fibromyalgia?

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They do have it at my supermarket, too. But is ordering online better?
Originally Posted by spiderlashes5000
I shop mostly at vitacost. Earn money back thru extrabux.
I buy Ribose at Puritan's Pride during the buy 2 get 3 free and probiotics from Swansons.
Vitacost got all crazy on me once and swore I had signed up for a monthly delivery. No. No. No.

So they billed me and shipped a bottle of ribose that I didn't order. I emailed and complained and they refunded the cost of the ribose, but not the shipping. So I am not fond of them. Just be careful. But that can happen with any on-line store probably. I've never had a problem with Amazon, so I just stick with them.
murrrcat likes this.
I finally went to see a rhuematologist (the top one in my city) and she diagnosed me officially w/ fibro. So now I have a real explanation. She immediately put me on Neurontin (gabapentin), an anti-seizure med, and told me to increase the dosagage gradually over the next 8 weeks. I'm only at week two and the improvement, so far, is remarkable!

I was having so much pain and stiffness in my knees, I thought I had develped osteoarthritis and would need my knees replaced...soon. Turns out, it was the fibro, bc they don't hurt anymore.

I used to stumble out of bed and lumber to the bathroom, hunched over, unable to bend my knees or my foot joints. Now I get out of bed w/ ease and feel like i'm gliding along on air.

I still have a lot of stiffness in my neck and upper body...but maybe as I continue to increase the dosage, I will see an improvement there, too?

Has anyone tried Neurontin?
PerriP likes this.
3b (with 3c tendencies) on modified CG

I finally went to see a rhuematologist (the top one in my city) and she diagnosed me officially w/ fibro. So now I have a real explanation. She immediately put me on Neurontin (gabapentin), an anti-seizure med, and told me to increase the dosagage gradually over the next 8 weeks. I'm only at week two and the improvement, so far, is remarkable!

I was having so much pain and stiffness in my knees, I thought I had develped osteoarthritis and would need my knees replaced...soon. Turns out, it was the fibro, bc they don't hurt anymore.

I used to stumble out of bed and lumber to the bathroom, hunched over, unable to bend my knees or my foot joints. Now I get out of bed w/ ease and feel like i'm gliding along on air.
Originally Posted by spiderlashes5000
this is excellent news!
spiderlashes5000 likes this.
Modified CG since Dec 2011
Growing out super short cut

High porosity, fine, unknown curl type, somewhere in the 2s at the moment
Mostly low poo
Current rotation includes:
Wash: Yes To Carrots -Condition: Yes to Cucumber, Nature's Gate Jojoba, One C - Stylers: Deva volumizing foam, Deva UDG B'Leave In, Foxy Curls Hi-Def Curl spray
That is good news Spiderlashes! Are you affected by weather as I am?

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
.




That is good news Spiderlashes! Are you affected by weather as I am?
Originally Posted by juanab
The cold was really hurting my knees and ankles. And I always get those seasonal affect disorder type symptoms (much happier in the summer when it's sunny out).

But already my mood is better and my joints aren't as achy.

(I know joint pain, per se, isn't part of fibro, but it might have been the myofascia attached to my joints?)

eta - most of this thread is about supplements...but is anyone having any success w/ prescription meds?
3b (with 3c tendencies) on modified CG

I finally went to see a rhuematologist (the top one in my city) and she diagnosed me officially w/ fibro. So now I have a real explanation. She immediately put me on Neurontin (gabapentin), an anti-seizure med, and told me to increase the dosagage gradually over the next 8 weeks. I'm only at week two and the improvement, so far, is remarkable!

I was having so much pain and stiffness in my knees, I thought I had develped osteoarthritis and would need my knees replaced...soon. Turns out, it was the fibro, bc they don't hurt anymore.

I used to stumble out of bed and lumber to the bathroom, hunched over, unable to bend my knees or my foot joints. Now I get out of bed w/ ease and feel like i'm gliding along on air.

I still have a lot of stiffness in my neck and upper body...but maybe as I continue to increase the dosage, I will see an improvement there, too?

Has anyone tried Neurontin?
Originally Posted by spiderlashes5000
Glad the med is helping.
Increasing gabapentin affects everyone differently. some find it causes drowsiness at higher doses.
Gabapentin is a serious drug mugger of magnesium, vit d and folate. If you take mag, it needs to be separated by 2-4 hrs from gabapentin. If you use mag oil or angstrom, no separation needed.
spiderlashes5000 likes this.
That is good news Spiderlashes! Are you affected by weather as I am?
Originally Posted by juanab
The cold was really hurting my knees and ankles. And I always get those seasonal affect disorder type symptoms (much happier in the summer when it's sunny out).

But already my mood is better and my joints aren't as achy.

(I know joint pain, per se, isn't part of fibro, but it might have been the myofascia attached to my joints?)

eta - most of this thread is about supplements...but is anyone having any success w/ prescription meds?
Originally Posted by spiderlashes5000
Most people find the best results with a combo of meds and supps. Ideally you want to get to the root of the problem and address that. No one has a gabapentin (cymbalta, sacella, lyrica, etc) deficiency. Something else is going on that has allowed this condition to develop.
That is good news Spiderlashes! Are you affected by weather as I am?
Originally Posted by juanab
The cold was really hurting my knees and ankles. And I always get those seasonal affect disorder type symptoms (much happier in the summer when it's sunny out).

But already my mood is better and my joints aren't as achy.

(I know joint pain, per se, isn't part of fibro, but it might have been the myofascia attached to my joints?)

eta - most of this thread is about supplements...but is anyone having any success w/ prescription meds?
Originally Posted by spiderlashes5000
Most people find the best results with a combo of meds and supps. Ideally you want to get to the root of the problem and address that. No one has a gabapentin (cymbalta, sacella, lyrica, etc) deficiency. Something else is going on that has allowed this condition to develop.
Originally Posted by crimsonshedemon
Yes, I def appreciate the role magnesium has played! (And for all the awesome knowledge you dropped in this thread.) The mag was working really well for me for a while and I had actually been able to stop taking Flexeril. Then I went to a chiropractor and he gave me an adjustment that really messed me up and my successful run w/ the magnesium ended. I still take it to help w/ other things, tho.

I'm all for natural remedies and like it when my body can heal itself or I can heal myself w/ foods or supplements. But sometimes problems are more complex...and this problem is neurological.

***

Well, I think I might have spoken a wee bit too soon. Some of the Nuerontin's effect wore off. Whenever I increase my dosage, it get all kinds of relief from my symptoms. Then I guess my body adjusts and I don't feel as good. But a little improvement is better than no improvement at all so i'm still happy. And I can't wait until my next disage increase!
3b (with 3c tendencies) on modified CG


The cold was really hurting my knees and ankles. And I always get those seasonal affect disorder type symptoms (much happier in the summer when it's sunny out).

But already my mood is better and my joints aren't as achy.

(I know joint pain, per se, isn't part of fibro, but it might have been the myofascia attached to my joints?)

eta - most of this thread is about supplements...but is anyone having any success w/ prescription meds?
Originally Posted by spiderlashes5000
Most people find the best results with a combo of meds and supps. Ideally you want to get to the root of the problem and address that. No one has a gabapentin (cymbalta, sacella, lyrica, etc) deficiency. Something else is going on that has allowed this condition to develop.
Originally Posted by crimsonshedemon
Yes, I def appreciate the role magnesium has played! (And for all the awesome knowledge you dropped in this thread.) The mag was working really well for me for a while and I had actually been able to stop taking Flexeril. Then I went to a chiropractor and he gave me an adjustment that really messed me up and my successful run w/ the magnesium ended. I still take it to help w/ other things, tho.

I'm all for natural remedies and like it when my body can heal itself or I can heal myself w/ foods or supplements. But sometimes problems are more complex...and this problem is neurological.

***

Well, I think I might have spoken a wee bit too soon. Some of the Nuerontin's effect wore off. Whenever I increase my dosage, it get all kinds of relief from my symptoms. Then I guess my body adjusts and I don't feel as good. But a little improvement is better than no improvement at all so i'm still happy. And I can't wait until my next disage increase!
Originally Posted by spiderlashes5000
The cause of fibro can be varied. Something like a mag deficiency, gluten intolerance, etc can cause it even the neurological side (which not all experts agree on).
Things go wrong for a reason- some we have control of and some we dont.

Sounds like your chiro did a job on you. Not good! Mag malate helps with a lot of my muscle pain but doesnt take it away but nothing does completely.

I have systemic lupus, an autoimmune disease. My fibro is secondary caused by lupus. I've improved a lot and have been able to correct a lot of problems caused by all the meds thru out the years. years of vitamin/mineral deficiencies, adrenal fatigue, hypothyroid played havoc on my body. I still take 1 med for it but that's down from 14 that I was on. It took me many years to realize that I had more control of my illness even a potentially fatal illness like lupus. I was sicker at 25 than I am at 37.

Good luck to you and hope the gabapentin continues to help.
Hi Spiderlashes

I am so happy for you that the gabapentin is helping. I haven't taken it but I was on pregabalin/lyrica for some time which I think is similar, it is another one now used for pain which was originally anti seizure. This was for general joint/muscle pain rather than a diagnosis of Fibromyalgia.

Anyway, I found it helped me with some areas of the pain at first so I stayed on it, eventually when I came off the areas which had been helped did not return quite as bad as they had been, so if you do get any side effects you might find that at some point in the future you can have a break or a lower dose without getting as bad again. I don't know, maybe it 'resets' some of the nerve signals. Other pains it didn't help with, I now know what was causing some of them so it kind of makes sense.

One problem I found with the drug was weight gain, I don't know if gabapentin is as bad but it seemed to make me hungry, and reduce my metabolism. As soon as I stopped taking it the weight gain stopped. I did manage to lose some of the weight while still on it though, just had to be very restrained. I would say keep an eye on your weight if that could be an issue for you, if you find the drug is making you gain it is better to know sooner rather than later and adjust your diet or the dose, as it will be the last thing your knees etc need. You can almost certainly manage that and stay on the drug (if it is a problem, hopefully it won't be), I just feel like I wish I'd been more careful from day 1 on it.

Good luck, hope it continues to give you this improvement.

ps. Crimsonshedemon, interesting about the vitamin d link. Not long after stopping the drug my vit D was horribly low. I am sure there were several factors but the drug could have been one.
UK based wavy

Mostly waves, but curls and straight bits too!
Fine to medium, high porosity, medium density, very low elasticity
Highlights damage (growing it out), seems to like protein and need lots of moisture.

Cleanse - CJDF, trying out low poos ; Co wash- Uk chemist brands, Urtekram Rose or Aloe, Hairveda Amala Cream Rinse; RO - varies, Tigi Moisture Maniac, Desert Essence Coconut ; Leave in - Keracare natural textures; Sealant - argan oil
Trying out new things, still looking.

Last edited by lucyprimrose; 11-08-2013 at 06:59 PM. Reason: eta
Hi, I don't have fibro but I do have CMP (Chronic Myofascial Pain) ... it's more muscular based but is similar (to my knowledge)... I understand the frustration and pain you have been through and am glad you have found something that works. I can't imagine the relief it is for you. Mine was triggered after a bad car accident that I never fully recovered from.

I've had a doctor tell me to take magnesium before, but the supplements made me feel lightheaded .... I stopped taking them for that reason. I have heard they are good for muscle spasming though so maybe I should start again.

I feel like I've tried it all with my muscles ... PT, chiro, yoga, massage therapy, acupuncture ... i'm still in pain and don't sleep well at all, leading to chronic fatigue. I guess I'm not sure where to turn next with it.

Anyway, sorry for the vent, but I am so glad you found something that helps you. I hope you are doing well!
Hair Type: Combo of 2A, 2B and 2C ... with a weird straight underlayer
Fine, normal porosity, normal elasticity.

Currently using:
Low Poo: Yes To Cucumbers Color Protection Shampoo
Cowash: VO5 Moisture Milks
Styler: KCCC
Gel: Herbal Essences Totally Twisted Gel, Tigi Bed Head Creative Genius gel

Started CG 9/10/13
A quick question about taking magnesium ... I just asked my brother-in-law, a massage therapist, about it for muscle knots and muscle pain. He said it works well but you have to take potassium and calcium for it to be bioavailable. Does anybody here do that?
Hair Type: Combo of 2A, 2B and 2C ... with a weird straight underlayer
Fine, normal porosity, normal elasticity.

Currently using:
Low Poo: Yes To Cucumbers Color Protection Shampoo
Cowash: VO5 Moisture Milks
Styler: KCCC
Gel: Herbal Essences Totally Twisted Gel, Tigi Bed Head Creative Genius gel

Started CG 9/10/13
Hi Spiderlashes

I am so happy for you that the gabapentin is helping. I haven't taken it but I was on pregabalin/lyrica for some time which I think is similar, it is another one now used for pain which was originally anti seizure. This was for general joint/muscle pain rather than a diagnosis of Fibromyalgia.

Anyway, I found it helped me with some areas of the pain at first so I stayed on it, eventually when I came off the areas which had been helped did not return quite as bad as they had been, so if you do get any side effects you might find that at some point in the future you can have a break or a lower dose without getting as bad again. I don't know, maybe it 'resets' some of the nerve signals. Other pains it didn't help with, I now know what was causing some of them so it kind of makes sense.

One problem I found with the drug was weight gain, I don't know if gabapentin is as bad but it seemed to make me hungry, and reduce my metabolism. As soon as I stopped taking it the weight gain stopped. I did manage to lose some of the weight while still on it though, just had to be very restrained. I would say keep an eye on your weight if that could be an issue for you, if you find the drug is making you gain it is better to know sooner rather than later and adjust your diet or the dose, as it will be the last thing your knees etc need. You can almost certainly manage that and stay on the drug (if it is a problem, hopefully it won't be), I just feel like I wish I'd been more careful from day 1 on it.

Good luck, hope it continues to give you this improvement.

ps. Crimsonshedemon, interesting about the vitamin d link. Not long after stopping the drug my vit D was horribly low. I am sure there were several factors but the drug could have been one.
Originally Posted by lucyprimrose
Weight gain is def one of my fears (bc yrs ago, I was put on an antidepressant to help w/ these symptoms and I gained 90 pounds! But I eventually lost 75 pounds of it.)

Weight gain is a common side effect of Lyraca, so i wasn't taking any chances w/ that! But Gabapentin (Neurontin) doesn't have that side effect. I think it's pretty different than Lyrica; it's primarily an anti-seizure med. That worried me a bit...

I will be increasing my dosage again tonight. I'm curious what i feel like tomorrow and Friday. So far, I've been experiencing a huge decrease in my symptoms on the first/second day, and then the huge improvement kinda wears off. Overall, Ido feel a net improvement on it, tho.

That's great info - meds can reset my nerves. Good to know that's a possibility.

Glad your symptoms aren't as bad as before.
3b (with 3c tendencies) on modified CG

It is interesting to hear gabapentin is not as bad re weight gain, I'll definitely bear that in mind for the future!

When it comes to the idea that it might reset your nerves, that is really just me speculating, but doctors have told me before that if you have a long term injury or whatever, sometimes you carry on getting pain even after the mechanical cause is removed, since your brain has got into a 'habit' of sending those signals. I do not know fully how it works but I found that with one of two areas of pain, the lyrica reduced it and to my surprise when I came off the lyrica it was not as bad as before. This didn't apply to all areas of pain, but the ones that remained bad had an ongoing mechanical cause. It could be they'd just improved anyway, but it seems like dampening pain signals for a few months/years on a drug might help. Just a guess really. There is so much still to be discovered about chronic pain! Hope they make some breakthroughs soon.

Good luck with it all.
spiderlashes5000 likes this.
UK based wavy

Mostly waves, but curls and straight bits too!
Fine to medium, high porosity, medium density, very low elasticity
Highlights damage (growing it out), seems to like protein and need lots of moisture.

Cleanse - CJDF, trying out low poos ; Co wash- Uk chemist brands, Urtekram Rose or Aloe, Hairveda Amala Cream Rinse; RO - varies, Tigi Moisture Maniac, Desert Essence Coconut ; Leave in - Keracare natural textures; Sealant - argan oil
Trying out new things, still looking.
It certainly shows how drugs react differently depending on the person. I gained 35 lbs on gabapentin. My doctor took me off of it.

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
.




It certainly shows how drugs react differently depending on the person. I gained 35 lbs on gabapentin. My doctor took me off of it.
Originally Posted by juanab
Ugh. Were you able to lose the 35 lbs after you discontinued it?

Clothes are feeling tight on me or not fitting at all. not sure if I'm just eating more or if it's the Nuerontin?

Still the best and most consistent relief comes from taking two Flerxerall before bed and having good night sleep. With as-needed stretching and hot baths, putting pressure on the extra sore spots.

eta -- I've gained 13 lbs since my last visit! Could it be??? PMing you.
3b (with 3c tendencies) on modified CG


Last edited by spiderlashes5000; 12-18-2013 at 02:06 PM.
So about a year ago, my job moved to a different location...a building w/ fewer individual offices. So most of us, besiides the VIPs, got stuck in cubicles. There were actually a few empty offices left that were not assigned to anyone that they felt they had to leave empty bc if they gave them to any of us peons, all the rest of the peons who didn't get one would be mad and grumbling. Very political hoarding of office space & jockeying for power. So it was my first experience in a cube...there were tons of other ppl crammed into cubes and a handful of unoccupied offices going to waste. Lots of noise and disruptions, esp in my section bc it's the main hub of activity.

So I asked for an office and was approved. And the day before I started to move my stuff, the offer was rescinded. I was pissed bc it was too noisy and unbeknownst to me at the time, the reason I was so bothered by the noise was bc of my fibro. I knew I had fibro bc of the pain, but didn't know about fibro fog or noise sensitivity.

Reading this thread, in part, is what motivated me to seek an official diagnosis and connect the dots btwn all of the weird symptoms I have. (There was another reason, too.)

So I saw a specialist and after a few visits, was given an official diagnosis. I started reading more about the condition and came to under stand the noise sensitivity component. Then I applied for a "reasonable accommodation" at my job - my own office w/ a door that closes.

I was worried that the panel who evaluates these applications would be too unfamiliar w/ fibro's symptoms they wouldn't be able to make the connection and would not give me an office. So I printed off fact sheets from webmd and other sites and burned a CD that captured the ambient noise in my work area. My dr. wrote exactly what I needed her to (w/o any coaching from me) and I wrote the best narrative that I could, explaining

Well, I just found out today that my application was approved! I am getting my own office again. I will be able to block out the noise and stretch a few times a day as well.

I guess, some ppl are starting to take this disorder seriously. And I'm taking my symptoms seriously...no more of that blaming myself stuff or trying to overcompensate or minimize. This is a real medical condition.

I wish you all well on the journey. Thanks
3b (with 3c tendencies) on modified CG


Last edited by spiderlashes5000; 02-10-2014 at 06:26 PM.
This is awesome news!

Sent from my SCH-I535 using CurlTalk App
Modified CG since Dec 2011
Growing out super short cut

High porosity, fine, unknown curl type, somewhere in the 2s at the moment
Mostly low poo
Current rotation includes:
Wash: Yes To Carrots -Condition: Yes to Cucumber, Nature's Gate Jojoba, One C - Stylers: Deva volumizing foam, Deva UDG B'Leave In, Foxy Curls Hi-Def Curl spray
Spider, that is fantastic news! Kudos to you for pushing for your accommodations.

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
.




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