Does anyone on here suffer from Fibromyalgia?

[SharonL]

My daughter has fought this for at least 10 years - different doctors running different tests. She finally found one a few months ago that ran the right tests and found several different things. But her pain is daily also, fatigue, osteoarthritis and the same symptoms you all are discribing. They found her blood count was down, thus the fatigue - taking iron pills to help that We found a lotion that helped the pain - now don't laugh - it's called '2 Old Goats' it's found in different stores, even some hardware stores. Just rub it on the pain and it helps.

She is a nurse and by the end of the day suffers fatigue until she just sits down and crys.

 

[Colleen1]

My daughter has fought this for at least 10 years - different doctors running different tests. She finally found one a few months ago that ran the right tests and found several different things. But her pain is daily also, fatigue, osteoarthritis and the same symptoms you all are discribing. They found her blood count was down, thus the fatigue - taking iron pills to help that We found a lotion that helped the pain - now don't laugh - it's called '2 Old Goats' it's found in different stores, even some hardware stores. Just rub it on the pain and it helps.

She is a nurse and by the end of the day suffers fatigue until she just sits down and crys.

Yes, it's not easy. It's great to get answers and find things that help. It sounds like she is able to get up and out and that's good. It is a struggle to stay motivated and get anything done. Some times the little things make all the difference...that and some good understanding people.

 

[Padre_Eddie]

I can understand pain very much. Prior to becoming a priest I was a trauma room R.N., and by the time my 12 hour shift was over I was in so much pain. It took everything I had from screaming when my then two year old daughter would want to hug me when I got home.

I will keep the both of you in my prayers.

 

[mmksparbud]

The weather here (Vegas) has taken a turn, it is definately winter setting in. I feel like somebody beat me up with a caste iron skillet. So I do feel for ya'all! I do urge all to check into Low dose Naltrexone (or is it Neltrexone?)
I know I've mentioned it before. (LDN) Has to be dr prescribed,and has to come from a compounding pharmacy, insurance does not cover it. It's also hard to get a dr to even investigate it, but it's been used by many and has helped many without the sideaffects of other meds. Just google it--no end of info on it. On the Patients Like Me forum, many people have a running journal on it, it's been researched more and more and The Fibromyalgia Network has had articles on it. It has kept many working, allowed others to eliminate or at least cut way back on heavier meds (can take opiates 10-12 hrs apart, or they cancel each other out.
Only reason I came off it is because it doesn't help with my foot nueropathy pain, so I need my trammadol to help me cope with that, otherwise I'd still be on it.
Some people have hunted down their local compounding pharmacy and asked them if there are any dr's prescribing it, and that's how they find out who is prescribing it and go to them.
It seems like this gets worse every winter--but those summer storms wreck havoc with us,too. Can't win. After 22 years of fighting this beast you'd think I'd have gotten used to it--not!! Keep trucking--you can pm me if you need a shoulder or some info. God bless.

 

[Jan Lyn]

Isn't it difficult to watch those we love suffer..? I do have Fibro and now my 13 year old has been diagnosed as well. They tend to call it Amplified Pain Syndrome in children. Staying active as she is must be very hard. Possibly it is good in some ways if she says so to keep moving. Not an easy thing. God bless you for being a precious mother that obviously cares so much!

 

[Home]

Isn't it difficult to watch those we love suffer..? I do have Fibro and now my 13 year old has been diagnosed as well. They tend to call it Amplified Pain Syndrome in children. Staying active as she is must be very hard. Possibly it is good in some ways if she says so to keep moving. Not an easy thing. God bless you for being a precious mother that obviously cares so much!

how could i say that?

 

[Jan Lyn]

Home, I said that in response #105. I'm sorry, but I am unsure what you are referring to. Would you like to tell me more?

 

[hopeinGod]

I am a 60 year old male who has been dealing with fibromyalgia, IBS-C, arthritis, stenosis, and other things for quite some time. The meds I take consist of tramadol, xanax, lyrica and an occasional vicodin.

Because pain meds cause constipation -- and I have leaned in that direction most of my life -- I must take a laxative and fiber supplements to assist me. I found senna helped me for about a year, but it fooled me into thinking I could return to eating more carbs like pastas, breads and other wheat containing foods. Today, I'm paying for it.

Lots of gas, bloating, belching, pain make up my days. And so, I've chosen to fast from wheat products entirely, again, which will cause me weight loss. My rush to re-enter normal life with the addition of senna allowed me to put on much needed weight which friends tell me looks good on me. From the low 140s, I went to 170 lbs. (with my pockets full). From a 32" waist, I went to a tight 34" and my skinny legs added enough weight to no longer make me self-conscious when I wear shorts.

All of my newfound liberty will pass, however, once I return to a restricted diet. And just how does the Lord fit in all this? Well, I guess He's heard enough from me about my situation to know how I feel and what I would like.

And to think I've scheduled a four day cruise next month with friends. With all that food onboard, I hope I don't further destroy myself. Please pray that I have the sense to keep away from the wrong foods.

Here's wishing all of you the best that is possible in this life. Oh, by the way, I'm scheduled also for a test to determine how slow I digest foods. Some radiated crackers I'm to swallow and for four hours they will be followed by a tracking device.

God be with you,
Dave

 

[Jan Lyn]

HopeinGod, thanks for sharing. It seems that one diagnosis like Fibro, start many "friends" as I call them following along with them. Stomach problems seem to be common as I hear you share as well. I attempted going gluten free 7 years ago and gave up as my weight so drastically fell. I am faced with the need to try that once again. I began last month to go gluten free and reduce sugar intake greatly. So far, eating frequently has helped me maintain weight. Whole foods really become quite tastey when you get used to them and realize how good they can be.

You pose an interesting question about how the Lord fits in all this. I think many of us with chronic illness ask that from time to time. Year ago, I felt he was more silent as I struggled with new diagnosis, but I can say that He was with me all the time. Now in more serious battles I am facing, I sense His abiding comfort and invitation to go deeper with him in things spiritual. I think it is down to the individual to determine what God is often trying to do in our lives. I find the experiences to be a teacher in a sort of way, though I do not believe He intends for me to suffer. I do know that I don't want these illnesses, yet I am a different person than I would have been today without them. Hugs for a very difficult thing to ponder.

I wish you well with your medical test and for the vacation-that you might enjoy it!
Peace,
Jan Lyn

 

[hopeinGod]

Thank you, Jan, for your reply. You certainly understand my plight, as it seems as much yours as mine. Even as I sit here, my digestive system is talking to me. I just drank a glass of fiber to add to a turkey burger with a little cheese and a few fries. My drink with the meal was almond milk.

I drink loads of water through the day. For me, "loads" means four bottles, as I've not been one to stick long with the recommended six to eight. How others do is beyond me. I doubt I would ever get out of the bathroom.

I'm off work this week, and today I decided to finally build from lumber the risers for the head of my bed. Years ago, I put old clothes and pillows between the mattresses. That didn't work very well, so finally, my bed is 5.5" higher at the head at an even slant. Only time will tell it's value.

Having been saved in 1972 while the Jesus Movement was happening, I was swept into home meetings and nondenom churches for eight intense years. At one of those stops, I sat under daily teachings, morning and evening, six days a week, for nearly two years. It was from those classes that I learned how to study, as well as what is contained in a foundation in Christ. The knowledge part I earned through diligence, but not every bit one learns is applicable. That's why it takes a personal relationship with the Lord to supply strength, comfort and healing.

These days, I try to live what is livable, while I give space for others, even when I'm not particularly feeling my best. I've been working the same job, in the same location, for twenty five years, and, if I want, I can retire in less than two years, although more thought has to go into making that decision. Certainly, it would make living with health issues less interruptive.

Off and on, for seventeen years, I was a crisis counselor on a part time basis for a Christian telephone ministry. I was taught how to active listen and to lead others via their feelings to decide for a remedy. Sometimes I too need a listener. Thanks for being here, Jan.

Dave

 

[Jan Lyn]

Ah, I see you are in Florida. I have a dear cousin there that keeps suggesting us to move near her there as the humidity would help my sjogrens as well. Yes, we do seem to be on a bit of a similar path with the Fibro and stomach issues.

How interesting a testimony and also what a difficult, but oh so necessary a job as a phone crisis counselor. My salvation story is a simple one of trust as a young child and grew along with me through the years. My parents "dedicated" me and my siblings to the Lord at a church at birth, but never had us baptised, as that was not really the way of this church. One could be baptised when older. I feel any way one is led is fine, yet the Lord really put me in a wonderful college environment where I truly found deep friendships with those who were mature in the Lord. So, I gained much more understanding at that time and choose to become baptised myself back in the early 80's in jeans and a tee-shirt. Smile........ It truly meant so very much to me as a young adult.
I worked many jobs as a pre-K teacher and then a career as a speech&language therapist before I had to come home. The years between working and becoming this disabled so that I cannot work outside the home, were too many to be eligible for any disability payment, though most sjogren's and IC people get it. I just trust that God will take care of us all and my husband will probably never get to retire. If you can do it with health issues it may be helpful it sounds. I'm sure that being at home will lead to a new and meaningful life in many other ways also.
I will pray that raising the top of your bed will help some of those digestive issues. Our bed is so funny here. It is also raised up, I have a triangle pillow AND two big pillows so that I am really sleeping almost straight up. Take heart, most people have much better results than I have!
I don't get here that often, but when I do I am reminded how much I like this place.

In Friendship,
Jan Lyn

 

[mmksparbud]

Many with fibro are saying going gluten free helped them. I probably should too, and have tried it--then I go berserk and eat nothing but carbs--I think it's called withdrawls!!---I am a carb addict! And I have the weight to prove it! When I was carb free, I saw no change in my fibro, or anything else. But if that works for you, it's better then sitting on the toilet all day!--Have you tried magnisium?? A lot of fibro people have shown low magnisium levels--I take it--take too much and you end up with diarrhea. We also have a tendency to have low levels of D-3. That helped my back pain when I got on it. If you get enough sunlight, you may not have a problem with that.

 

[hopeinGod]

Thanks for replying, Jan and mmk. Jan, your life has certainly taken a new direction. You sound adjusted to it, despite occasional contingencies.

I too attended church as a boy; actually, my Dad dropped us off at a Lutheran church. At the end of the service, we took a bus that dropped us off in our neighborhood next to a Methodist church that we also attended. So, the Lord was implanted into my thinking, but not quite committed to until I was 19. Being hearing challenged, I know the speech therapists at the VA as their offices are within the audiology department. I pray the Lord opens the door for disability compensation for you. My brother's wife has fibromyalgia, dengenerative bone disease and is bi-polar. It took her two years to secure a $900 monthly SSD check which pays for their mortgage.

If you do move to Florida, know that the summers are awfully hot and humid. Most older folks live indoors for six months out of the year with their ACs set at 76 or less. Also, keep in mind, the dermatologists here are working overtime due to the large number of skin cancer patients, so don't forget to put on the sunblock. I keep a bottle of SPF 50 in my car at all times.

MMK, there is a fibromyalgia treatment group called the Guaifenesin Protocol whose recommendation is total avoidance of carbs, as well as anything that contains salisylates, while they daily take enormous amounts of guaifenesin, a sinus remedy, that flushes their bodies of an unwanted element, phosphate. There are those who swear by it, despite the FDA's refusal to approve guaifenesin for the treatment of fibromyalgia. The protocol has not been shown to be effective in clinical trials as of 2008. A clinical study in 1996 cast doubts on it's effectiveness.

So, there is a great deal of talk about carbohydrate influence. I know how they effect me, and when I fail to maintain the right regimen, I pay for it, especially in regard to pastas and breads.

I used to drink Natural Calm, a powdered magnesium, 615 mg. per teaspoon, but I got away from that too. There's still some in the refrigerator. I should get back on it.

Dave

 

[Jan Lyn]

I hear you, mmk. It is so difficult to give up gluten. The hardest part I find is that I cannot eat rice, which is crazy as it is know as one of the most hypoallergenic foods. So, most gluten free foods are made with that. I know my one cheat over the Christmas holiday will be crust free cheese cake. Smile.....loads of sugar in that baby!
Wow, Dave, your parents made sure you double dipped on the church there. After becoming a parent myself, I truly believe that all parents do pretty much try their best. We went to one church, though I seem to recall many summers being enrolled in every vacation Bible school around our community! I think my mother wanted to keep me busy!
Your Florida humidity would be good for me as well as mild winters. The sun is not my friend, although I love it. I cannot go in it with the sjogrens. Fortunately for me, we live in a house with a living room that has one wall that is all windows. It's like God brought the outdoors in for me.
God bless you all as you discern how to best care for your physical ailments. It's a challenge, I'm sure.Good to know we are not alone and God is with us.

 

[kaminnl]

My mother in-law has really bad Fibromyalgia..So, bad it used to keep her bed ridden. She been taking this all natural stuff for a few months and now she's mobile again...hardly has any pain....She thanks God for this stuff. Me too, I used to hate seeing her in so much pain....That disease is BRUTAL.

 

[mmksparbud]

In the Fibromyalgia Network newsletter, there was an article that suggest it may not be the gluten that's the problem, but the arginine in it--I'm not sure I spelled that right. And I did the guaif stuff--gave it up, didn't see any difference. The one thing that has helped was the LDN (Low Dose Naproxen)--I think naproxen!--it helped my fibro, but did not help with my nueropathy pain in feet and I needed trammadol for that (the only thing that has helped a little with that) and you can't take opiates with LDN--unless they are 12 hours apart--I need it more often.
Right now, the weather has taken a sudden change and gotten colder and my fibro is acting up pretty bad--it's hard telling what hurts more, my back, my nueropathy pains, or my fibro pains!! With my feet, I get a combination of fibro and nueropathy pain!! What a deal, a 2 for one special!

 

[ChristianSambodhi]

I was recently diagnosed with both Fibro and Interstitial Cystitis. I knew I had something wrong with me for years, but doctors didn't take me seriously until recently. I was getting my PhD and had to stop due to the fact I was in pain and tired all of the time. Now that I have been resting and on Lyrica for a couple of months, I do feel a bit better. I am job hunting; but I do worry about working full-time. I also suffer with Bipolar II (mainly depression, but it does rapid cycle) and anxiety, both of which can be caused or made worse by the Fibro.

 

[mmksparbud]

I was recently diagnosed with both Fibro and Interstitial Cystitis. I knew I had something wrong with me for years, but doctors didn't take me seriously until recently. I was getting my PhD and had to stop due to the fact I was in pain and tired all of the time. Now that I have been resting and on Lyrica for a couple of months, I do feel a bit better. I am job hunting; but I do worry about working full-time. I also suffer with Bipolar II (mainly depression, but it does rapid cycle) and anxiety, both of which can be caused or made worse by the Fibro.

Sorry--but had you been male, you would have been taken seriously!! Glad Lyrica helped you, I couldn't take it as it made me retain water like a sponge. I couldn't get it off even with diuretics, I have to take Lasix as it is. I struggled with work for 17 years--everyday was "Lord, please get me through today."--Little by little I had to cut back until I was only working 3 12hr days a week (the minimum I could and still keep my medical benefits)And I worked only Mon--Wed--Fri, so I could rest up in between, and I still would have to call in. It was terrifying wondering how long I could keep going. Thank God I had both short term and long term disability from work for when the time came. But it still cost me all my savings and had to go through all my 401k--My hubby and I are both on disability. It's hard to keep your sense of humor, but I refuse to give that up, too!--Sometimes, that's what keeps you going, esp through the mental fog that sets in and you start doing stuff that you thought you wouln't be doing until you were 85--you know, milk in the cupboard and dry cereal in the [bless and do not curse][bless and do not curse][bless and do not curse][bless and do not curse] type of thing! You better laugh, or you'll be crying 24/7!
A lot of us have more than fibro to deal with--it can be daunting. Prayer and laughter do wonders--research, research research--most dr's haven't a clue, and what they do know can be totally outdated or just plain wrong. Sometimes we have to be our own dr's and drag them screaming behind us as they are the only ones that can prescribe!

 

[Ronald]

Hey everyone. I suffer from Fibromyalgia

.
Just some advice. Watch what you put in your mouth. If it doesn't grow don't eat it. Do an organic veggie/fruit juice cleanse for a few days and then stick with non-processed foods. If ingredients have sugar, refined flour, trans fats, MSG and/or a long list --stay away. Fresh food and fish with limited organic meat/chicken. What I've heard is that diet drinks and anything in a can where you can ingest aluminum can lead to problems. Just stay natural as much as possible and you can turn around any disease, including cancer.

 

[ChristianSambodhi]

Sorry--but had you been male, you would have been taken seriously!! Glad Lyrica helped you, I couldn't take it as it made me retain water like a sponge. I couldn't get it off even with diuretics, I have to take Lasix as it is. I struggled with work for 17 years--everyday was "Lord, please get me through today."--Little by little I had to cut back until I was only working 3 12hr days a week (the minimum I could and still keep my medical benefits)And I worked only Mon--Wed--Fri, so I could rest up in between, and I still would have to call in. It was terrifying wondering how long I could keep going. Thank God I had both short term and long term disability from work for when the time came. But it still cost me all my savings and had to go through all my 401k--My hubby and I are both on disability. It's hard to keep your sense of humor, but I refuse to give that up, too!--Sometimes, that's what keeps you going, esp through the mental fog that sets in and you start doing stuff that you thought you wouln't be doing until you were 85--you know, milk in the cupboard and dry cereal in the [bless and do not curse][bless and do not curse][bless and do not curse][bless and do not curse] type of thing! You better laugh, or you'll be crying 24/7!
A lot of us have more than fibro to deal with--it can be daunting. Prayer and laughter do wonders--research, research research--most dr's haven't a clue, and what they do know can be totally outdated or just plain wrong. Sometimes we have to be our own dr's and drag them screaming behind us as they are the only ones that can prescribe!

I agree with what you said about being male. I'm sorry you suffered for so long without help. (((hug)))

I get Firbo fog all the time! When I was teaching, my students would laugh when I lost my train of thought or misused words. I laughed too. I hate it so bad, though...

You seem to have a great frame of mind and you're right. We do need to take charge of our own health. Thank you so much for sharing with me! God bless you!