Fibromyalgia Community

Rachg810... I too am sensitive to some meds... I am on a lot of them due to multiple illnesses and when I start a new med it always has to be taken separate from the others... Own time and spaced out... Then we can judge if I am having a reaction... But yes I have flared and do flare to some of my meds I have no choice but to take... My colitis meds always have to be taken around the clock and I have to take one every 6 hours and one every 8... They both have flared my FM... I know this because I am sometimes on one or the other and sometimes on both together... I flare every time no matter the situation... I am usually on the two of them together due to the degree of my colitis... and I feel like someone kicks me every dose... But if I wasn't to take these meds I would be in a life threatening situation... I choose the flare...

There are some vitamins and supplements I have reaction to also... So I just am careful with what I do... If it isn't going to have to deal with a life threatening problem I don't take it...

Some of my problems lie in my digestion problems... I have 5 problems in my tummy and they all effect everything I put in there... My biggest problem is my digestion only digests at less then 25 %,... I don't digest meds right just like I don't digest food right... So they have a greater chance to effect me... So it may or may not be my FM causing this or my other illnesses causing my FM flares insted of the meds...
As luck has it

"Such is Life in Jan's World... Unknown and Mysterious as it is..."

Hope you find something that may help soon... Mimi may be of help where vitamins are concerned... and read the tool kit on the right of this under "Helpful Tips"

Take care... Love Jan/Dakota

Hi jan. Thank you for your response! Must be rough to go though. I'm sorry:( I feel for you with many other problems. Ibs, gerd, hypoglycemia, to buldging disc in neck, anxiety and new one insulin resistance....which i'm seeing a specialist for in feb. Just when one flares they all come. This week has been very rough for me. I just feel disconnected from my body. I hope i find something to help once my system calms down. I just feel this nasty prednisone messed me up bad:( Now paying for it in so much pain. Just trying to drink lots of water to flush out!

-Rachg810

Some of us with FM get so sensitized that our whole bodies can no longer react normally to anything. We get irritable bowel, Reyards, Sjogren's and every other syndrome. One time, the pharmacy switched a shiny red generic pill for another manufacturer's shiny yellow pill. Within 20 minutes of swallowing the first one, I was sitting on the john pooping and peeing my guts out, sweating profusely, and shaking like a leaf. I will never injest yellow # 10 again.

This is why a knowledgeable doc will start you on minute doses of any med. Before your physician prescribes any med, remind her that you need a very small dose that can be titrated up as you tolerate it. This can help any bad effects be just small ones--sometimes.

About physical therapy: one of the worst--and longest flares in my 41 years with fibro was triggered by a p t workup. There were several positions and movements that hurt when I did them. They stopped when I stopped, but the next day I was in full body flare. Remind your therapist that you have FM and must be treated to an abreviated and very gentle assessment.
If you know something will hurt if you do it, don't do it. There are enough flares you cannot prevent. Don't guarantee one.

I think magnesium helps. I've found a supplement that includes calcium (and many women need this), magnesium, and zinc with vitamin D. It's white--no dyes. Try a small bottle. If it doesn't work for you give the rest to a friend! She'll thank you for it.

Hope this helps you!

So true and so scary. My Gen doc totally understands what my system can handle. But since i had an allergic reaction from cleaning in a basement....( thats what we think it was from). The ER doc..a doc i never have seen put me on such high doses of prednisone. I don't like seeing any doctors that are not mine. And i hate when you tell them you can't handle something they dont respect that. I hate ER's:( I am still in so much pain from i think my fibro flaring because of reaction then med reaction:/ Thanks for info on supplements. I do take D2000 a day i am low on D. But i also heard of a B complex to help as well with magnesium. Deff looking into to and starting soon once my system feels better. Thanks for your response! Take care!

Rach, sometimes all you can do is go to bed and wait it out. If you have that option, take it. Rest. Drink that water. Give yourself a break.

The only good thing about flares is that they do end. That ER doc was following standard procedure for dealing with immune type conditions. For many of us, it might have stopped a flare-up. For you, it was totally wrong--which you now know and can tell future ER docs. (If you ever get a sinus problem, watch out. They sneak cortisones into a lot of nose sprays.)

If you haven't started a medication diary/ flare diary, do so.
List the meds that worked and those that didn't. Make careful note of any bad reactions. Take it with you to medical appointments. A flare diary listing how you felt, where the pain was, what may have triggered it, and anything that might have helped it to end is a valuable (spelling?!) resourse for you in zeroing in on causes and treatments. When you see your doc for a scheduled visit, you'll have a record of all the symptoms you experienced. This could help your doc help you.

Hope some of this helps. Untill there is a prevention and a heck of a lot better treatments we have to rely on each other for the help that only comes from experience.

BetteK

Hi Bettek! The diary is a good idea! I know rest is a must...my hubby is always telling me to slow down. I have a hard time letting myself rest. I constantly feel as if i need to be doing something. But i was diagnosed only a year ago and still learning about this horrible disease. And trying to find a good pace for me.


Very hard to change your whole life around fibro. Still not knowing everything about it and what makes me have bad and good days. I keep gaining weight and never have energy to exersize. I try to stretch in the mornings. Helps a little.


Well thanks for advice i appreciate it:)

Hello Rachg and welcome....MiMi in NC....So sorry that you are dealing with so much right now....you were asking about Vitamins....I am one of the FMers here who has learned how to *control my FM pain* by taking vitamins and supplements and doing other things as well...only after trying different medicines but not finding anything which really helped me cope better without getting other side effects. You will have to do your own trial and error process...since what works for one person may or may not work for you...we are all different and only you can decide what works for you.

It took me a long time to figure out what exactly I needed....I did a lot of research myself...and then tried different things...I take the following: Fibro Response (found at a vitamin store) or Magnesium Malate (vitamin store)...Omegas, multi vitamin with extra D...(I take Source One 50 found at walmart)...Calcium and Super B Complex...these are the ones which help my FM pain the most...I also take others as well since I do have other issues to deal with. You should try to take them around the same time each and every day....I have found that keeping a schedule is good for me...I also drink plenty of water..(actually this is all I do drink)...watch what I eat...I do gentle stretches and/or exercises...(Gentle being the key word here)..if you are having problems with sleeping...you should also try taking a hot shower right before bedtime using lavender bath salts which help the body to relax so that you can rest better...Getting enough sleep is so very important to me...

I also use a heating pad as needed and Stopain Spray as needed (found at walmart).

You should also be sure and pace, pace and pace even more...with anything and everything you do....allow yourself to do things as you can...and allow your body to rest...we, FMers, can not push ourselves to the limit, like most of us were use to doing...if you learn not to *cross the line*...you will feel so much better. Sometimes we have to pick and choose what to do..and learn to say NO...we can not do that right now.

Physical therapy might be ok....as long as you let them know you have FM...again....start out slow in whatever you do.

You should allow at least 6-8 weeks of whatever you decide to try before making a decision as to whether what you are doing is really helping you, unless, of course, it is making you worse.

A lot of us FMers have multiple health issues...and I will tell you that IF you have other health issues that any and all of them will have to be addressed before you will begin to feel better...(I learned this from my own personal experience).

A lot of doctors do not understand FM and how to treat it...some doctors do not even believe that FM is a real illness....shame on them for not keeping up with what is going on with people these days. I am sure that FM is real....I tried in the beginning to ignor it...thinking that if I did, it would just disappear....it didn't....some doctors think it is all in our head....well, part of this is correct...it has a lot to do with our brain and the nerves as well.

I do hope that you have gotten your Vitamin D level checked....if not....please ASK your doctor to do this...low Vitamin D can cause additional pain for some people and it can also affect other illnesses as well....you can do your own research on this....you might be quite surprised at just how much the medical researchers have discovered about Vitamin D and just how important it is to everyone.

OK...I know this is long...I hope I have helped you in some way here. Hang in here with us....post often, ask questions...make comments and/or suggestions.

We understand how you feel...we have been there and done that. Things will get better....with time....trust me...there is something out there that will help you cope better.

Take care and good luck.


MiMi

Rach,

We are a very sensitive group. It is something that should be red flagged for the doctors. Start slow and low and build up....

That is great you were able to help your Mom, but a price can be paid for the effort. remember to pace.

In reading your note I was surprised to see low sugars and lack of energy with the steroids, I didn't know that your PMD had pulled them away......that being said if it was a mold exposure you WILL feel sick for a bit. Your immune system is busy fighting the exposure.

That high start of steroid can give you nausea as it increases acid production in the gut, but it also can give you a sense of wellness and energy....(didn't get that huh?)

I am sorry you are feeling so awful right now. I too have to be careful to expose my son in projects here as his dust allergy is tough and he will be sick after. It is the attic that is the spot for him...bad news.

I hope you get it better soon.......remember for us LESS is MORE. Start meds slow and when you are home to monitor side effects or allergies....some side effects pass after a short window and some it is your decision whether you want to tolerate them.

Like for me Cymbalta dried everything I own and gave me brain buzzes...Oooo.. So I said that is it, not worth the effort as I still had sizable pain. My savella is the bow on my box...a crumb, just the little 12.5 mg tablet. Other here take 50 twice a day. I can't I can only take 12.5mg......see, we are all different.

Good luck and hugs from me, Nancy B

Hi Dollbug! First let me thank you so much for all your kind info. So glad i made myself get on a site and reach out to others who understand. I love my family though i don't always get the support i need because they don't understand. All those vitamins sound great! Once we get paid i'm going to my local vitamin store. Though i have such i sensitive system...(feel like from fibro?) My doc wants me to start one thing at a time. She dose respect my system and want the best for me. She dose not want me on any meds because i'm so reactive to bad side effects. She also agreed supplements may help! Ahhh pacing....yes that is something i have to work on. I deff overdue lots of things and clean shop fast ect. I think its just because i wan't to get it done so i can sit down?!! I don't i'm working on it. I also have more issues too. And they need to be worked out. I know what you mean when they are under control i feel i can make a better routine for myself and body. All a work in progress. I'm 23 all these issues and not able to work i feel my life is not getting anywhere. But i know in time all will work out and i have to just keep my head up! I have a hard time with letting what people say or think get under my skin. Lost many friends because i simply can't do the things i used too. Even shopping and lunch can be rough. Or i cancel because i wake up feeling like death that day. And they don't understand. But I do have low D! I do take 2000 a day when i remember that is. Also in the midwest so sun is few in the winter. Makes me miss NC! I too lived there for a couple years while my husband was in the Marines. I see you live in NC!) Some days were deff too hott though. But it was nice. Again thanks so much for all your encouragement! If you don't mind we can email/keep in touch. My email is Rachaelg810@yahoo.com. Don't get on here as much but i'm starting too! Well have a blessed Sunday! Take care

Hi there! Yes pacing is hard for me but i'm learning i have too! I do have low blood sugar. But it hasn't got as low as it did after stopping steroids. I think my whole system has been in shock. They also made me very tired but wired if that makes sense. I'm just glad i'm off them but i do feel they messed me up! I have tried amitriptylne(NOT A GOOD MED FOR ME) cymbalta I was just prescribed that by my RM but way too expensive. I will not be taking. They way my system is i want to try mio facial PT and supplements. See how that works. I do feel the reaction was from dust or mold. But would that cause hives? Well i'm not going to be be in the basement anymore until its cleaned out i'm just helping her with stuff upstairs. Her neighbor is a mold guy so he is going to come check it out since we will be living here for a while. I just hope i can find something that will help me. Also once i see a specialist for another issue once that's all under control maybe i wont feel as miserable as i do all the time. Everyday weak, tired dizzy muscle pain and spasms. Along with my neck issues and blood sugar i feel a mess all the time. Very hard considering im 23 and have my whole life ahead of me i hope! I wan't nothing more to feel better and live again. Just having faith and staying strong! That's all you can do considering stress makes it worse i'm always stressed:/ Thanks for your response and advice i so appreciate it! God bless and HUGGS

Hello again Rachel.....OMG to be only 23 and dealing with the wrath of the dragon, aka FM....it is so important that you learn all you can about how to cope better....
please remember that anything and everything is a process with FM....and nothing is easy, or at least what I use to know as easy.

I am 60 years old, have 3 grown children and 3 wonderful grandchildren....been married 40 plus years...(to the same man also)....I have to add this....I was lucky to not find the wrath of the dragon until I was older...a lot older....and I am thankful, so very thankful for this.

I do think though that perhaps I was doomed in getting it...I use to hold down a fulltime job and also a parttime job as well...and now I am no longer able to work...so I guess I paid for trying to do so much when I was younger...this is why I caution you to learn all you can about dealing and coping with FM now.

I also want to tell you that vitamins and supplements are not all the same as well. I get my multi vitamin from walmart...Source One 50 ...a good brand...and as for supplements and vitamins from the vitamin store I use Source Naturals...(another good brand)....I also wanted to say this...you should also start out slow with the vitamins and supplements and only one at a time...to see what agrees with you or not...I would also suggest that you try Omegas as well...I take Salmon instead of Fish Oil...I did research and according to what I found this is better for us.

We, FMers, do understand what you are dealing with...most of us have been there, done that. We know what it is like to get up feeling worse than when we tried to sleep...I sleep in a recliner and have done so since 2005...(not by choice though)...you will find sometimes that you have to do what you have to do to cope better...it is the way of life for a lot of us.

You also need to remember that Stress and the wrath of the dragon are best friends...they thrive on each other...so try to limit your stress...you will find that it is better for both your mind and your body.

NC is a wonderful place to live, for the most part...it has been my home for a very long time....since I married...
we eloped and I left my homeplace in Alabama and never looked back. I was raised in a really small town...(out in the boonies)...which is now only a ghost town...nothing left but some old buildings and a military academy.

Taking a hot shower at night right before bedtime using lavender bath salts is a good way to relax your body so that you can sleep better....sleep is so very important for us FMers as well.

Also keeping a daily journal might help you figure out what causes the *extra pain* that we all have....this is a good way to also keep up with vitamins and supplements that you try and the foods you eat...just to see what you did right before a bad flair.

OK..be sure and check out the info under *tips* and *resources*...I am sure that you will find other good *tools and tips* there also.

Take care.


MiMi

Rach, are you doing any better? Have things calmed down any? You cannot depend on every day being better than the one before, but over a 3 or 4 day period, you should feel better than you did 4 days ago. If this isn't happening, something else is going on--not just a reaction to the prednisone.

Sometimes the things that bring you to the ER are scary. Then you wait and wait. When you finally see a doc, you're not at your most lucid. File this for next time. Maybe you'll be able to be more assertive then. (So speaks the lady who hasn't been to the ER since 2005. Easy for me to talk.)

Remember that as Jan said, you are in charge of your treatment. Believe it or not, my primary told me I'm her source for info on FM. The spoils of a 41 year war on pain.

The Fibromyalgia Network has some very good info for you. There are some very good books to read, too. My fav is The Fibromyalgia Helpbook by I Jon Russell and Jenny Fransen. This excellent book is due for a second edition but is still a great sourcebook.

Keep in touch, Rach.
Bette

Dollbug, the lavender in your bath sounds great, but don't you worry about secnts? I know some of the stuff my hubby of 45 years do a number on my sinuses and trigger migranes. I better stick to my sensitive skin Dove.

You have some great hints and helps. Don't you think we veterans of FM owe it to the newbies to help them as much as we can?

I've always been worse when the humidity rises. The past 3 years, I'm having trouble anytime the temp goes above 72 or so. I get light-headed, dizzy, full of fibrofog. Your summers must be BIG on both heat and humidity. Does the weather aggrivate things for you?

Hope you've dodged the severe weather in your part of the country today. We've just had rain which will turn to snow overnight in rural Western New York.

For days and days without flares.

BetteK