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Posted 11/1/2009 4:43 AM (GMT 0)
Hello,

    I just found this board and have been reading and it feels good to other peoples experiences . I was diagnosed with fibro 6 yrs ago after suffering for a few years and docs trying to tell me it was just depression. Obviously, I got that way after a while since I was constantly being treated as a hypochondriac. I don't seem to tolerate meds very well. The depression meds either made me crazy or made me not care about anything. I didn't like the feeling and neither did my family like the effect it had on me. I finally decided last year to let my rheum. prescibe lyrica. I had a face rash and itchy reaction. She promptly took me off and prescribed neurontin. I took it for a couple of days. I started with numbness in my arms and then ended up in er because my whole face went numb, traveled down my arms and legs and by the time my husband got home, I was having an out of it drug induced experience. ( I sure was happy, though, not really present) They thought I had taken some hard drugs at the er. Anyway, I haven't been back to rheum. since. I have been trying to deal with herbs and vitamins and lots of ibuprophen. I am having bad reflux now and am on med. for the reflux plus tums. I also have ibs which is constantly aggravated.  I am assuming it is the amount of ibuprophen I take to get through my days. I have made an appt. with rheum. but can't get in till mid Dec. I am looking forward to trying the malic acid that is spoken of on this board and am hopeful that it will bring some relief. Anyway, I was doing research and came across the use of ritalin for fibromyalgia and was wondering if anyone has tried this to help with energy and to help with the fog.   I plan on talking to rheum. in Dec. but was hoping someone might have some experience with this or any other medications other that lyrica/neurontin that have been helpful.

Thanks so much,

Shar

Posted 11/1/2009 6:08 AM (GMT 0)
Hi Shar!!

And I'm glad you've joined our family! This truly is a great bunch of folks and because of them I am living a much better and richer life in spite of fibro. I too had recently read about the use of Ritalin for fibro. The reason some had tried it was because to combat the sleepiness and grogginess of either the fibromyalgia or the strong pain medications. Currently the only one that is fairly good at righting sleepiness is Provigil and not only is it wildly expensive, but insurance companies are deciding how much you need, over and above what your doctor prescribed. It's happening to lots of folks.

But for more information on medications and alternative help for fibro pain, take some time and read the Fibro 101 section at the top of the column. There's a great list of resources in there that answers common questions.

You really are very sensitive to medications, it sounds like. I was at a point that I needed antidepressant medications but a regular dose did to me what it did to you. I had put it off for 2 years and finally told my doc I was willing to try instead of living life like a train wreck. After I had to start at 1/2 an introductory dose and still had trouble with some of them. What my doctor explained is that a specific antidepressant will be effective for about 2 years and then will stop working. At that point you can switch to a different one since there are so many out there...differences in name brands, how they work and what part of the system they work on. I finally found one I could tolerate but I told him all I needed to do was lick the lid of the bottle to get enough...lol

Trying to adjust medications is very difficult for a lot of us and sometimes we can find other ways that are just as effective and easier on the bodies...other times we have to learn to tolerate them. But ultimately what you take is always your choice.

I hope your appointment goes well and that you can find a regime soon that helps. In the mean time get to know the folks here, ask a lot of questions and share your experiences with those who are newer to fibro and also joint in some social fun with out daily Koffee Klatch and our weekly Chat Night.

Warm hugs,
Chutz
Posted 11/1/2009 1:47 PM (GMT 0)
Hi Shar and welcome to the family. It would be nice if there was one med out there that we could all take for fibro but as you are learning it is trial and error. I take 100 mg of amitriptyline, it's an old anti-depressant but it is rxd for fibro quite often. I was on it when I was dxd with fibro for anxiety and depression. I tried adderal but it gave me more anxiety instead of energy. I don't have a problem with getting sleepy during the day as long as I sleep pretty good at night. I tried neurontin not long ago and didn't like the way it made me feel. This fall has been really hard on me plus I have been more active so I relented and tried vicodin out of desperation and a little of it takes the edge off the pain, I don't take as much as I could.

 

It also seems that different doctors have their own ideas of what works and what doesn't work. My rheumy never seemed to be a big fan of lyrica. But both my doctors have been open to things I learn about on here that I want to try.

 

luv and hugs

Marlee

 

 

Posted 11/1/2009 6:04 PM (GMT 0)

Hi, Shar, and welcome!  I'm happy you found us and joined in.  I, too, use ibuprofen with food but I NEVER take more than 2,400 mg a day...the highest safe amount.  If I take two (400 mg) they don't help me a bit but if I take 3 (600 mg) at a time, I do get relief.  I will take three every six or eight hours.  (I also take Prilosec to help protect my stomach.  My doctor says it protects the stomach from ulcers 70% of the time and those are pretty good odds.  It did help with the acid reflux, too.)  If I'm in a flare, I will take a couple of extra strength Tylenol to take the edge off, too.  I'm never without pain but I have control of the pain and can live an enjoyable life.

I also use malic acid/magnesium supplements and extra vitamin D3.  There are links in the Fibro 101 thread all about these and how they work in the body.

You do need to keep moving with fibro.  If you sit or lay too much, you will be stiff as a board.  Gentle stretching and gentle exercises really do help with the pain and help keep the muscles flexible.  There are some good stretching exercises in the Fibro 101 thread.  My form of exercise is walking and I will also swim.  Both of these are good for fibro.

I wish I had an answer to what helps with the fog.  The best thing I found was a good sense of humor.  shocked    I try to concentrate as much as possible to help me remember but I still mess up all of the time.  I just remembered a book I read years ago that helped me but I can't find my copy now.  I'm going to buy another copy and reread it.  It really did help me.  It's called The Memory Book. 

I'm so glad you joined our fibro family.  I am looking forward to hearing more from you soon.

Sherrine

Posted 11/1/2009 7:02 PM (GMT 0)
Thanks for all the welcomes! I guess I get really worried about taking too much stuff. Yes, I do the 3 ibuprophen(600mg) at a time and during that special time when it is really bad I do 4. I try not to take it if I don't need it. Right now I feel like I need a lot more! But of couse I won't do it. My problem is that I will start to feel better and stop taking everything and then I start going downhill. I wish I wasn't so afraid of interactions and the affect that stuff has on your body over time. I sometimes wonder if I'm ruining my body but then getting through each day seems to be more important right now. Sigh. I did get the malic acid today and popped them quickly with a higher dose of D. How long has it taken others to see the effects? Thanks again for listening. I don't like to talk about my pain because I feel like I'm whining and people don't understand because I look perfectly young and healthy and even have good days where I am like a bull once again. I'm so glad to have this board now! I'll try not to whine too much....

I take Ibuprophen, Syntroid, Omeprazole, Garlic, Oil of oregano, Black currant oil, Triple Omega 3/6/9, Valerian, 5-htp, multivitamin, D, Daily fiber and sometimes cascara sagrada to keep thing moving, generic benedryl for sleep and now the malic acid/magnesium.

I'm 36 and have Arthritis, IBS, Fibromyalgia,Hypothyroid, Reflux, Social anxiety disorder (controlled mostly now unless I'm in serious pain and I try to crawl into a hole to hide like an animal), Panic disorder (no episodes in a while) Migraines, degentertive neck problems, Chronic sinusitis, Asthma, chronic respiratory infections, dust allergy

I have 2 girls 11 & 14 and we homeschool
Posted 11/1/2009 10:45 PM (GMT 0)

Be sure and start the malic acid/magnesium supplements slowly.  Magnesium can cause diarrhea so you want you have your body get used to it.  I've explained this in the link about malic acid in Fibro 101.  I hope these work for you!

Sherrine

Posted 11/3/2009 6:10 AM (GMT 0)
I'm on Savella and have had no side effects, by some miracle. Well, it actually does give me extremely vivid dreams but I don't mind that - it's actually kind of nice after not dreaming for years.

Savella is not the answer for me, though. What it does is keep me from having flares. So instead of having a baseline of pain and having days that are awful, I am at my baseline most days and some days I am a little worse (usually for a good reason, like going up too many stairs). It helps but there's still a lot of room for improvement.

A nice thing about Savella is that it comes in a two-week package with gradually increasing doses, and you can get the half and quarter doses by prescription if you need longer to adjust than the pack gives you. I took it with food and had only slight nausea. Now (three months in) I don't need to take it with food because it doesn't make me nauseous anymore.

I hope you find something that works for you!

-Sandi
Posted 11/3/2009 10:12 PM (GMT 0)
I normally post on the Crohn's board, but I thought that something that i read might be interesting for people here. It deals with research on intestinal bacteria and the relationship between SIBO (small intestinal bacterial overgrowth) and a number of illnesses, including FM. The information is towards the end of the page: http://journals.lww.com/co-gastroenterology/Fulltext/2008/01000/Alterations_in_intestinal_microbial_flora_and.4.aspx
Posted 11/4/2009 4:14 AM (GMT 0)
Hi there and welcome to the forum.

I tried concerta, which is a type of ritalin. But the way that it was in a plastic barrel, I couldn't seem to get it into my system correctly. But it did help. I now take adderall, and it is a life saver. I wouldn't get out of bed if it weren't for that.

I also take pain meds, meds to sleep on. Antidepressants, cholesterol and blood pressure medications. Also the malic acid/magnesium and vite D3.

I hope that this helps some.

Hugs Karen
Posted 11/4/2009 6:53 PM (GMT 0)
I have taken adderall, I have some. I do have trouble finding a dr 2 prescribe it. I do not see the original dr anymore and just still have some left over. I do not take them every day because my husband does not like them.
Posted 11/4/2009 8:12 PM (GMT 0)
& I forgot to say that they are helpful. They do help w/ fatigue but a stimulant type of medicine may be too much for your sensitivity. They can be pretty rough. But if u do try them, start small.
Posted 11/5/2009 12:45 AM (GMT 0)
Cat,

I hope that you find a doctor that will continue to prescribe your adderall. Mine wont give it to any new patients, just the ones that he is already prescribing them to. I feel very fortunate to have them to help me. Why doesn't your husband like them? Especially when they help you so much.

Hugs, Karen
Posted 11/5/2009 5:37 AM (GMT 0)
my husband is ignorant about fibro. he does not like meds and he fully expects me to wake up one day and "snap" out of this "funk" that i'm in, and then i'll realize that i don't really hurt. it sucks.

my friend told me today that eventually i'm going to have to make my needs come first if i'm ever going to make any progress. she is sooo right.
Posted 11/5/2009 4:28 PM (GMT 0)
I love me some Tramadol, but only for times when I'm absolutely dead from pain. Otherwise I use nothing.
Posted 11/5/2009 8:42 PM (GMT 0)
Morning Shar,

   It's good to see another who thinks along the herbal line. I'm 55 and have had arthritis for 48 years, fibro

was diagnosed about 5 yrs or so. I've tried alot of dr drugs since being diagnosed with the arthritis at 25.

Then with the fibro came many more. Some of the side effects were the rashes and skin problems, hair

loss, severe dry mouth, nightmares, even MORE pain. I finally went to malic acid, super cissus rx and

bio-sil. I am now off all dr. pain meds and only need aleeve or tylenol a few times a month. In the first 2

months I also used the normal dr drugs then needed less and less until about month 4 I didn't need any.

The super cissus has a built in painkiller (all plant based)

    For acid refluc try essiac tea. It was patented by Renee Cassie, I know people who swear by it.

The guy I'm with included.

     For skin colustrum and hylaronic acid seem to be the best combo.....it also works wonders on the

sinuses as the colustrum is an immune system booster. I know personally that I usually has a sinus

infection every month but since using it I've only had one this year that I couldn't kick. To break up

mucus, marshmallow root works good.

    I've never had migrains but I hear that feverfew works for it.

     Right now I take super cissus rx, bio-sil, malic acid, calcium, B-complex, multi, hair vitimans, vit E,

colustrum, hylaronic acid, primrose, lecithin, lipo trim (to shrink lypoma), true calm (works on

neurotransmitters), bromelain, vit D, echanecia (when needed), marshmallow root (when needed),

white willow bark (when needed)

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