fibromyalgia?

Like Tree24Likes

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.
Originally Posted by juanab
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.
Originally Posted by goldencurly
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.



Sent from my LG-LG730 using CurlTalk App
Originally Posted by SmilingElephant

Please keep at your doctor or find a new one. It took me years to get diagnosed. The prescriptions for it don't work for me so I take supplements and try to exercise a little bit every day. If I am having a bad day, I just walk laps around in my house or yard. On a good day, I can do yoga for an hour. I don't mean fast or power yoga, just a calm slow routine. I take the following forms of magnesium:

oxide 250mg 1x day
malate 283mg 2x day
bis-glycinate 100mg 2x day

I also daily use magnesium oil made from boiled water and magnesium chloride flakes. It helps with the muscle pain and stiffness and spasms and cramps.

I know the oxide pill isn't the best form of magnesium but it helps prevent constipation which I also have from IBS. I also take fiber, soluable and non-soluable for that. I also take a pro-biotic daily

The best stuff ever for my energy level is D-Ribose. I take 1000 - 1500 mg per day and it prevents me from feeling so weak and exhausted.

I also take Deproloft for anxiety and depression and this really helps me sleep better and not feel so overwhelmed. It is available without a prescription and is a combination of several natural remedies for depression.

Don't give up. There isn't a cure so far, only treatments. If you go to the Mayo Clinic's website they have a lot of information and so do several different fibromyalgia support websites. Someone here recommended the SHINE protocol and I am trying to implement it.

And there are several of us here you can talk to. The curlies are very supportive and caring. (((HUGS)))
Thank you.

I am going to annotate those supplements and try them. Im sick of medication. I already take two for my brain.

I have been having lots of muscle spasms especially in my legs. But i went to the hospital a few weeks ago (i thought i was having seizures) and found out my potassium level is a little low so i have been eating lots of bananas.

Other than that, i just have no energy. And this is coming from someone who at one point held 3 part time jobs and was trying to go to school, catching the bus. I like to go do things but lately i feel helpless.

I feel so sad today and my legs are throbbing, ny feet feel stiff. I am trying to not cry.

But i will try the supplements.

Sent from my LG-LG730 using CurlTalk App
2yrs 7 months post relaxer/2 years and 11 months natural

Cleanse: SM Moisture Retention or Suave Naturals shampoos
Co-Wash: Suave Naturals, L'Oreal EverCreme or EverCurl
RO/Detangler: Tresseme Naturals, GVPCB
Leave-In: SM Curl Enhancing Smoothie, TN, GVPCB
Styler: EcoStyler, GF Pure Clean gel, KCCC

Just discovering my hair likes protein!

I never came back to this thread. Bad Jess. I'll update when my mom is back in town. I've seen her when it was at its worst and I so feel for you ladies. It can be so hard.
High Priestess JessMess, follower of the Goddess of the Coiling Way and Confiscator of Concoctions in the Order of the Curly Crusaders

Thank you.

I am going to annotate those supplements and try them. Im sick of medication. I already take two for my brain.

I have been having lots of muscle spasms especially in my legs. But i went to the hospital a few weeks ago (i thought i was having seizures) and found out my potassium level is a little low so i have been eating lots of bananas.

Other than that, i just have no energy. And this is coming from someone who at one point held 3 part time jobs and was trying to go to school, catching the bus. I like to go do things but lately i feel helpless.

I feel so sad today and my legs are throbbing, ny feet feel stiff. I am trying to not cry.

But i will try the supplements.

Sent from my LG-LG730 using CurlTalk App
Originally Posted by SmilingElephant
Please get the book From Fatigued to Fantastic by Jacob Teitelbaum MD
Go to his website Vitality 101

Magnesium- Muscle spasms are usually magnesium deficiency... as are many of the fibro symptoms.... but we don't hear that from allopathic doctors. Magnesium malate is one of the best forms for fibro. It contains magnesium and malic acid. Helps with energy and muscle pain... plus you get all the many benefits of magnesium. All magnesium helps with constipation so if that's a problem, the mag malate will help.
You need to take an adequate dose but start very slowly! It wasn't until I was at 600mg a day for a while did I notice any significant changes. You need to restore your magnesium deficiency and not until that's restored, will you notice improvements. There needs to be enough magnesium to go around in the body. Using the oral magnesium and magnesium oil are excellent ways to get magnesium into your body.

Ribose- Dr Teitelbaum recommends 5 grams (5000mg) three times a day for 1 month. Then cut back to 5 grams (5000mg) two times a day. I still take 5 grams 2-3 times a day. It's changed my life! The powder is the cheapest way to buy this. Puritan's Pride buy 2 get 3 free is the cheapest I've found.

Sleep- you must sleep! Be careful with most prescription sleep meds as they actually interfere with the stages of sleep. There are many herbs that are very helpful.

Thyroid and adrenals- both need treatment and support.
Lots of ways to treat these.

I have a facebook group that posts a ton of info https://www.facebook.com/groups/fibromyalgiafighters/ We would love to have you.

Vitacost.com is where I get most of my supplements.. they're the cheapest I've found and I shop thru extrabux and earn 8% back so I save a little more. I can give you a referral code and they'll send you a 10$ coupon.
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.
Originally Posted by goldencurly
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.

Interesting thread.
Originally Posted by spring1onu
So glad this was bumped back up! I eventually did find a family Dr. to start seeing and she did a whole slew of bloodwork on me which all came back stellar (yay!) so that was a relief. She said it's very rare she doesn't see at least one of the tests come back with something to at least keep an eye on, but all of my tests were normal levels. While that made me elated, it also left me with "Well crap, then what the heck is wrong with me??".

Would y'all mind sharing the brands of supplements you're using and where you get them? I know quality can vary greatly from brand to brand and the thought of trying to figure out exactly what to order makes my eyes cross. I'd like to take a quality magnesium and try the ribose.

I started taking magnesium about a year ago for really bad leg cramps I was getting and the change I saw was amazing, it really helped! It was just the cheap stuff, whatever was on sale at the drugstore or I could get at Costco so I'd be interested to see what magnesium malate could do for me. I'd love to find something that is one pill a day though because they tend to be big and I have issues with swallowing large pills. I can get the first one down, but if I have to do more than one it gets tough. I know it's all in my head and I'm trying overcome it, but still have problems with it.




Byron,GA> Charleston, SC> Jacksonville, FL> Guilford, CT> Rohnert Park, CA! A southern drawl in sunny Cali! .
The amount of time from slipping on the peel and landing on the pavement is exactly one bananosecond.
I do have a secret yen for pink in unexpected places. ~ninja dog
I've decided that I'll never get down to my original weight, and I'm OK with that--After all, 8 pounds 2 oz. is just not realistic.
I use the following : Amazon.com: Jarrow Formulas Ribose Muscle Edge Powder, 100g: Health & Personal Care

Amazon.com: SOURCE NATURALS Magnesium Bis-Glycinate 100mg 60 TAB: Health & Personal Care

Amazon.com: Source Naturals, Magnesium Malate 1250 mg 90 Tablets: Health & Personal Care

Amazon.com: Magnesium Chloride Flakes 2.2 lb (35.27 oz) Flakes by Swanson Ultra: Health & Personal Care

Amazon.com: THORNE RESEARCH - Deproloft-HF - 120 caps [Health and Beauty]: Health & Personal Care

The magnesium pills are larger than say extra strength Tylenol. Spring - you could try tricking them down in a spoon of applesauce or even use a pill cutter to halve them first.

The last item Deproloft-HF really has improved my quality of sleep. I started taking it for anxiety/depression. It helps me not feel so overwhelmed and makes me feel more relaxed and settled without making me feel like a zombie - which is what Cymbalta did. I will take it as long as I can afford it just for the improved sleep!!! And the good news - these are pretty small.

All the magnesium has helped my achiness and throbbing in my legs and back and I no longer have cramps in my feet in the middle of the night.

Spring - have you talked to your doctor about fibromyalgia? When mine was trying to figure out what was wrong with me, all my blood tests were perfectly normal. She did some kind of pressure point test to confirm it was FM. Just putting a name to it was a relief because I thought I was nuts to keep complaining about how bad I felt. I know I sounded crazy but it was true.

Smiling Elephant - (((HUGS))) Hang in there. If you are taking meds for fibromyalgia, wean off them slowly - coming off can be brutal and send you spiralling into worse pain. I took 4+ months to wean off Lyrica. I saw a chiropractor 1 - 2 times a week during that period. It was incredibly expensive to pay that co-pay but it really helped me deal with it. I wish I had known about magnesium and ribose back then!

FM just sucks.
GC, thank you so much for the links! The magnesium pills I'm taking now are pretty huge and I can get one down with minimal issue so if I could find one that only requires one a day that would be optimal if it's possible. If not I'll just have to suck it up and figure it out.

Sleep is where I have a huge problem which makes the whole day miserable. I believe if I could actually get some rest that alone would help me feel better. I had a horrible foot cramp a few nights ago and normally I can move my foot and work it out before it gets bad, but not this one. Oh boy, it sucked! Made my foot sore for several days and that hasn't happened in quite some time.

It's very frustrating to feel like this because I certainly don't want to and trying to pretend there is nothing wrong when you're absolutely exhausted can be hard. We can have a day out of not really doing much physically and at the end of the day I'm absolutely exhausted, but Mr. Spring will be just fine....this can't be normal! lol My body hurts and I'm always sore and when I do new exercises I know that soreness is normal, but holy mercy it's misery.

I haven't been back to the Dr. to delve into it further, but I plan on talking about it with her again. The thing is it seems like my complaints could be a myriad of things. When I read over the symptoms of people who have a gluten intolerance a lot of it resonates with me, but oh my goodness the thought of trying to go GF seems overwhelming to me. I think at some point I'll have to try it, but I'm not sure when.




Byron,GA> Charleston, SC> Jacksonville, FL> Guilford, CT> Rohnert Park, CA! A southern drawl in sunny Cali! .
The amount of time from slipping on the peel and landing on the pavement is exactly one bananosecond.
I do have a secret yen for pink in unexpected places. ~ninja dog
I've decided that I'll never get down to my original weight, and I'm OK with that--After all, 8 pounds 2 oz. is just not realistic.
So i haven't been able to get my hands on any supplements yet. Im on a trip with a friend right now and im hurting very bad...luckily we're getting pedicures right now and im in a massage chair.

Sent from my LG-LG730 using CurlTalk App
goldencurly likes this.
2yrs 7 months post relaxer/2 years and 11 months natural

Cleanse: SM Moisture Retention or Suave Naturals shampoos
Co-Wash: Suave Naturals, L'Oreal EverCreme or EverCurl
RO/Detangler: Tresseme Naturals, GVPCB
Leave-In: SM Curl Enhancing Smoothie, TN, GVPCB
Styler: EcoStyler, GF Pure Clean gel, KCCC

Just discovering my hair likes protein!

Mag needs to be taken twice a day.... it's how your body best absorbs it and you have to spread out larger doses. you cant take 1000mg at one time. i would only take 400mg at a time.
You can take capsules which are smaller but less mgs... Usually around 100mg. But mag is big unless you use the non-absorbable form like mag oxide which you dont want to use because it's useless. The malic acid in magnesium malate is very helpful for fibro. Supplement the oral mag with mag oil. A good mag oil is about 100mg per 8 sprays. A foot soak with 2 cups mag chloride flakes is around 15 g of mag.

For sleep, have you tried melatonin and herbs? Several rx'd sleep meds actually interfere with sleep so you have to be careful. I use the Sleep Tonight and Revitalizing Sleep Formula both by Enzymatic Therapy. I still add tons of other herbs because I have serious sleep problems but besides Xyrem, the herbs have worked better than ambien, lunesta, remeron, etc etc. not sleeping makes everything worse and just depletes your adrenals even more. Dr Sara Gottfried had a lot of info about cortisol and how it affects everything. I've read her blogs/articles and listened to several podcasts and absolutely live her.
Hang in there!
I'm not sure whether I have fibro or not, but I've been trying to find magnesium that is not magnesium oxide. I figure it can't hurt to try! Where have you found magnesium that is not the oxide kind?
Does anybody ever feel embarrassed bc of this illness. My self esteem is low bc i have both Bipolar and Fibromyalgia and i also have other issues. But i felt so embarrassed during my trip that i couldn't keep going. I felt like a 90 yr old woman, and then i had to take my meds in front of my friend for my Bipolar.

She was cool about it, but still...it just feels so unfair. Anybody else ever feel this way? Ive become more reserved bc of all of this. I used to be a social butterfly.

Sent from my LG-LG730 using CurlTalk App
2yrs 7 months post relaxer/2 years and 11 months natural

Cleanse: SM Moisture Retention or Suave Naturals shampoos
Co-Wash: Suave Naturals, L'Oreal EverCreme or EverCurl
RO/Detangler: Tresseme Naturals, GVPCB
Leave-In: SM Curl Enhancing Smoothie, TN, GVPCB
Styler: EcoStyler, GF Pure Clean gel, KCCC

Just discovering my hair likes protein!

I used to be a very social person. Because of Rheumatoid Autoimmune Disease, Fibro and other ailments, I am almost a recluse. I am not embarrassed, it is painful and exhausting to go out. Even going to dinner is hard. I have lost a lot of friends.

texture - medium/fine, porosity - low/normal, elasticity - normal
co-wash - NaturelleGrow Coconut Water or Marshmallow Root, Slippery Elm Bark & Blue Malva Cleansing Conditioners
LI - KCKT mixed w/ SM C & H Curl & Style Milk
DC - NG Mango & Coconut H2O or Chamomile/Brdck Root
Gel - SM souffle (winter), KCCC (summer) or CR Naturals Aloe Whipped Butter Gel (year round)
Sealers - Virgin Coconut Oil, Avocado butter, Aloe butter
Ayurvedic treatments - Jamila Henna, Sukesh, Aloe Vera Powder, Hibiscus Powder
.




Does anybody ever feel embarrassed bc of this illness. My self esteem is low bc i have both Bipolar and Fibromyalgia and i also have other issues. But i felt so embarrassed during my trip that i couldn't keep going. I felt like a 90 yr old woman, and then i had to take my meds in front of my friend for my Bipolar.

She was cool about it, but still...it just feels so unfair. Anybody else ever feel this way? Ive become more reserved bc of all of this. I used to be a social butterfly.

Sent from my LG-LG730 using CurlTalk App
Originally Posted by SmilingElephant
I complain a lot about my "aches and pains" and I get plenty of eye rolls and exasperated groans in response. Even from my mother...who is 71...
3b (with 3c tendencies) on modified CG

I don't even talk about it with anyone or mention it. Even if I had a name to put on whatever is wrong with me, most people don't understand and unfortunately look down on it like I'm this way for the sole reason of being lazy. That most certainly isn't the reason so I just try to pretend I'm fine and don't bring it up to anyone and push on through. Thankfully my husband completely understands and helps me maneuver around it in social situations without having to embarrass myself when I just can't press on and do what everyone else is doing.

Some days it really gets me down, but most of the time I try to keep my chin up and remind myself it could be a whole lot worse and I am still able bodied, albeit somewhat limited in stamina until I can figure this whole thing out.

Gosh, it's hard to even type about it here although I know y'all understand. The fear of being judged as a lazy ass is always with me.




Byron,GA> Charleston, SC> Jacksonville, FL> Guilford, CT> Rohnert Park, CA! A southern drawl in sunny Cali! .
The amount of time from slipping on the peel and landing on the pavement is exactly one bananosecond.
I do have a secret yen for pink in unexpected places. ~ninja dog
I've decided that I'll never get down to my original weight, and I'm OK with that--After all, 8 pounds 2 oz. is just not realistic.
But i had no choice but to talk about it bc i could not go on. I was hurting SO bad and she wanted to go out to the club and do other things and my body was just bringing me down.

I felt so bad bc she invited me to go and i tried hard not to rain on her parade but i felt like i was gonna die. I felt embarrassed bc im still pretty young in my late twenties and can barely do anything. It was just very annoying.

Sent from my LG-LG730 using CurlTalk App
2yrs 7 months post relaxer/2 years and 11 months natural

Cleanse: SM Moisture Retention or Suave Naturals shampoos
Co-Wash: Suave Naturals, L'Oreal EverCreme or EverCurl
RO/Detangler: Tresseme Naturals, GVPCB
Leave-In: SM Curl Enhancing Smoothie, TN, GVPCB
Styler: EcoStyler, GF Pure Clean gel, KCCC

Just discovering my hair likes protein!

The fear of being judged as a lazy ass is always with me.
Originally Posted by spring1onu
This is an underlying issue with me that never goes totally away. People just do not understand.

But i had no choice but to talk about it bc i could not go on. I was hurting SO bad and she wanted to go out to the club and do other things and my body was just bringing me down.

I felt so bad bc she invited me to go and i tried hard not to rain on her parade but i felt like i was gonna die. I felt embarrassed bc im still pretty young in my late twenties and can barely do anything. It was just very annoying.
Originally Posted by SmilingElephant
I get frustrated by feeling like my body won't do all I want it to do. So I have had to make lifestyle changes. I try to walk for 10-15 minutes a couple of times a day at least. I also do yoga and lift weights. No, I do not mean power or fast yoga nor do I lift weights to build muscle mass. Everything I do is to build up my strength and stamina. I broke my foot right before Christmas and I am back in hiking shoes with special inserts but I am not allowed to just go for a walk yet. I can walk indoors, but I find outdoor time is better for me, not just physically, but it helps lift my mood and make me feel better.

This is corny, but when I get really frustrated with myself I quote C. S. Lewis:

"You do not have a soul. You are a soul. You have a body."

What does that mean to me? I am NOT my body. I am who I am on the inside. And the body I have is only a tool. It is flawed and weak and fragile but I do the best I can with it and try not to get too down about it. Sometimes it's really hard not to get depressed. I take an herbal supplement for depression and anxiety (I have more issues with anxiety than depression) and it helps give me a better attitude, more energy, and less feeling of dispair. I try to focus on what I need to be thankful for and not take things for granted. I try not to worry about what others think of me.

(((HUGS)))
spring1onu likes this.
Hi SmilingElephant,
I completely understand how you feel. I have chronic pain and every day I wonder how I will feel and if I'll be able to make it through the day without severe pain. I've lost a lot of friends over the years who thought I was just blowing them off when I was flaring. I'm just writing to say I understand-I've been in the position numerous times when I just have to say that I can't, that I need to call it a night. That being said, I agree with goldencurly's advice-stay active, make sure to get enough rest, etc. The best thing we can do is keep our natural endorphins going!

Goldencurly,
Do you mind sharing the name of the supplement you take for anxiety? I'm on a very low dose of an Rx anti depressant, but it does nothing for the anxiety I experience and when I increase the dose, I turn into a zombie! Any tips are very much appreciated!

Thanks for starting this thread, SmilingElephant. It's nice to chat with others who are facing the same challenges, even if just virtually.
I'm not sure whether I have fibro or not, but I've been trying to find magnesium that is not magnesium oxide. I figure it can't hurt to try! Where have you found magnesium that is not the oxide kind?
Originally Posted by DCWavyLady
I order it from Vitacost. You wont find it at a drugstore.
I take Deproloft-HF. I buy it from Amazon. I also get my magnesium malate from Amazon as well as the magnesium chloride flakes that I use to make magnesium oil.
Thank you, both! I've been looking for magnesium everywhere! Not even the vitamin store or GNC sells a version not made from magnesium oxide!

Goldencurly, Before you tried the supplement, did you have panic attacks? If so, did it help? I suppose I'll have to talk to my doctor first since I'm already taking Prozac. I very much want to stop taking it though given that it doesn't seem to be helping anymore.

Trending Topics


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On



All times are GMT -6. The time now is 09:26 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.
Copyright 2011 NaturallyCurly.com