandmother and orphan farmgirl |
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AnnieinIdaho
True Blue Farmgirl
437 Posts
Annie
ID
USA
437 Posts |
Posted - May 01 2012 : 10:49:26 PM
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Hi Sisters,
Well, I have had fibromyalgia since 1989. The first 5 years it was coupled with Chronic Fatigue and I was in bed unable to walk and slept 18 hours for five years. Then the next phase began, where I was better in some areas, but it cascaded into other health issues. In the more recent years Lyrica worked, but I was allergic to it and gained 30 pounds, so I had to stop using that. Wellbutrin was the most helpful for me, but then I no longer benefited from it, so went off of that due to liver numbers going high. My doctor now has me taking ALA because it helps with nerve endings and NAC because it helps with the liver and at a blood cellular level. I also take Vit. D and adjusted my thyroid to include T-4 and T-3. I am so much better! Over the years I have found my membership in the Fibromyalgia Network to be so useful in understanding the many sides to this syndrome. Now, they have grown into a wonderful support network with evidence based information from the research they sponsored. Take a look at http://www.fmnetnews.com They offer a membership for $28 annually and in-depth ad free quarterly magazines are included in addition to their web information. Their latest publication, "Why You Have So Many Symptoms: Evidence-based, comprehensive explanations that can lead you to better treatment strategies" is worth every cent ($12.50 in the USA) and offers insight in lay person's language, yet detailed enough to present to your physician on the latest findings. I have learned so many tips and coping skills from them. Their telephone number is 800-853-2929 and address is PO Box 31750, Tucson, AZ 85751 They started back in the day when no one believed FMS was real, yet the cluster group in the Lake Tahoe area and the cluster group in New York showed something was going on. Unfortunately the long, political, and unsavory antics of some folks in the CDC set back the progress of understanding Fibromyalgia. There are some articles on the web regarding this. It is ugly and unfortunate. Keep the faith and remember my 7P's: Planning, Priority, Prayer, Pacing, Patience, Perserverance and Play. Remember, when you are laid up that even wildlife have seasons in their schedules. Do not fret, and listen to beautiful music as this helps alot.
Be where you are in the moment.
Annie |
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Beverley
True Blue Farmgirl
2707 Posts
Beverley
atlanta
Michigan
USA
2707 Posts |
Posted - May 02 2012 : 02:44:45 AM
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annette, thank you so much for that info and your 7 steps. I have learned that I just cannot do what I used to do but I can still enjoy things if I go slow or do a little each day rather than try and do to much and then are laid up for days and can do nothing those days. I try to get out and walk a bit everyday. I was sleeping so much there for a while that I just was not getting anything done but now when I pace myself I do much better. I have also realized that sometimes I must just say no I cannot come or do something that others want me to do cause they I will be in bed for 3 days afterwards or more. so I just try my best to do the things I can and have stopped fretting about the other stuff. thanks again...
Folks will know how large your soul is by the way you treat a dog....Charles F. Doran
beverley baggett
Beverley with an extra E...
https://sites.google.com/site/bevsdoggies/
http://bevsdoggies.blogspot.com/ |
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AnnieinIdaho
True Blue Farmgirl
437 Posts
Annie
ID
USA
437 Posts |
Posted - May 02 2012 : 08:11:12 AM
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Beverley,
So glad you found the information helpful. Also, I know this sounds crazy, but in addition to all of the FMS just a couple of years ago I got allergy tested and it turns out I have oral allergy syndrome. So, for years I was eating foods I was allergic to which I am sure increased my histamines and inflammation. It is the interlukin-6, 8 and 10 that tend to run in excess in fibromyalgia patients according the latest publication I mentioned. Here I was eating oatmeal three times a week and having cantalope, etc...you get the idea of a healthy diet and I was very allergic to those foods and many others. It has been a year since I cut out the foods I am allergic to and I am doing better. I know a doctor may not want to run allergy tests, but it is one more level you can help yourself on if they will do that. Of course, it is costly, but the skin prick tests can uncover if this is playing any role in your health. I was eating healthy foods that are harmful to me for decades. I do not think this caused the FMS however. But interestingly, when I was in bed for those five years I had a cat, Mr. Pogo who sat faithfully on the end of my bed while I slept away. When I would wake up he would accompany me wherever I went in the house. Sometimes he would butt his head against my leg and give a cranky meow and yip, telling me I had to go back to bed. Sure enough, within minutes after that I would get a "wave of feeling ill and fatigue" (you know what that feels like..it is so odd) so he knew before I did. Also, when I would go out on our back deck to at least see the sky he would do the same thing and really almost push me back into the house. Now, it turns out I am highly allergic to oak trees, which surrounded our back deck I would step out onto. It amazes me to this day, how Mr. Pogo picked up on some kind of chemical change in me to warn me to get indoors. Anyway, with all of that...hang in there. I know my doctor told me 500 - 1000 mg of Vitamin D is a must. It has helped, along with 500 mg of magnesium (fibro patients are often low in this) Vitamin B complex liquid drops have helped so much too. I get them at Walgreens. ALA 200 mg 2x a day and NAC 600 mg 2x a day is what my doctor has me on and I have improved immensely. There is a lot of research on ALA and NAC on the web. Even Dr. Oz has info on these. Talk with your doctor about these things. Hope you have health insurance to help with all of this care. Really, I recommend the publication I mentioned. It addresses all the different systems of the body and what is going on with fibromyalgia in them. Your doctor will love it too. It is the most comprehensive explanations to date. Hopefully, they can move forward with the XMRV (its a retrovirus) theory. They are very close to identifying markers in a blood test for FMS. Until that day....read, take some walks even in pain as it moves CoQ10 into your muscles which help make you feel better. That is why exercise is so helpful to FMS patients. You can take CoQ10 100mg 3x day to assist your body in having enough, but you have to walk in order for it to be fed into the muscles.
You are in my thoughts.
Annie |
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Lexi Lavender
True Blue Farmgirl
92 Posts
Lexi
Bangor
Maine
USA
92 Posts |
Posted - Apr 07 2015 : 07:24:53 AM
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Hi all: this is an old posting but I wanted to let you know that I went to a healer who suggested I may have Lyme disease. I was treated with Japanese herbal remedies with great success. I don't take any meds now and except for some arthritis feel better than I have in years. I hope you are doing better as well.
Lavender Lexi; formerly Silverweed
A weed is just a plant that no one has found a use for yet... |
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doll58maker
True Blue Farmgirl
2259 Posts
G
TX
USA
2259 Posts |
Posted - May 11 2015 : 11:26:13 AM
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| My suggestion is to look up Amy Myers, The Myers Way, read her book called The Autoimmune Solution, and also Terry Wahls book, called The Wahls Protocol. Both are available through Amazon Kindle. Wahls also has a TED talk. Both are extremely informative. Hope this helps. These women are both MDs who had personal experiences with diseases that conventional medicine could not cure, and they did their own research to find a better way. The protocols may seem restrictive but really are a walk in the park compared to living with debilitating disease. |
Edited by - doll58maker on May 11 2015 11:31:03 AM |
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Beverley
True Blue Farmgirl
2707 Posts
Beverley
atlanta
Michigan
USA
2707 Posts |
Posted - May 11 2015 : 12:59:52 PM
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I will check out those books. Thank you for that info. I now have a way of doing things too. I can sit for too long doing the same task, so, I do things in small portions of time and then go on to others. I have found out that at least I get that much of it done per day. otherwise, I was getting nothing done cause I would figure I can't do that unless I want to have a lot of pain after. So, I have had to change my mindset mostly! That has helped me. I feel sometimes like I am 80 instead of in my 50's.
Folks will know how large your soul is by the way you treat a dog....Charles F. Doran
beverley baggett
Beverley with an extra E...
https://sites.google.com/site/bevsdoggies/
http://bevsdoggies.blogspot.com/ |
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Song Sparrow
True Blue Farmgirl
1010 Posts
Amy
Talleyville
Delaware
USA
1010 Posts |
Posted - May 11 2015 : 5:35:57 PM
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Hi ladies, I don't have fibro, but I have studied Tai Chi for several years and have had amazing results with my arthritis pain. I could barely get up a flight of steps without hanging onto the banister for dear life and can now walk up steps easily. I used to take anti-inflammatory pain meds rregularly, and almost never take them now. It's been miraculous for me. Just thought I'd share my experience, it is a powerful tool for self-healing. I hope you find relief!
Peace in our hearts, peace in the world
Amy (Sister#6098) www.danaherandcloud.com
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Lexi Lavender
True Blue Farmgirl
92 Posts
Lexi
Bangor
Maine
USA
92 Posts |
Posted - May 11 2015 : 5:41:44 PM
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Thank you Amy. My mom does Tai Chi and swears by its usefulness. Since I am so rural I don’t have any classes near me. Any suggestions about a DVD or someone who teaches online?
Lavender Lexi
Farmgirl #4034
"Unemployment is capitalism's way of getting you to plant a garden." Orson Scott Card
"A crocheted piece is the lovely manifestation of a thought, expressed through hand, heart, hook, and yarn.” Francine Toukou. |
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Christy
Farmgirl in Training
46 Posts
Christy
Manhattan
Kansas
46 Posts |
Posted - Jul 01 2015 : 8:30:51 PM
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I don't have fibro but struggle with lack of energy, migraines, and other health issues. I recently discovered products from Plexus Worldwide and every week I am seeing improvements in my health. I'm so excited to finally find a natural supplement that is helping me. Just had to share in case it could help others.
Farmgirl Hugs,
Christy |
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Beverley
True Blue Farmgirl
2707 Posts
Beverley
atlanta
Michigan
USA
2707 Posts |
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Lexi Lavender
True Blue Farmgirl
92 Posts
Lexi
Bangor
Maine
USA
92 Posts |
Posted - Jul 02 2015 : 09:32:01 AM
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Natural is the way to go, I think... I just found someone who works with natural oils etc... I'll post if it helps my arthritis!
Lavender Lexi
Farmgirl #4034
"Unemployment is capitalism's way of getting you to plant a garden." Orson Scott Card
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Jeanna
True Blue Farmgirl
267 Posts
Jeanna
Franklin
NC
USA
267 Posts |
Posted - Jul 04 2015 : 5:03:38 PM
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I have had Fibromyalgia for 18 years now and so far no medicines have helped. I am getting ready to try Savella for the first time, but some of the comments doesn't make it look too promising. I have changed my way of eating and gotten off of most sugar and have seen some improvement over the last few months. The main point is do not give up and keep moving. If you stop moving you will pay for it. I did for a few years and the pain was so much worse. Good Luck.
Jeanna
Farmgirl Sister #41
Go confidently in the direction of your dreams. Live the life you have imagined.
Henry David Thoreau |
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Here's to Your Health: fibromyalgia |
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fibromyalgia
