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Posted By : HOTFLASHES101 - 9/30/2013 11:14 AM
Hello fellow FMS friends.
The only reason I even feel the least bit qualified to share some of this info with fellow FM is the fact I am now 66 and I have lived with with severe FMS since I was diagnosed at age 21... following a head on collision when a 16 y.o. kid hit me when I was 4 mo. pregnant. He totaled my car as he ran a red light and lost control of his car and drove over the top of my hood, then over the roof of my car and down the trunk end before hitting another truck behind me,which stopped him. I felt blessed to walk away from that. However, I was injured with severe muscle damage. By the 7th month of pregnancy, I was in constant pain all over my body...as I know you all can relate to, too. So, after doc after doc, Chiropractors and my primary Dr. it became clear none of them could determine what was wrong and wanted to wait until after I delivered my baby to treat me.

At 6 weeks postpartum, I was referred to the top Rhuematologist in the medical community then...who the first visit...after pressing on all my tender points...diagnosed me with "FIBROSITIS," which was the medical term assigned to those patients diagnosed with Fibro back in the mid to late 60's thru mid 70's. However, that diagnosis changed in the late seventy's to early 80's, when the Arthritis Foundation got involved with "Fibrositis" and determined " our condition" was not named properly, because the term, "itis", meant in the medical community, "inflammation." That meant, then, that the term "Fibrositis" meant inflammation of the muscles-which was determined to not be true in alll tests performed, but inflammation was seen in "Arthritis or Rheumatoid Arthritis,' and allowed as a medical dx. since " itis" meant inflammation. "Fibrositis" was determined to NOT be an inflammatory process, so the name was changed by the American Medical Association to the term: "FIBROMYALGIA" since "myalgia" means "muscle aching." Which, I know all of us with this painful dx. know just how badly we really do ache: ESPECIALLY IF IT RAINS.

I know before the weatherman knows that snow or rain is coming.

After delivering a healthy daughter after that head on crash, I felt blessed she was ok. I stayed home with her until she turned 2 when I started working as a Medical Assistant for pediatricians from 1970 to 1979 and then I went to nursing school and In 1981, I became a RN and for allllllllllllll those years I was on my feet constantly. I eventually became a Director of Nursing I have never had a day that I have been totalllllly pain free since that head on collision in 1968 I have tried sooooooooo many meds, supplements, and Heaven only knows how many other things I tried,like: Heat treatments, exercises, soaks, wraps, muscle stimulation; steroids (which nearly killed me) ointments, yadda yadda. If anyone wants info about turmeric, what works, what doesn't (for me anyway during these 45 years of living with this dx.), just ask me and i will share.

What has helped me the most given years of research and trial and error? 8 Hour Tylenol=I use EQUATE brand from Walmart, but you cannot consume any alcohol if taking any form of acetaminophen since it can lead to severe liver damage,even total failure.) Tumeric extract seems to work really good for me so I prefer buying that and other supplements from Vitacost.com: 1) Vitacost Tumeric Extract, 900mg.with Bioperine; 2) ENZYMATIC 'Fatigued to Fantastic' Daily Energy B Complex, 120 veg capsule; 3) Vitacost Multiple daily vitamins for Women over 50; plus several other supplements seem to have made a huge difference in my pain levels, plus other supplements, I'd be glad to share, if anyone is interested. While I am never totally free of pain, the difference is I was at 8-9 level of pain most days and now I am around a 3-4 pain level . I hope this is worth sharing with those of you on this site and helps you as much as researching and using these herbs and supplements has helped me to have better days. It surely was a good day it was when I read about Tumeric and the rest of the herbs I now take for my FMS most of which Ido buy from Vitacost or Walmart, (but I wait for best sales) .

Given I was dx. at age 21 and I am now age 66...and worked until I was 65, I can say that despite how terrible we feel most days, Fibro won't kill you...but some days it sure can make you have fleeting thoughts of how you feel so terrible you might wish you were dead, if truth be told. But after lots of research and more self talk, I have become determined to find ways to enjoy my good days and just find ways to live thru my pain.

My hubby who has arthritis and I both sleep on a very fullllllllllllll, hot, kingsize waterbed tho and I just cannot travel because any other bed makes me fee like i am lying atop a bed of rocks.

My wrist hurts now from the keyboard. But I love this site and all of you I hope have more pain free days. I am so glad I found this educational site.

WILL SHARE MORE LATER.
HOTFLASHES101

Posted By : Sherrine - 9/30/2013 1:25 PM
Hi, Hotflashes, and welcome!  You have given great info and we have had this on the forum.  I have tried tumeric in the form of Curamin, which also has several other herbs in it.  It worked well but I find I need ibuprofen now since I also have ankylosing spondylitis.  I, too, use the Equate Tylenol, magnesium malate, vitamin D3, and a prescription muscle relaxer. 
 
I also keep moving, and I see you do too!  Plus I pace myself when doing things.  All of this helps me be in control of my pain.  I, too, and 66 years old and was diagnosed with "fibrositis" back in 1987.  Your info on the name change is absolutely correct.  Your whole post is very good!
 
Be sure to read Fibro 101...the first thread on the forum.  There are links to good info about fibro and, yes, you might learn even more about this illness.  There are links to many things including magnesium malate (malic acid/magnesium) and vitamin D3 and how these work in the body.  I'm still learning new things about this illness.  But doctors are really starting to study this and are trying to figure it all out.  When you first open Fibro 101, there is an interview with Dr. Daniel Clauw who is one of the doctors who has devoted a lot of his life to studying this illness.  Also, you might enjoy the link called Doctors Respond to New York Times Article.  The NYT had an article implying that fibro wasn't a true illness.  Boy, doctors dealing with this came out of the woodwork and the responses are terrific!
 
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
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : HOTFLASHES101 - 9/30/2013 7:53 PM
DEAR SHERRINE,

Thank you so much for your prompt reply and the great information you shared with me. I used to take Malic acid but have forgotten now why I stopped it. DUH! I also take Rx muscle relaxants and quite a few meds my internist prescribes, without which I'd be unable to be active as much as I try to force myself to be. I just flat refuse to give up tho...because I am too determined to continue to be a wife, grand-mother, mother, and try to continue being a source of help for elderly folks and so many others... worse off than me.

I think talking on the phone or on face time would be a great way to get to now each other and to commiserate with one another as we pick each others' brain -who knows-if we put our heads together-given how long we each have been living with this dx. we may end up with a new vision toward what we both have come to know at times as a exhausting challenge. We could write a book!

Trying to find my way clear through this dx. I have lived with since 1968 has taken me thru a maze of supplements; meds; docs; more docs; therapists; exercises, cold laser therapy which honestly helped me the most of anything in the way of treatments... but my ins.refused to cover that of course. Then there was one toooooo many of those painful " FMS massages" from the hands of too many "far from gentle masseuse's" who were totally unaware of how bad some tender points feel in those of us with FMS when we're subjected to massages. Most all of them made my tender skin and muscles feel they were tenderizing a rump roast with a wooden mallet! I would hurt so bad the 3rd day after each massage...due to the release of enzymes which caused me excruciating pain ... that I began wondering why on earth was I paying for such negative outcomes. Stopped that then!

Anyway, I want to pick your brain and know more about you. That said, I would LOVE to chat with you. Thank you very much for such a warm reply.

Regards,

Linda

Posted By : ak angel - 10/1/2013 1:14 AM
Welcome Linda! Glad you found the forum. Your wisdom and knowledge on fibro can be so beneficial to the forum. I have had fibro for about 20 years. I really new nothing about it too much except I was miserable. I happen to land on this forum and here is where my life was changed. I have finally learned how to manage my fibro . I am like you, I always hurt, but at least the pain level is a 4-5.

I have found out through years of trial, keeping the treatment simple is the best. I hope we see you around the forum. I really enjoyed the history you gave in your post about fibro.

Posted By : Sherrine - 10/1/2013 1:55 PM
Linda, you can't go to just any massage therapist.  You need a gentle massage and so many give deep massages.  That sounds like what you experienced.  I have seen a massage therapist once a month for years.  She has so much experience with fibromyalgia clients and is wonderful.  Unfortunately, she retired last week.  She fell, hurt her back several years ago and the massaging has made her back work so I'm back to square one.
 
This is what I did.  I went to the American Massage Therapy Association site and looked for massage therapists in my area with the experience I want.  I definitely want one that is certified in neuromuscular massage and if they are certified in myofascial pain and trigger point therapy, that's great!  I did find a young gal and will give her a try when I need to go again.  Below is a link to the American Massage Therapy Association site.  The therapists, in order to be a member, have to continue to take courses every year.  This makes them more knowledgeable in giving massages and they usually are the best ones out there.  My therapist that helped me for years could do just about any massage.  Last year she did her course on massaging cancer patients.  Yes, there is a specific way to massage people with various illnesses...including fibro.  Anyway, see if this helps you.
 
 
Another thing you can do to help yourself is trigger point therapy.  We have trigger points all over our bodies and much of our pain is referred pain.  I fixed my frozen shoulder using this technique.  I have a book called The Trigger Point Therapy Workbook and it can be found on Amazon.  It explains this technique and also has diagrams as to where to find the trigger points for the pain you are experiencing. 
 
One night I was awakened with tremendous side pain and I couldn't get comfortable no matter what I did.  I got up, got the book, looked up side pain, and saw that the trigger points for that ran along the side of my spinal column midway up my back!  I got a tennis ball and used that against the wall and found the trigger points.  I pressed into them as hard as I could stand and then moved my body to simulate massage and repeated this until the trigger points hardly hurt....about ten minutes.  I was able to go back to bed and when I awakened the next morning I had absolutely no side pain!  Yes, this really works. 
 
Sherrine
 
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : Acheybody - 10/1/2013 4:14 PM
Hi, Linda.

Boy, that was some accident!

I've had Fibro a long time, too, but not compared to you and Sherrine. I was diagnosed about 20 years ago. But I was being increasingly affected by it for years before that...in fact, I've had certain aspects as long as I can remember - like the brain fog. Oh, the brain fog.)

Anyway, I'm glad you've joined the gang. It's so great to be among people who get it!

Debbie
Moderator, Fibromyalgia Forum

Fibromyalgia, herniated disc L4-5, (recent discectomy), DDD, frozen shoulder(s?) Hashimoto's thyroiditis, IBS, migraines, visual disturbances, tachycardia, hearing loss (probably Menieres,) balance issues, chemical sensitivities.

Posted By : Mom of Hlads - 8/8/2017 10:12 AM
This is my first time to participate in a chat about my fibromyalgia diagnosis. I am 53 years old and I have suffered with fibromyalgia for most of my life. After a difficult bout with mono at age 32 (1995), that virus attacked my heart and I was diagnosed with cardiomyopathy. Fortunately, I recovered from the cardiomyopathy, yet fibromyalgia raised its ugly head afterwards and ever since. Howver, many years prior at age 15 (1979), I fractured my skull 5 1/2 inches. The recovery was slow. Even though I did not recieve my Fib dignosis until 1996, I can look back at my struggles and see that from that point on, I have never fully recovered. My family would say that I am not the same person as before the skull fracture. All that to say, I have [most likely had fibromyalgia since age 15. I have been diagnosed by many doctors with fibromyalgia but never had any true help. It is a diagnosis that has left me stranded, like a defective stamp on my forehead, to be tossed out. I understand that not many doctors know how to help, but I have had too many doctors treat me as if I my biggest issue is psychological.

The last time I went to my family doctor, I hadn't been in 5 years. I told him my wrist was hurting. I really did not relate it to fibromyalgia, it felt like a sprain that would not get better for a very long time. He looked at me impatiently and said, "Well, you have fibromyalgia, what do you expect?!" He wrote me a prescription for Darvocet and sent me on my way. I felt like he viewed me as nothing more than a hypochondriac looking for another prescription.

Last year I went to my OBGYN for an annual. We talked about my hot flashes and she prescribed Effexor. She said it is also prescribed for depression. I have found that it is actually helping me with the hot flashes and on an emotional level. For years, I have struggled with getting too overly emotional about things. I noticed that since taking the Effexor, I seem to be much more relaxed. I am a teacher and work in a very, very stressful environment so this has been extremely helpful. So, I am currently taking the Effexor for peace of mind, but it does not help with pain in any way.

It has been about 10 years since my visit about my wrist pain. That MD truly scared me away. I recently decided that it was time to approach my new MD about the fibromyalgia. I told her how the Effexor was helping emotionally but not physically. She has prescribed Cymbalta, but I don't think it is helping at all. In fact, it seems to be causing the hot flashes to return even though I continue to take the Effexor. I plan on weaning myself off of the Cymbalta.

All that to say,I have questions about the Tumeric Curcumin. I am embarassed to say that I have recently added that to the mix of my regimen. I immediately noticed that when I take the Turmeric at bedtime, I sleep much better. I am sure that I should not be managing this on my own, but I am truly scared and embarassed to talk to my MD. My past experiences have made me extremely hesitant to open up about the pain. When I talk about the pain, I become emotional and then I seem to lose credibility with the doctor. My husband of 30 years gets it. He supports me 1000% but he doesn't know how to help me either.

I go to the chiropractor twice a month, massage once a month. Don't know what else to do. Sorry for TMI, but I haven't ever had anyone else to talk to about this that understands, I'm not looking for drugs, I'm not making this up, I'm not a hypochondriac. I would appreciate any advice, y'all can give me. It has been a long journey alone.

Brenda

Posted By : Sherrine - 8/8/2017 3:08 PM
Hi, Brenda, and pwelcome! Well, right off the bat I'm saying I'm glad you are weaning off Cymbalta. Both Cymbalta and Effexor raise serotonin and could possibly cause problems. You should try not to take two or more of serotonin-raising drugs or supplements because you can cause Serotonin Syndrome. There is a link about this in Fibro 101...the first thread on the forum. All of Fibro 101 is good so do read it.

Here is a little about Serotonin Syndrome from the Mayo Clinic..

"Serotonin syndrome. Rarely, serotonin syndrome can occur when you take antidepressants that can cause levels of serotonin to increase in your body. This most often occurs when two medications that raise serotonin are combined, such as other antidepressants, certain pain or headache medications, or St. John's wort. Signs and symptoms of serotonin syndrome include anxiety, agitation, sweating, confusion, tremors, restlessness, lack of coordination and rapid heart rate. Seek immediate medical attention if you have any of these symptoms."

Why are you embarrassed about adding a supplement to what you are taking? Turmeric is found in curry and has been used for pain for many years. I take quite a few supplements to help me with fibro. I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a muscle relaxer called Robaxin. I also get a monthly gentle massage and I pace myself when doing things. I walk daily too. This helps with pain and energy. I also take CoQ10 and krill oil which help with pain too. What helps one with fibro doesn't necessarily help another. It's a trial and error type thing. If I hear of something that helps, I always pass it by my doctor. My doctor, though, told me that magnesium malate would not help me so I asked if it would hurt me. He said it wouldn't hurt me but I was wasting my money. Well, I tried it anyway and it works great for me! By the way, I chose to try more over the counter things instead of Cymbalta, Savella, or Lyrica and was happy to get good results for me. But some do get help from the fibro medications. As I said, it's a trial and error type thing.

So, please read Fibro 101. There are links about some supplements and how they work in the body and all sorts of good info about fibro.

Also, find a doctor that is board certified. Many see a rheumatologist but, no matter what, find a doctor you are comfortable with. Remember...you are hiring them! You want someone who will work with you to help you live a full and enjoyable life in spite of this illness. I know I do.


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

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : Ljm2014 - 8/8/2017 8:56 PM
Hi,

Welcome to you guys..

I take turmeric, in the form of curamed..it certainly helps especially with stiffness
Except tonight cause i carpet cleaned today..and that machine kicks my butt..

Right now cause i stepped in a rabbit hole and went flying, i am getting a gentle physical therapy called strain and counterstrain..they gently stretch the fascia to release the kinks..

I recently read an article by a dr who has fibro, that one of the best helps for her was myofascial release therapy massage..so i am looking for someone trained in that close by for something ongoing after the therapy..knocked the heck out of my whole right side so when they checked me , they reccomended ten weeks of therapy, but hey i am making progress..

Brenda, i do love an acupressure mat..its very calming, lowers the pain level, helps me sleep better..

But you need a decent dr. To work with you to find what helps you with the pain..

Linda mentioned cold laser..i bought a home unit for this, not as strong as what a dr. Has in their offices but i can take an area of pain from a 7 to a 4 in about 4 minutes..

So anything that helps that way in invaluable to me

Lj

Posted By : Mom of Hlads - 8/10/2017 7:19 AM
Thank you for your responses. Any help I can get is so much appreciated. My reason for being embarassed about taking the Tumeric is because I clearly added too many new things at the same time to easily determine what is causing what. The first thing I noticed after taking the Tumeric was that it helped me sleep longer and deeper. I don't think it's the Cymbalta because I have been told it can keep you up. So I think the Tumeric has some great potential for me. After some research on this forum and other websites, I now know that Tumeric is probably causing my heartburn. Unfortunately when I lower the dosage and combine with a meal, I don't get the same benefits.
I will definitely spend some time reading through Fib 101.
Thanks for listening.

Brenda

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