Fibromyalgia Moms? - Page 9

[Phoenix~Mama]

It's definitely the hormones that will help/or hurt it.

Fibromyalgia is majorily chemical... so anything messing with our chemicals/hormones makes it go crazy.


Back to being way tired... I really don't know how I'm pushing through each day anymore. Sometimes it's like I'm watching myself do things, in a sort of trance... really odd.

[frontierpsych]

I haven't gotten to read the whole thread but I was wondering if I could ask some questions...

I've had the symptoms of fibro for about 4 years now. I've been to dr's but I always get the same thing. "Here's some Motrin, call or come in when you need a refill." (Military docs-- if anyone else has dealt with them they've probably heard that too.)

Sometimes I have no energy to leave the house or I'm in too much pain and it irritates DH because he can't see what's wrong.

I've tried changing my diet, I've tried getting more rest, more exercise, etc. None of it works.

How do you get someone to understand? How do you find someone who doesn't dismiss you as depressed or a hypochondriac or a pain-pill addict (FWIW actually I HATE taking narcotics. They make me itch and nauseous.)

I feel like I've got nowhere to turn. I only recently (within the last 6 months or so) learned about fibromyalgia. I'm 99% positive that is what I have, but no one else I know has it and I've pretty much given up on seeing doctors for it.

[Phoenix~Mama]

Unfortunately with this illness it puts a lot of work on you. You need to research and educate yourself and go to the doctor armed with information. Don't back down or make them think they know better because they have a degree... It's YOUR body... you know something isn't right.

Chart your symptoms, keep a journal of daily symptoms/pain levels... bring all this to your doc appointments. Have you seen a rheumatologist? They seem to be more open to diagnosis than family docs...

The best way to fight the illness is to stay educated... stay positive and find the balance that works for you. Unfortunately since the illness is chemical, it differs from person to person, which also means the treatments will be just as varied. A diet that works for one person with fibro to keep their symptoms at bay may not work for you...

It took me about three years to find a decent balance... it's a lot about listening to your body and really getting to know it. If your body is telling you you need to rest... do it. If you feel you need extra water that day, or calcium... do it. Soaking in a warm bath helps a ton in the winter months... heating pads are Godsends...

I don't like pain meds myself... Docs like to over medicate. They had me on 10 pills at one time and I saw no difference... that's when I started doing my own research and got off everything. I keep most symptoms at bay by not overdoing it and listening to my body... tough days I take Aleve to take the edge off... the real bad days I still have a script for Ultram. I HATE that I have to resort to narcotics some days... but it is what it is.

A big part of defeating the illness is acceptance... It WILL change your lifestyle. You will need to plan things a little more than you ever used to. But you can do it. *hugs*

A great site to check out is butyoudontlooksick.com It's for a bunch of chronic illnesses and a lot of great information there. There is a forum dedicated to Fibromyalgia/Chronic Fatigue. The Spoon Theory is a must read for anyone with a chronic condition or anyone that deals with a person that has a chronic condition... it really puts things into perspective.

Also, feel free to PM me. I've battled this most of my life, and can certainly lend a sympathetic ear.

[Blooming]

You've gottan some good advice here.


The only thing I would add is to be gentle with yourself it takes us all diffrent amounts of time to adjust, to figure things out. It has been 2 and a half years for me and I'm still getting used to it. So is my family. Lots of hugs mama. Take one day at a time. You can do this!

[Ruthla]

I ended up learning about FMS because I was in a chatroom with somebody who had it, and I asked her about it. Then I did a ton of online research and realized that I had all the symptoms and it explained a LOT about what I'd been experiencing for years.

Then, at my next annual checkup, I told my dr I thought I had fibromyalgia- she referred me to a rheumatologist. The rheumatologist diagnosed me after about a 10 minute appointment (maybe it was less than that?) and prescribed drugs that barely touched the pain and made the brain fog worse- so I didn't go back to a rheumatologist for at least a year- and by then my insurance had changed and I saw a different one.

Unfortunately, the pain seems to have gotten worse since I was first diagnosed- but the good thing about that is there are meds that help.

The main "treatment" seems to be accepting my limits and pacing myself. I don't overschedule myself- if there's something important I want to do, I'll clear several days before and after so I'll have the energy to do it.

[Phoenix~Mama]

Originally Posted by Ruthla

The main "treatment" seems to be accepting my limits and pacing myself. I don't overschedule myself- if there's something important I want to do, I'll clear several days before and after so I'll have the energy to do it.

Precisely. Whenever I take a "vacation" where I need to fly... I know how much it wears me out so I make sure to schedule an extra day to the begining and end just for rest.


You will learn what each daily activity costs you in energy or points or spoons or marbles... there are lots of cute little things out there that people have come up with for "counting" their activity. Granted we all have our good and bad days... some days we are granted with more energy and find we can do more than usual... some days we may have less and find ourselves being discouraged that we didn't quite fit in what we had planned on...

That is another key point... Don't be discouraged or down on yourself if something has to wait til the next day. The world is not going to end if dinner dishes don't get done until the next morning. Letting go is a huge stride in dealing with the illness.

You may also find that you are able to sometimes "borrow" energy from the next day... it all comes at a cost of course. That's what I mean about planning though. I'm constantly thinking ahead and calculating out energy in my mind...

Learning to split up chores in little tasks to do throughout the day helps too. Learning that not everything needs to get done in that instant is key.

You know by the end of the day you may be thouroughly exhausted... so, maybe put together what dinner ingredients you can in the morning and keep it in the fridge... that way you just need to top it off or pop it in the oven at night.

There is nothing wrong with taking a 10 minute break to just sit in the middle of a task. Beleive it or not but that 10 minute rest may be the result in agonizing pain that sends you to bed early... or mostly bearable pain that allows you to get one more thing into the day.

It will be hard and a lot of pain to learn your boundaries and what you can push through, learning when that break is needed or when to stop... but it's worth it to learn the balance and lead a more "normal" life.

Also keep in mind... even after boundaries are learned... flare-ups happen. Don't get down on yourself and try not to drive yourself crazy because you did everything to your system and today you are in pain... it happens... take it easy and do what you are able to do, don't be hard on yourself about what you can't.


Be aware of everything... I know personally my illness is very weather oriented as well... when it's bitter cold or damp, I will be in more pain than usual... I plan accordingly and where looser, comfy clothes because I know I will feel swollen... just that small adjustment will make the day more bearable.

I've taught my DSD "quiet" time. If it's the end of the day and I feel like all my nerves are on edge and I'm about to jump out of my skin with one more noise... I tell her "okay... it's quite time now... let's practice our whispers". She rather likes the game actually. hehe


Sorry for the rambly answers, by the way... lol I can go on forever about fibro... it's a difficult thing for sure.

[umami_mommy]

:

[Brigianna]

Originally Posted by frontierpsych

I haven't gotten to read the whole thread but I was wondering if I could ask some questions...

I've had the symptoms of fibro for about 4 years now. I've been to dr's but I always get the same thing. "Here's some Motrin, call or come in when you need a refill." (Military docs-- if anyone else has dealt with them they've probably heard that too.)

Sometimes I have no energy to leave the house or I'm in too much pain and it irritates DH because he can't see what's wrong.

I've tried changing my diet, I've tried getting more rest, more exercise, etc. None of it works.

How do you get someone to understand? How do you find someone who doesn't dismiss you as depressed or a hypochondriac or a pain-pill addict (FWIW actually I HATE taking narcotics. They make me itch and nauseous.)

I feel like I've got nowhere to turn. I only recently (within the last 6 months or so) learned about fibromyalgia. I'm 99% positive that is what I have, but no one else I know has it and I've pretty much given up on seeing doctors for it.

Your story is so common among FMS sufferers. I hope you get some recognition soon.

[Blooming]

I just need to vent. I get so frustrated with the Fibro. My family came up to see us today. I was in such pain I had to ask them to go back to the hotel early.

All I wanted was a hot bath and now the furnance is broken.

I hate that Fibro takes so many things away from me. :

[supakitty]

big hugs to you, mama.

[Blooming]

Thanks supakitty. You know I love the quote in your siggy. Everytime I read it it reminds me to push forward.

[Ruthla]

Originally Posted by Blooming

I just need to vent. I get so frustrated with the Fibro. My family came up to see us today. I was in such pain I had to ask them to go back to the hotel early.

All I wanted was a hot bath and now the furnance is broken.

I hate that Fibro takes so many things away from me. :

[FishBounce]

Would anyone mind if I lurked in here?
I have been struggling with chronic pain since I was 16. I am now 26. For over a year in 2006, I tried to get help. No doc would listen to me and all I got was the run-around. Most days I feel like curling in a ball and weeping hysterically over this whole situ.
My aunt has fibro and I firmly believe I do too.
How did you guys get the help you needed? How did you convince a doc to listen?
BTW, it is so wonderfully encouraging to me to see that at least some people are getting help for this horrible condition.
Thanks for listening!

[supakitty]

FishBounce- You're absolutely 100% welcome here with us. -Laura

[Ruthla]

Sure you can lurk in here- or even post in here a lot!

I never bothered mentioning any of my symptoms to a dr at first because I thought they were just normal- it didn't occur to me that other people had more energy or less brain fog or anything like that. Then once I was in a chatroom with somebody who had FMS and I asked her about her condition, and realized I had many of the same symptoms. I did more online research about FMS, and at my next checkup I told my dr I suspected I had FMS and she referred me to a rhumatologist, who diagnosed me in my initial visit.

[FishBounce]

Thank you for the welcome.
I am at a loss as what to do anymore. Its to the point that I am afraid to go to any doc because I have been labled as drug-seeking.
Here's my story:
I finally got fed up with living this way in March '06. I had about a month of time where I could not even lift a dish to wash it, nevermind holding my kids. So I called my doc and made an appt. When I told her my symptoms, she said that basically my problem is that I'm fat and crazy (I do have mental health issues stemming from childhood abuse) and that if I would only stop being fat and crazy, I'd be just fine. I asked to see the other doc at the practice. This one believed me! She started me on Ultram and Flexeril, plus a course of physical therapy. Oh what a difference! She sent me to the UCONN rhuematology dept. At my appt there, as soon as they saw the meds I was on (anti-depressants, stuff for sleep and migraines) they ended the visit right then and there. They didn't even attempt to examine me. They said it was my mental health and to see my shrink. So frustrating! I still cry just remembering it. I went to my shrink who said it couldn't be my mental health as it was well under control, and to see my regular doc. I went back there and was told that the one I was seeing was let go. So basically, I was S.O.L. Since then, the few times I have gone to the doc, they completely dismiss me as a junkie. Doesn't matter that my last visit was for a sinus infection, KWIM? I am so afraid to look for a new doc. I hate being treated like this and feel helpless.
OK sorry for the whining. Its been a hard day today. Thanks again for listening. Much love to anyone going through this!

[supakitty]

Blergh, what a typical and awful story of healthcare people demoralizing a patient. All I can say to you as a fellow sufferer and a healthcare provider is that I'm sorry you were treated this way and I would encourage you to look for a different healthcare provider. I am so deeply disillusioned by the heathcare industry and I vow never to treat anyone the way you (and I) and so many others have been treated.

Hang in there, mama. We're here for you!

-Laura

PS. Is anyone here taking Lyrica?

[Jeanne D'Arc]

For those of you who have tried reducing chemicals ,allergens
and diet and have found no relief you may want to
consider a pathogenic cause to your misery.

I have tested positive for mycoplasma, candida, mold
and soon will be getting a special lyme test.

For me i know chemicals contribute so i stay away
from them, plus allergies. But if you do not address
a possible systemic infection you may never feel
any better.

[zonapellucida]

Originally Posted by supakitty

Blergh, what a typical and awful story of healthcare people demoralizing a patient. All I can say to you as a fellow sufferer and a healthcare provider is that I'm sorry you were treated this way and I would encourage you to look for a different healthcare provider. I am so deeply disillusioned by the heathcare industry and I vow never to treat anyone the way you (and I) and so many others have been treated.

Hang in there, mama. We're here for you!

-Laura

PS. Is anyone here taking Lyrica?

I started it and found it rather useless. Preggo now so I am taking NOTHING but hot baths with epsom salt and using trigger point therapy.


I wanted to add I had a positive Lymes test years ago and now the Dr here in FL is saying I am negative. The person who did the western blot is highly trustworthy so sometimes I don't know what my problem is.

[umami_mommy]

typing one handed here.... my ND put me on 1000 mg of calcium & magnesium (chelated), 1000 mg of vitamin D, B 50 complex and st. john's wort. and stuff for my thyroid and adrenals too... and i am feeling SO MUCH BETTER.

my constant aches and pain are just about gone. (been on SJW for about 2.5 months along with 4 g of fish oil a day too... the fish oil really helped too with the pain, i noticed that first.)