[January]

I went to Physical Therapy and a brand new PT and a student PT practiced on me. I have been in pain all weekend. I missed going to a funeral that was important to my family. I haven't cleaned my house. They really flared the fibro and it didn't need any help. I'm sorry for the rant, but that's the state of affairs in the Jan household.

[cakeladie]

I just want to curl up in a ball and melt away. I had a seizure in the store yesterday arguing with the pharmacist then 2 more today

[Kiya]

((((((((((((((Everyone!!!))))))))))))))))

I'm exhausted, thanks, but I'll live.

[lizardlady]

Some times I feel badly because it seems all I do is come here to whine. On the other hand is it whining when I'm telling people who understand what's going on?

Yesterday was BAD. By late afternoon I was curled in a ball on the sofa fighting tears. I tried rubbing some liniment on my knees and elbows. That helped a little. This morning the pain is down to background noise, but I can tell from the way I feel it's going to get worse. *sigh*

edited to add...
Oh boy was I right about today. Full blown flare today. Am near tears again.

[LettinG0]

((((Christina)))))
((((Cake)))))
(((((Liz))))))
((((((Bubbles))))))
(((((January)))))
(((((Kiya))))))

Hugs to everyone. So sorry everyone is suffering so much. And, hope things ease up for everyone.

I'm hanging in there. Pain is background noise (I love that phrase, so I stole it ) Exhaustion not too extreme. Work is really busy...wearing me out....

Tried to sweep floors this weekend....ended up crawling to a chair....so that was all of the housework for me!

Love to you all!

[Skye Rose]

The first thing I got with memory foam was a pillow as a present. I have had cervical disc and headache problems since injury in 80"s-first good night sleep I had. So I invested in the temperpedic (it was in the mid 1990's so no others available then.) Took some getting use to-is very firm until your own body heat starts to warm it and your weight adjusts to you. A sleep study showed I toss and turn 17 times in an hour before this so I was willing to try anything. I slept better with less pain and the mattress keeps you at your body temp so your joints stay warmed. It mat not work for all but it helped me...and then of course finding sleep apnea and wearing a C-PAP helped me into REM sleep; and a antidepressant (after finding ambien worked) at bedtime kept my FMS (fibromyalgia syndrome) sleep dysfunction at bay as well.
Once these were resolved I had a lot less pain and fatigue with better memory too. Diagnosed 1995

[Kiya]

Liz, it's not whining - that's why this area exists; knowing our pain and fatigue and being with others who not only understand but are compassionate. it's a rare safe bubble in an uncaring world.

((((To all of you struggling!!!)))) Many hugs and lots of compassion!!!!! We are stronger together.

[~Christina]

Liz it's not whining at all... It is wonderful that we can all come here and just dump it all out. I seldom ever tell my husband about my Fibro... why? Because it upsets him that I having to deal with it all, he. feels. helpless. Of course If I am in a ball sobbing and trying to do it quietly he knows

If I could sew I would start making us all Super Hero capes"

Gentle hugs and understanding to all

[cakeladie]

Liz,

Like everyone has said this is a safe zone we don't judge you here. It's hard for others to understand what we or how we feel.

I managed to wipe down the ice box today and clean the bathrooms but I really needed to go to the store but there is no way I can leave the house . My husband came home and went for me. It makes me sad that a simple chore like going shopping I can't do. To make matters worse it's so hot today and yesterday.

Take care everyone

[cakeladie]

Wow, it is so hot and humid here which it normally not plus all these seizures I am so drained. So my hubby said I needed to cool off and the pool. I did not want to but I did and I am glad that I did . He got me a floatey toy and I garbed a book and the water cooled me right down but I am so tired I could sleep for a wee

[Kiya]

Oh Cake, do be careful take care of yourself!!!

[Bubbles&Buttercup]

I'm sorry you're all having a rough time!! Hope everyone gets a bit of a break from the pain soon!!

Okay so I have a question. I have my rheumatologist appointment in less than a week and I have no idea what to expect or if/when I'll be seeing him again so I really want to make sure I ask everything important!

I'm wondering what medication you're on for pain/sleep/wakefulness etc, and if you take vitamins or supplements and what else you find helpful? Like massage or physical therapy and stuff?
He's 2 hours away so I don't want to leave and realise I should have asked about something!!

Thank you.

[LettinG0]

Originally Posted by Bubbles&Buttercup

I'm sorry you're all having a rough time!! Hope everyone gets a bit of a break from the pain soon!!

Okay so I have a question. I have my rheumatologist appointment in less than a week and I have no idea what to expect or if/when I'll be seeing him again so I really want to make sure I ask everything important!

I'm wondering what medication you're on for pain/sleep/wakefulness etc, and if you take vitamins or supplements and what else you find helpful? Like massage or physical therapy and stuff?
He's 2 hours away so I don't want to leave and realise I should have asked about something!!

Thank you.

Bubbles:

Just wishing you good luck with your appointment and I hope you remember everything ---- write it all down!

As for myself, I am currently 'toughing" it all out with no medication. I do take a fish oil supplement and a B-complex supplement.

The absolute best "pain" medication I have ever taken is Savella. It worked marvelously for me (however, it is basically an anti-depressant so just bear that in mind).

Unfortunately, it only comes in brand name and I have been without insurance so I couldn't afford it. My current insurance only pays 50% of brand name drugs so I still can't afford it

[cakeladie]

Hey Bubbles, start writing down your questions and symptoms now so you do not forget anything while you are there.

I am on some pretty strong pain meds and muscle relaxers. The standard meds they usually use for fibro I can't take but you also have to remember I have lupus RA Pulmonary fibrous and some other dx so you can't really go off of me.

I do get shots in my joints that help with the pain but if you do not want to do pain meds hot rice packs help or I also use a relax wrap that can be heated.

Good luck and let us know what the doctor says.

We had an earthquake at 2 something this morning haven't really been able to sleep since at least today is cooler then yesterday

Hugs to all and rest when u can

[lizardlady]

Originally Posted by Bubbles&Buttercup

I'm sorry you're all having a rough time!! Hope everyone gets a bit of a break from the pain soon!!

Okay so I have a question. I have my rheumatologist appointment in less than a week and I have no idea what to expect or if/when I'll be seeing him again so I really want to make sure I ask everything important!

I'm wondering what medication you're on for pain/sleep/wakefulness etc, and if you take vitamins or supplements and what else you find helpful? Like massage or physical therapy and stuff?
He's 2 hours away so I don't want to leave and realise I should have asked about something!!

Thank you.

I'm not on any meds for fibro. I tried Lyrica and could not tolerate the side effects (made me high as a kite). I'm on three anti-depressants so can't take Savella.

My "treatment" is more learning to manage the pain.

Wrapping in a heated throw helps.
Soaking in a hot tub helps.
Sometime forcing myself to move around helps, some times it makes it worse.
Post-it notes and lists are my friends when the fog is bad.

Going to repeat what others said, write down everything you want to talk to the doctor about.

[lizardlady]

Thanks everyone for the comments about "whining." This is the only place I talk about what's going on with me. I do appreciate being able to let it out.

[January]

Hi Bubbles,
I take Nuerontin and Mobic. The nuerontin is a substitute for Lyrica. The mobic is a script size dose of advil. BioFreeze gel helps as does a warm shower. I use post-it notes everywhere to help me remember what to do. I agree with the others. Write down everything you need to ask and what we tell you here. Leave nothing to memory. I wish you the very best and I hope the Dr. has some great answers for you.

[Bubbles&Buttercup]

Thanks so much!

LettingGo- I know I can't go the anti depressant route because I've tried a couple previously for my mental health stuff and end up much much worse emotionally! I'm so sorry you found something helpful and can't afford to get it, I absolutely hate it and I hope it doesn't happen to me again!

I'd read about Lyrica and it seems sorta promising.

Cake- it's hard to know what can help when so many of us have coexisting physical or mental illnesses! I'm definitely writing everything down. I'm the queen of lists.

Liz- soaking in the bath is my best friend lately! It's so cold here.

Thanks again everyone!

[Kiya]

Originally Posted by Bubbles&Buttercup

I'm sorry you're all having a rough time!! Hope everyone gets a bit of a break from the pain soon!!

Okay so I have a question. I have my rheumatologist appointment in less than a week and I have no idea what to expect or if/when I'll be seeing him again so I really want to make sure I ask everything important!

I'm wondering what medication you're on for pain/sleep/wakefulness etc, and if you take vitamins or supplements and what else you find helpful? Like massage or physical therapy and stuff?
He's 2 hours away so I don't want to leave and realise I should have asked about something!!

Thank you.

I also tried Lyrica and neurotin and also had to get off them (and celexia)- but now I can't remember why (and it was only like 12 weeks ago).
I am on Trazodone for sleep - has titrated up over time from 50 to 150 now.
I try to keep up with vitamins - namely D, iron (anemic) and a good multi when I can afford it, as well as a pro-biotic.
A great acupuncturist is the best. (this coming from ME who is needle phobic). I've never felt so great as the beginning of this month when I had my first treatment with a REAL healer.
I am in pt.... not going great; I feel like I can't keep up with the exercises and there's so much pressure to keep up.
I KNOW I need to eat better and get moving.... I need to WANT to want that.
I've gained 20 lbs in the last 3 months.... not sure if it's the meds or that sickness that wiped me out or what. was really sad to see the scale today and then see a super skinny heart doc.
I'm with Liz - the best medicine is proper food, movement you can handle, correct sleep, and other natural remedies. (and acupuncture; did I mention acupuncture?)

[~Christina]

My pain is so bad I have been crying and sobbing since about 2 am.. Every single part of me is in horrible screaming pain.

I told my husband to lock up all my medications , car keys and guns. I don't trust myself when my pain is this high..

This pain has to back off .. I am losing my mind.

[Kiya]

Christina, isn't there some point when you go to ER for pain control???? Thinking of you and wishing you peace!!!!!

[Bubbles&Buttercup]

Christina- have you taken some meds to try to lessen the pain a bit? Maybe get your husband to control the meds and give them when you need them until you're feeling a bit better. I know the feeling of being unable to trust yourself when it's bad!

Kiya- My mum just gave me a bunch of different vitamins the other day because she knows I can't afford it and is all for the natural options. I've only ever had acupuncture once before and I couldn't stand not being able to move, I freaked out a bit.
I definitely need to eat better and try to do some exercise, it's effing hard though. Hope you get some motivation kicking in soon!

[Bubbles&Buttercup]

January- what's biofreeze gel?

[LettinG0]

Oh, Christina.....hoping you are some better.......gentle hugs......

[lizardlady]

Christina, here is a very gentle hug. What about Bubbles&Buttercup's idea of having your husband handle your meds? Hang in there, okay? On days like you are having I try to just hang on and ride it out. When the pain is that bad it's hard to remember that it will pass, eventually.