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goldencurly 01-27-2012 09:42 PM

fibromyalgia?
 
Anyone here have fibromyalgia?

I was diagnosed several years ago and although I am relieved to know there is something wrong with me and not just me being insane (what normal person admits out loud that everything hurts every day???)

I get just fed up and frustrated with it. I would just love to wake up one day and feel rested and okay and not be in pain. Grrrr.

juanab 01-27-2012 09:47 PM

I have Rheumatoid Autoimmune Disease and Fibromyalgia. I understand how you feel. It does get to be frustrating at times.

goldencurly 01-27-2012 09:58 PM

Quote:

Originally Posted by juanab (Post 1870826)
I have Rheumatoid Autoimmune Disease and Fibromyalgia. I understand how you feel. It does get to be frustrating at times.

I am so sorry you have RAD and FM. But thank you for understanding.

Sometimes I feel like I'm all alone in my head with this! Especially when someone asks me, "Why don't you just take ________ ?" Insert latest FM prescription medication into that blank and say it in a condescending voice like I am too stupid to take care of myself.

I have tried Cymbalta with no relief whatsoever and it actually made my insomnia worse! I took Lyrica for over a year and the side effects were not worth the relief that deminished over time. It took a long, miserable 4 months to wean off of it and I will hopefully never get it in my system again.

I try to eat healthy and take supplements of B vitamins, magnesium, potassium, bromelain, fish oil, flax seed oil, some other anti-inflammatory thing I cannot recall the name of along with the regular daily vitamin/mineral and calcium. I feel like a walking science experiment some days.

juanab 01-27-2012 10:16 PM

Quote:

Originally Posted by goldencurly (Post 1870838)
Quote:

Originally Posted by juanab (Post 1870826)
I have Rheumatoid Autoimmune Disease and Fibromyalgia. I understand how you feel. It does get to be frustrating at times.

I am so sorry you have RAD and FM. But thank you for understanding.

Sometimes I feel like I'm all alone in my head with this! Especially when someone asks me, "Why don't you just take ________ ?" Insert latest FM prescription medication into that blank and say it in a condescending voice like I am too stupid to take care of myself.

I have tried Cymbalta with no relief whatsoever and it actually made my insomnia worse! I took Lyrica for over a year and the side effects were not worth the relief that deminished over time. It took a long, miserable 4 months to wean off of it and I will hopefully never get it in my system again.

I try to eat healthy and take supplements of B vitamins, magnesium, potassium, bromelain, fish oil, flax seed oil, some other anti-inflammatory thing I cannot recall the name of along with the regular daily vitamin/mineral and calcium. I feel like a walking science experiment some days.

I am sorry you are suffering from FM. I can relate to what you are saying about being told by others to take whatever medication is being touted as if it is a cure. I am thankful my family and friends have not done that. I take issue with those commercials. They make it seem that just have to pop a pill and you are good as new. If it were that easy, you and I wouldn't be talking about it right now. I have taken Savella, Cymbalta and Lyrica. Either they didn't work or they made me extremely sick. I can't take any anti-inflammatory medication due to kidney disease caused by an interaction with Celebrex and another med I had to take for the RAD.

Jess the Mess 01-28-2012 02:47 AM

My mom suffers from FM. It's hard because most people don't even recognize it as a disease. She keeps it under control (as best she can) by also treating her Candida. I'll ask her for her sources tomorrow.


My fat thumb will make mistakes.

goldencurly 01-28-2012 11:22 AM

Quote:

Originally Posted by juanab (Post 1870855)
They make it seem that just have to pop a pill and you are good as new. If it were that easy, you and I wouldn't be talking about it right now. I have taken Savella, Cymbalta and Lyrica. Either they didn't work or they made me extremely sick. I can't take any anti-inflammatory medication due to kidney disease caused by an interaction with Celebrex and another med I had to take for the RAD.

All the treatments for FM only treat the pain and they are not very successful with that. There's nothing for the insomnia, forgetfulness, spaciness, stiffness, swelling, speech and language difficulties, cold intolerance and never ending fatigue. Even when I do sleep, I don't wake up rested.

If and when I ever have a good day, it's so easy for me to over-do and then have rebound symptoms for day on end afterwards. That's my biggest challenge is figuring out my limits when I am doing well so the next week or so aren't absolutely miserable.

goldencurly 01-28-2012 11:23 AM

Quote:

Originally Posted by Jess the Mess (Post 1870923)
My mom suffers from FM. It's hard because most people don't even recognize it as a disease. She keeps it under control (as best she can) by also treating her Candida. I'll ask her for her sources tomorrow.


My fat thumb will make mistakes.

Any and all info is appreciated! Thank you!

spring1onu 01-28-2012 12:10 PM

Quote:

Originally Posted by goldencurly (Post 1871060)
insomnia, forgetfulness, spaciness, stiffness, swelling, speech and language difficulties, cold intolerance and never ending fatigue. Even when I do sleep, I don't wake up rested.

If and when I ever have a good day, it's so easy for me to over-do and then have rebound symptoms for day on end afterwards.

Well, I could have written that right there, but I always attributed feeling like this to my thyroid problem, even though my endocrinologist has adjusted my medication to death and I still feel the same. I know these symptoms could be a lot of things, but I put off going to the Dr. because since moving I hate the thought of searching for one and of going in and giving them my laundry list of how crappy I feel, I just envision them looking at me like I'm nuts. :lol:

Interesting thread.

goldencurly 01-28-2012 12:32 PM

Quote:

Originally Posted by spring1onu (Post 1871092)
Quote:

Originally Posted by goldencurly (Post 1871060)
insomnia, forgetfulness, spaciness, stiffness, swelling, speech and language difficulties, cold intolerance and never ending fatigue. Even when I do sleep, I don't wake up rested.

If and when I ever have a good day, it's so easy for me to over-do and then have rebound symptoms for day on end afterwards.

Well, I could have written that right there, but I always attributed feeling like this to my thyroid problem, even though my endocrinologist has adjusted my medication to death and I still feel the same. I know these symptoms could be a lot of things, but I put off going to the Dr. because since moving I hate the thought of searching for one and of going in and giving them my laundry list of how crappy I feel, I just envision them looking at me like I'm nuts. :lol:

Interesting thread.

Everyone thought I was nuts except my husband. He met me back when I was healthy and he could see how I had changed over the years. My biggest fear was being told it was all in my head and I needed an anti-depressant. I've been depressed; I've been on anti-depressants. I knew this was different. Hugely different.

I went to the doctor several times and they always focused on the fatigue side of my complaints and I was given sleep aids, none of which worked for me. I was advised to eat right and exercise. I do eat pretty healthy. I do yoga everyday and walk 3-4 days a week.

I finally got a diagnosis because I fell over a 3 foot high retaining wall and landed on concrete. My elbow was the first thing that hit. It was a sharp intense pain at first but then in a few minutes it was just a horrible ache like the rest of me. So I just cleaned it up and actually went to dinner with my husband immediately afterwards. I just kept going with my daily routine for many days. A couple of weeks later I got pneumonia (unrelated to the fall) and was sent for a chest x-ray. I was standing there in the hospital gown and my doctor walked into the room and saw the dark bruise that covered my entire elbow and where it had spread down the back of my forearm. She insisted it be x-rayed as well. I had a "celery" break. The bone that runs from the pinky side of my hand up to my elbow was broken long-ways starting at the elbow joint and down about 3.5 inches from the elbow. She FREAKED OUT. How could I not know it was broken????? Because after the intial sharp pain was over, it didn't hurt any worse than the rest of me. That really got her attention and she became obsessed with figuring out what was wrong with me. A few weeks later I was given the diagnosis of fibromyalgia and an orthopaedic surgeon confirmed it. I also have arthritis in my spine but that is secondary to the FM issues.

lauraloo 01-28-2012 01:31 PM

I'm sorry to all those suffering with FM-- it's an unusual disease that is difficult to diagnose and often brushed off as not real by many health professionals.

I do not have FM but I have learned a little about it in my studies. There is good research showing that regular moderate-intensity exercise is a huge part of successfully managing FM. This includes aerobic conditioning and strengthening. I know this sounds like it may be totally out of the question for some of you, but it really is doable! Having someone to help manage the journey and of course going slow and being patient with yourself are imperative.

Here is the American Physical Therapy Association's statement on management of fibromyalgia.

Feel free to PM me with questions-- I'll do my best to help!

crimsonshedemon 01-28-2012 02:32 PM

I do. I was diagnosed with systemic lupus and fibro 15 yrs ago.
I have a ton of info if you're interested.

A great site with supplement suggestions is CFS & Fibromyalgia Solutions for Patients and Their Doctors Check out the SHINE protocol.

crimsonshedemon 01-28-2012 02:37 PM

Quote:

Originally Posted by goldencurly (Post 1871060)
All the treatments for FM only treat the pain and they are not very successful with that. There's nothing for the insomnia, forgetfulness, spaciness, stiffness, swelling, speech and language difficulties, cold intolerance and never ending fatigue. Even when I do sleep, I don't wake up rested.

If and when I ever have a good day, it's so easy for me to over-do and then have rebound symptoms for day on end afterwards. That's my biggest challenge is figuring out my limits when I am doing well so the next week or so aren't absolutely miserable.

A good doctor will treat the insomnia, the pain, the exhaustion. A lot of the brain fog comes from the sleep deprivation.
There is a sleep medication that helps fibromyalgia but most doctors won't prescribe it and its crazy expensive. It's the only medication that causes the body to actually sleep properly. OMG it's amazing! I used it for over a year then my insurance quit covering it.
A lot of the problems from fibro come from the sleep disorder. If you can treat the sleep problems, you'll feel a lot better. Have you ever had a sleep study done? If not and you have insurance, ask your doctor about it. It'll tell you exactly why you're not waking up refreshed. Mine showed that I get no stage 4 sleep, the deep restorative phase and cycle in and out of REM too often.

The cold issues could be related to your thyroid. Even if your bloodwork is normal, your thyroid can be underfunctioning but you have to have a doctor who's willing to try the the medication.

crimsonshedemon 01-28-2012 02:42 PM

Quote:

Originally Posted by lauraloo (Post 1871149)
I'm sorry to all those suffering with FM-- it's an unusual disease that is difficult to diagnose and often brushed off as not real by many health professionals.

I do not have FM but I have learned a little about it in my studies. There is good research showing that regular moderate-intensity exercise is a huge part of successfully managing FM. This includes aerobic conditioning and strengthening. I know this sounds like it may be totally out of the question for some of you, but it really is doable! Having someone to help manage the journey and of course going slow and being patient with yourself are imperative.

Tai Ch has been shown to be helpful too..
MMS: Error
Tai Chi Eases Symptoms of Fibromyalgia, Study Finds - NYTimes.com

Hopechild 06-26-2012 04:51 AM

good hair care products for fibro?
 
Luckily, I've been diagnosed with the disease at an earlier time in my life so I can start treatment. I am also luckily under the care of the leader in curing fibromyalgia, Dr. St. Amand, who has been treating me with pure guaifenesin. If you guys can get your hands on that stuff through a prescription somehow, it may help. I am on the long (and at this point, rather unknown) process of curing it, but in order for the guai to even work, I can't use any hair or skin products with salicylates in them. (This includes any plant oils or extracts *except for wheat, soy, and oatmeal*, and anything that ends with an -ate, i believe...)

I was therefore wondering if anyone knew about any curly hair products high in protein without any plant oils or salicylates.

SunshineGrrl 06-26-2012 08:42 PM

I've got it, was diagnosed 9 years ago. I can't take anything for it but muscle relaxers and/or sleeping pills, which don't really work, so I don't really take them. The pills specifically for fibromyalgia actually did work pretty well for me (Savella, Lyrica), but then my kidneys went kaput and those were the first drugs to go...along with the metformin for my PCOS. My body is one hot mess.

Ironically, the first thing that helped me drastically reduce the pain was eliminating caffeine from my diet. It can make you hypersensitive to even more pain. I didn't realize.

I cut out caffeine, carbonation and artificial sweeteners (not just diet sodas, but stuff like Crystal Light and that stuff). It wasn't for the fibromyalgia, but rather a decree because I had an episode of complete kidney failure for about 2 weeks. Now, they're only working at about 50%. All of the above are really, really hard on kidneys, I'm told. Now and again, I'll drink Sprite/Ginger Ale to deal with nausea, but otherwise, it's water with flavored stevia because I hate the taste of regular water. And I drink at least 64 oz of water a day. The volume of water is for my kidneys, but the constant flush of toxins from my body helps with the pain management of the fibromyalgia.

Those things were the biggest help in pain management. Yoga was also a huge help. My doctor also suggested a white noise element in my room to help remove anything that might disturb my sleep cycle, so I have a box fax always running on low in my room to drown out house noises and be able to sleep more continuously and more deeply.

Massages are a huge help if you can afford them. They were a huge pain reliever. Just make sure you drink tons and tons of water afterward or you'll feel like you got hit by a truck. It helps release the toxins in your muscles that tend to be released when they go into the repair mode during the 4th stage of sleep that most people with fibromyalgia don't reach. That's what my doctor says causes a lot of the pain is that the we don't reach the restorative level of sleep where muscles repair themselves and they retain those toxins. At least...part of it.

I know some people with RA are able to eat 1/4 cup of dries Montmorency Cherries and it helps with the inflammation and pain. I tried it and it did help me quite a bit with the pain. I can't stick with it. I'm hopeless.

People have also told me alkalized water helps them. I was told about it by a girl who had RA, but the fibromyalgia specialist doc here says it's pretty cool. Our bodies are acidic by nature, so if you alkalize it, it can change the toxin levels in the body. You can buy an alkalizer machine, but they're WAYYYY expensive. There are places around me that you can just go and purchase the alkalized water for a fee with reusable containers. It doesn't last very long, though, so you have to go often.

sew and sew 06-27-2012 03:38 AM

Quote:

Originally Posted by goldencurly (Post 1871060)
Quote:

Originally Posted by juanab (Post 1870855)
They make it seem that just have to pop a pill and you are good as new. If it were that easy, you and I wouldn't be talking about it right now. I have taken Savella, Cymbalta and Lyrica. Either they didn't work or they made me extremely sick. I can't take any anti-inflammatory medication due to kidney disease caused by an interaction with Celebrex and another med I had to take for the RAD.

All the treatments for FM only treat the pain and they are not very successful with that. There's nothing for the insomnia, forgetfulness, spaciness, stiffness, swelling, speech and language difficulties, cold intolerance and never ending fatigue. Even when I do sleep, I don't wake up rested.

If and when I ever have a good day, it's so easy for me to over-do and then have rebound symptoms for day on end afterwards. That's my biggest challenge is figuring out my limits when I am doing well so the next week or so aren't absolutely miserable.


Aww, man...I know exactly what you're talking about. I've never actually read all that summed up like that while reading on FM, but it all (crappily) resonates.

I noticed that you take Magnesium. As I understand it, there's a few select forms (nutrient combinations) of it that the body actually manages to absorb well enough for useful supplementation.

About 5 or 6 months ago, I started taking Magnesium Malate after reading the reviews on Amazon here, and I do think it's actually helped reduce the amount and severity of my flare-ups. Mine are really dependent on my hormonal cycle. I have a few flare-ups a month, and the worse happens right before, during, and after menstruation. It's still very uncomfortable during that actual window of menstruation, but it's not quite as oppressive. It's worth it. Then the instances of flare-ups not around the time of menstruating have seemed to just lessen, and when they do happen, they're over faster.

Malate comes from malic acid, of which green apples are a huge source. It's what lends the tartness. One of the things that piqued my interest about Magnesium Malate for FM is that often times green apples would definitely hit the spot for me, in a hearty way, not a "my taste buds want it" alone thing, although that too.

crimsonshedemon 06-27-2012 03:48 AM

Quote:

Originally Posted by sew and sew (Post 1982800)

I noticed that you take Magnesium. As I understand it, there's a few select forms (nutrient combinations) of it that the body actually manages to absorb well enough for useful supplementation.
.

Magnesium and malic acid are critical for fibro. You want to use a chelated form not the cheap form oxide or citrate. I use glycinate. Malate is an excellent form that combines with malic acid so you get both. Malic acid is also critical in atp production (energy). Magnesium helps in over 300 processes in the body yet we're deficient so our body just struggles.
The Role of Magnesium in Fibromyalgia.

I use D-Ribose for energy and couldn't get thru the day without it. It's so helpful. I use a few other things Dr Teitelbaum recommends and have had great results. I feel better now than I have in years and I've quit a couple prescription drugs in the process.

VTmom 06-27-2012 07:53 AM

This thread is unbelievably interesting to me. I have thought for several years that I may have fibromyalgia. I'm always stiff and achy, have chronic insomnia, am forgetful, and always cold. I had my thyroid tested a couple of years ago (bloodwork was normal) and have tried several different Rx's for insomnia (nothing worked). I started running/exercising about a year ago, hoping that would help with my overall health and fitness. It has been wonderful on many levels, but I've been perplexed as to why it hasn't helped with my insomnia and achiness. How does one get tested for FM?

Thanks to all for the great info here...it's really interesting.

ETA: oh, another interesting little tidbit - I JUST gave up caffeine a few days ago to see if that would help with my insomnia, even though I only drank 2 cups in the a.m. I thought it was worth a shot. Now I'm anxious to see if it helps with the stiffness, too.

crimsonshedemon 06-27-2012 04:33 PM

Quote:

Originally Posted by VTmom (Post 1982870)
This thread is unbelievably interesting to me. I have thought for several years that I may have fibromyalgia. I'm always stiff and achy, have chronic insomnia, am forgetful, and always cold. I had my thyroid tested a couple of years ago (bloodwork was normal) and have tried several different Rx's for insomnia (nothing worked). I started running/exercising about a year ago, hoping that would help with my overall health and fitness. It has been wonderful on many levels, but I've been perplexed as to why it hasn't helped with my insomnia and achiness. How does one get tested for FM?

Thanks to all for the great info here...it's really interesting.

ETA: oh, another interesting little tidbit - I JUST gave up caffeine a few days ago to see if that would help with my insomnia, even though I only drank 2 cups in the a.m. I thought it was worth a shot. Now I'm anxious to see if it helps with the stiffness, too.

You can be hypothyroid and your blood tests be normal. It's very common.

SmilingElephant 02-03-2013 04:49 PM

Quote:

Originally Posted by goldencurly (Post 1871060)
Quote:

Originally Posted by juanab (Post 1870855)
They make it seem that just have to pop a pill and you are good as new. If it were that easy, you and I wouldn't be talking about it right now. I have taken Savella, Cymbalta and Lyrica. Either they didn't work or they made me extremely sick. I can't take any anti-inflammatory medication due to kidney disease caused by an interaction with Celebrex and another med I had to take for the RAD.

All the treatments for FM only treat the pain and they are not very successful with that. There's nothing for the insomnia, forgetfulness, spaciness, stiffness, swelling, speech and language difficulties, cold intolerance and never ending fatigue. Even when I do sleep, I don't wake up rested.

If and when I ever have a good day, it's so easy for me to over-do and then have rebound symptoms for day on end afterwards. That's my biggest challenge is figuring out my limits when I am doing well so the next week or so aren't absolutely miserable.

This post makes me want to cry. I have been to two doctors that have told me i am too young for FM. But i know i have it. I hurt every single day. When it rains, i get a sensation of lightning or electricity flowing through my arms and legs. When its cold, my whole body just THROBS. I try not to complain, but it makes me so angry bc its an illness ppl outside dont really see and they think ill just snap back to my old self and be live and spontaneous all the time. I have been crying about this today. I am always tired. I often feel like im in another dimension, my speech is like a puzzle, ppl don't understand what im saying sometimes, sometimes i completely forget what im talking about, i can't find words. I've been dealing with this for about 2 or 3 years now.

I am also Bipolar and sometimes im confused which one is acting up unless im really hurting. Im hurting right now. I've been in bed all day today. Its to a point i dont want to go anywhere or do anything and im gaining weight. Idk what to do.

I won't lie, sometimes i turn to alcohol when i just can't take the pain anymore. I usually just drink a glass of wine just to sleep. It hurts worse when i lay down after working all day.

Im just so frustrated by it all. Nobody around me really takes me seriously. But it really does hurt.



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