anyone here with fibromyalgia?? - Page 2

Magicsmom · 09-22-2009, 08:16 AM

Another issue about support groups is that you run the risk of trying this and that because something worked for someone in the past. It gets to the point where you spend a lot of money and time trying new things all the time.

Caro, it sounds like your dose of Lyrica isn't high enough. I think the problem with all of these drugs is that your will grow accustomed to them, but it's so sweet to have a respite from the pain for a while.

Caro · 09-22-2009, 10:09 AM

i am calling my dr today to see about increasing the dosage.. she should be back from vacation..

thanks for the support and encouragement.. its tough.. but im gonna be ok!

Magicsmom · 09-22-2009, 11:53 AM

Caro, one thing to take into consideration is that with fibromyalgia, you have good seasons and bad ones. My worst times are the spring and fall. Lately, I've been aching all over, in spite of my 400 mg. per day dose of Lyrica. I do get breakthrough pain anytime of the year, especially during my spells. This past week has been really hard. One thing I notice is that I feel bad first thing in the day, pretty good in midday, then start going downhill again toward evening. It doesn't help at all that my favorite sofa is at the re-upholsterer's place for a makeover. The chairs I have to sit in just aggravate my situation. Last night, I laid on the floor out of sheer desperation.

Caro · 09-23-2009, 10:07 AM

thats me.. i feel rough in the am.. then middle of the day ok..then by night omg.. again.. but my lower back is killing me.. its to the point where doing any of my normal stuff becomes hard and painful.. folding clothes, washing dishes, anything.. and my shoulders and elbows.. the weakness in my arms is bad..

just UGH! however i do have to call to see about an increase in the meds.

Caro · 09-24-2009, 01:06 PM

well i went in today.. needless to say im up on the scale and im having swelling but she did say that it would level off as i take the meds.. and she upped my dose for now.. and we will see how this does.. she also would love to have me swimming for exercise.. so im checking into joining the ymca around here and see.. b/c my daughter had knee surgery in jan & june and swimming would be great for her.. so ..

she did do a "pressure test" on me and said that with all that ive been through all my symptoms the fact all my tests are normal.. pretty much yes she agrees i have fibromyalgia.. needless to say i didnt realize some of hte places i was senstive to the touch..

Tirjasdyn · 10-14-2009, 12:45 PM

Hi all,

I haven't been fully diagnosed yet. Still doing tests, but the doc is pretty sure and is even calling the blood tests at this point a formality.

I have PCOS and Hypothyroidism. I hadn't been feeling bad and just thought that foggy brain, tiredness, and aching were all a part of the above. 8 weeks ago my doc upped my thyroid medications because the numbers came back wonky after being on the same dose for 5 years. At first I felt great. Then my lymph nodes swelled, I had a ton of nausea and the pain go so bad...I could barely walk. I started forgetting things, like what green lights were for.

So I went back in today. She did the pressure test and asked a lot of questions. I just got a lot of blood taken to rule out hypo acting up and a bunch of other bad things, like lupus.

If all those are okay I have to get a sleep test...then who knows? I feel so tired and I just want to be able to stay up during the day.

voj · 10-14-2009, 01:21 PM

Quote:

Originally Posted by cindy_cfids

The only thing that has really worked for me is guaifenesin (Mucinex - cheaper off ebay) from Dr.St.Amand's protocol. I've been using it for about 8 years & it manages my pain. I don't agree with him that it cures I am worse than I was but it does manage the pain & most days I am mostly pain free. Some things (expecially herbs) will block the effectiveness. I stopped everything when I started guai & after it started working, I didn't need half the stuff I was taking before. Before guai, I had constant infections & had to take garlic every day to keep it under control, but that was from pooled lymph fluid also.

I agree with the Mucinex theory.....it really helped me too. Gave up aspirin products also helped.

nasalady · 10-19-2009, 12:53 AM

Hi,

I have fibro too, plus autoimmune hepatitis, hashimoto's thyroiditis, psoriasis, celiac disease, rheumatoid arthritis, and possible lupus.

A lot of the meds make me gain weight (prednisone, Lyrica, Cymbalta....), does a low carb diet still work for you when you're on these meds?

Thanks,
JoAnn

engagedtone · 10-19-2009, 09:57 AM

If you're in the US, Dollar Tree sells a version of Mucinex for $1 for six pills. I don't know if it would be suitable for this or not, but worth looking into.

Rdm · 10-20-2009, 07:22 PM

Have a full thyroid panel and Vitamin D testing done also. There are some with Fibro who can't properly convert t4 to t3 a the cellular level and sometimes also have a Vit D deficiency. Sometimes the t4/t3 protocol of meds will work or even just a dosage of Cytomel will help Fibro.

Magicsmom · 10-28-2009, 08:27 AM

Quote:

Originally Posted by nasalady

Hi,

I have fibro too, plus autoimmune hepatitis, hashimoto's thyroiditis, psoriasis, celiac disease, rheumatoid arthritis, and possible lupus.

A lot of the meds make me gain weight (prednisone, Lyrica, Cymbalta....), does a low carb diet still work for you when you're on these meds?

Thanks,
JoAnn

I have several autoimmune diseases as well. I do take Lyrica, as I would have no quality of life without it. While weight loss is slow for me, it is not impossible. Low carb works for me, but I'm insulin resistant.

Quote:

Originally Posted by Rdm

Have a full thyroid panel and Vitamin D testing done also. There are some with Fibro who can't properly convert t4 to t3 a the cellular level and sometimes also have a Vit D deficiency. Sometimes the t4/t3 protocol of meds will work or even just a dosage of Cytomel will help Fibro.

Large doses of Vitamin D are contraindicated for people with autoimmune diseases. Vitamin D in us will trigger a severe autoimmune response, and the result is HORRIBLE. Do not take mega doses of Vitamin D if you have any autoimmune disorders, please!

Rdm · 11-02-2009, 10:57 AM

I have Fibro-it is not an autoimmunine disease. Vitamin D has not worsened my Fibro but helped with it's symptoms as has increasing my omega 3's.

Tirjasdyn · 11-04-2009, 10:08 AM

Just an update. The blood work all came back negative but the doc upped my thyroid meds just in case.

I got the sleep study done. Also no sleep problems.

I'm suppose to see my doc in dec...but I don't know if I can wait that long.

StephStu · 11-10-2009, 07:08 PM

I have lupus with fibro and CFS. I can't take steroids, so it's been difficult for me. My fibro is getting worse, and so is the CFS. That's one reason I'm going low carb, because the sugar addiction was making it all much worse.

I have all the same symptoms you do. Heat is my enemy, which is bad, since I live in FL. I'm basically housebound in the summer. The brain fog is the worst part. Some days all I can manage to do is sit and watch t.v., because I can't think enough to do anything else.

I'm hoping by changing my diet, taking the EFA, Kelp and Selenium and more vitamins, I will get better. It's a last resort.

09-22-2009, 11:53 AM	#33
Magicsmom Committed to Succeed Join Date: Jan 2004 Location: Washington state Posts: 23,807 Gallery: Magicsmom Stats: 282/203.5/140 WOE: Atkins Start Date: January 2004	Caro, one thing to take into consideration is that with fibromyalgia, you have good seasons and bad ones. My worst times are the spring and fall. Lately, I've been aching all over, in spite of my 400 mg. per day dose of Lyrica. I do get breakthrough pain anytime of the year, especially during my spells. This past week has been really hard. One thing I notice is that I feel bad first thing in the day, pretty good in midday, then start going downhill again toward evening. It doesn't help at all that my favorite sofa is at the re-upholsterer's place for a makeover. The chairs I have to sit in just aggravate my situation. Last night, I laid on the floor out of sheer desperation. __________________ Terry The apples of my eye are in my avatar. Magic on the right, and A.C. on the left. My sweet boys. My Facebook Killing threads since 2004

09-24-2009, 01:06 PM	#35
Caro lc hottie Join Date: Dec 2002 Location: ~eastern NC~ Posts: 18,031 Gallery: Caro Stats: see SIG! lol WOE: im not fat.. i just havent grown into my body yet. Start Date: org. 7-6-03.. start ovr..one more time!	well i went in today.. needless to say im up on the scale and im having swelling but she did say that it would level off as i take the meds.. and she upped my dose for now.. and we will see how this does.. she also would love to have me swimming for exercise.. so im checking into joining the ymca around here and see.. b/c my daughter had knee surgery in jan & june and swimming would be great for her.. so .. she did do a "pressure test" on me and said that with all that ive been through all my symptoms the fact all my tests are normal.. pretty much yes she agrees i have fibromyalgia.. needless to say i didnt realize some of hte places i was senstive to the touch.. __________________ Made a decision to be the best I can.. love who I am exactly HOW i am .. or do something about it!! ~started Weight Watchers 7-20-09~ Beg: 212/Current: 203.0/Goal: 150 ~~Daily I am blessed, I choose to take the blessing, believe in it or deny it.. which one would be better???!!!... Daily Im choosing to TAKE IT! and BELIEVE IT!!~

10-14-2009, 12:45 PM	#36
Tirjasdyn Senior LCF Member Join Date: Aug 2008 Location: Colorado Posts: 74 Gallery: Tirjasdyn Stats: 194/160/150 (current goal) WOE: 6 Week Cure / Atkins Start Date: August 11th 2008	Hi all, I haven't been fully diagnosed yet. Still doing tests, but the doc is pretty sure and is even calling the blood tests at this point a formality. I have PCOS and Hypothyroidism. I hadn't been feeling bad and just thought that foggy brain, tiredness, and aching were all a part of the above. 8 weeks ago my doc upped my thyroid medications because the numbers came back wonky after being on the same dose for 5 years. At first I felt great. Then my lymph nodes swelled, I had a ton of nausea and the pain go so bad...I could barely walk. I started forgetting things, like what green lights were for. So I went back in today. She did the pressure test and asked a lot of questions. I just got a lot of blood taken to rule out hypo acting up and a bunch of other bad things, like lupus. If all those are okay I have to get a sleep test...then who knows? I feel so tired and I just want to be able to stay up during the day. __________________ Michelle http://michellejnorton.com

11-10-2009, 07:08 PM	#44
StephStu Senior LCF Member Join Date: Nov 2009 Posts: 143 Gallery: StephStu	I have lupus with fibro and CFS. I can't take steroids, so it's been difficult for me. My fibro is getting worse, and so is the CFS. That's one reason I'm going low carb, because the sugar addiction was making it all much worse. I have all the same symptoms you do. Heat is my enemy, which is bad, since I live in FL. I'm basically housebound in the summer. The brain fog is the worst part. Some days all I can manage to do is sit and watch t.v., because I can't think enough to do anything else. I'm hoping by changing my diet, taking the EFA, Kelp and Selenium and more vitamins, I will get better. It's a last resort. __________________ 150 149 148 147 146 145 1st 5 lbs. gone! 144 143 142 141 140 ... 125 Last edited by StephStu; 11-10-2009 at 07:12 PM..

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09-22-2009, 08:16 AM	#31
Magicsmom Committed to Succeed Join Date: Jan 2004 Location: Washington state Posts: 23,807 Gallery: Magicsmom Stats: 282/203.5/140 WOE: Atkins Start Date: January 2004	Another issue about support groups is that you run the risk of trying this and that because something worked for someone in the past. It gets to the point where you spend a lot of money and time trying new things all the time. Caro, it sounds like your dose of Lyrica isn't high enough. I think the problem with all of these drugs is that your will grow accustomed to them, but it's so sweet to have a respite from the pain for a while.

09-22-2009, 10:09 AM	#32
Caro lc hottie Join Date: Dec 2002 Location: ~eastern NC~ Posts: 18,031 Gallery: Caro Stats: see SIG! lol WOE: im not fat.. i just havent grown into my body yet. Start Date: org. 7-6-03.. start ovr..one more time!	i am calling my dr today to see about increasing the dosage.. she should be back from vacation.. thanks for the support and encouragement.. its tough.. but im gonna be ok!

09-23-2009, 10:07 AM	#34
Caro lc hottie Join Date: Dec 2002 Location: ~eastern NC~ Posts: 18,031 Gallery: Caro Stats: see SIG! lol WOE: im not fat.. i just havent grown into my body yet. Start Date: org. 7-6-03.. start ovr..one more time!	thats me.. i feel rough in the am.. then middle of the day ok..then by night omg.. again.. but my lower back is killing me.. its to the point where doing any of my normal stuff becomes hard and painful.. folding clothes, washing dishes, anything.. and my shoulders and elbows.. the weakness in my arms is bad.. just UGH! however i do have to call to see about an increase in the meds.

10-19-2009, 12:53 AM	#38
nasalady Junior LCF Member Join Date: Oct 2009 Location: Southern California Posts: 7 Gallery: nasalady WOE: gluten/grain free, sort of paleo + dairy Start Date: October 2009	Hi, I have fibro too, plus autoimmune hepatitis, hashimoto's thyroiditis, psoriasis, celiac disease, rheumatoid arthritis, and possible lupus. A lot of the meds make me gain weight (prednisone, Lyrica, Cymbalta....), does a low carb diet still work for you when you're on these meds? Thanks, JoAnn

10-19-2009, 09:57 AM	#39
engagedtone Junior LCF Member Join Date: Oct 2009 Posts: 5 Gallery: engagedtone WOE: Modified Atkins Start Date: August 2009	If you're in the US, Dollar Tree sells a version of Mucinex for $1 for six pills. I don't know if it would be suitable for this or not, but worth looking into.

10-20-2009, 07:22 PM	#40
Rdm Senior LCF Member Join Date: Sep 2009 Posts: 129 Gallery: Rdm	Have a full thyroid panel and Vitamin D testing done also. There are some with Fibro who can't properly convert t4 to t3 a the cellular level and sometimes also have a Vit D deficiency. Sometimes the t4/t3 protocol of meds will work or even just a dosage of Cytomel will help Fibro.

11-02-2009, 10:57 AM	#42
Rdm Senior LCF Member Join Date: Sep 2009 Posts: 129 Gallery: Rdm	I have Fibro-it is not an autoimmunine disease. Vitamin D has not worsened my Fibro but helped with it's symptoms as has increasing my omega 3's.

11-04-2009, 10:08 AM	#43
Tirjasdyn Senior LCF Member Join Date: Aug 2008 Location: Colorado Posts: 74 Gallery: Tirjasdyn Stats: 194/160/150 (current goal) WOE: 6 Week Cure / Atkins Start Date: August 11th 2008	Just an update. The blood work all came back negative but the doc upped my thyroid meds just in case. I got the sleep study done. Also no sleep problems. I'm suppose to see my doc in dec...but I don't know if I can wait that long.