Fibromyalgia

[Lady Hefron]

Hi all...I don't know if there are any other ladies or gentlemen here that have this. I was just diagnosed with it about a month ago. Due to other issues, there are many painkillers I can't take.

So, my questions are...How do you handle the days where you are so exhausted and achey/sore/in pain that you can't get out of your own way? Does mild activity help?

I'm trying not to let it impact my life too much, although I guess it does occasionally. Really, its just nice to know that I'm not crazy or lazy. That it is a real thing.

[Holly]

Hi there..
I have friends and a mother with Fibro. Each one deals with it differently. I know that some ignore it. Some coddle it. I know that with my own auto immune disease there are days it hurts and there is nutten i can do about it.

Usually i take a bit of extra time.. and find small things to make it better.

As you know i am GF... and I know of a decent number of people who have Fibro and decided to be GF and it helped. Maybe some of those people will be along to talk..

HUGS

[Lady Hefron]

Hi there..
I have friends and a mother with Fibro. Each one deals with it differently. I know that some ignore it. Some coddle it. I know that with my own auto immune disease there are days it hurts and there is nutten i can do about it.

Usually i take a bit of extra time.. and find small things to make it better.

As you know i am GF... and I know of a decent number of people who have Fibro and decided to be GF and it helped. Maybe some of those people will be along to talk..

HUGS

I also have Celiac so I've been GF for about 3 years now.

[Lady Anisette]

I have RA and a lot of the same problems apply. It is hard to convey to some people that the exhaution and achyness is real....

I found that exercise or some form of movement on milder days can be helpful. You are stuck in a catch-22 though ~ you just don't feel good enough to go move or exercise, but if you do you will feel better. Not moving can make you feel worse, but you are too achey and tired to get started. I know, I'm there.....

My advice is to try to move or do gentle exercise like a walk if you can on not so bad days. On really crappy days take it easy. Read, talk to friends or family, watch a movie, rest. Make sure you have a good rheumatologist as well as a regular family doctor. Talk to a nutritionist. Sometimes bad turns can be triggered by a food sensitivity or allergy (I have several). Remember that your case is unique to you. What works for someone else may or may not work for you. And most importantly, find someone to talk with ~ either a support group (online or local) or a pyschologist or both. Friends can be very supportive but they don't always know exactly what you are feeling. Others in the same situation will and can offer tidbits of advice or just an understanding ear.

Good luck. PM me if you ever need to, either here or at NErennies.

[rosefaeries]

When I still had a bath tub, I would soak in a hot bath. Using bath salts (either lavender or patchouli) would help quite a bit. When I was still selling at Saturday Market, I sold a lot of the following bath salts to people who had chronic pain or fibro: lavender, patchouli, rosemary, pine & rosemary and the scent I called Hunter (pine, rosemary & patchouli).

During the winter, my electric mattress pad makes a big difference. But cold, especially damp cold, is a major trigger for me. (Though when we have had the dry cold go through I absolutely loved it. No pain whatsoever.)

I try to make sure that I get enough rest at night. I tend to be very protective of my sleep.

[Lady Hefron]

Thanks for the input. It has been rainy and cold in NH this week and I've just been sidelined by it. I have been going to work and coming home...thats it.

Rosefaires...the hot bath sounds good. I think I'm going to do that tonight.

Lady Anisette...I've been to a nutritionist, we found all my allergies and such. I have to stay consistent with my movement. I have a pedal set that I have been using for PT for my knees. I have found that I feel better if I can use it.

[Andreadoria]

I to have Fybro, It is evil...but my is as under control as I can get it.

My autoimmune thyroid causes it to flair at times. For me deep rem sleep seems to alleviate some of the cramping. I am a very poor sleeper...I have had to vary doses of meds to sleep with permission of my rheumatologist. Heat is my enemy I cramp with heat. I have also been frozen in place from cramps.

Between the thyroid crashing and causing me problem then the stress aggravates the fybro I never know what to do.

I was once extremely strong and very active. Lifting with 1 or 2 other people 500lbs. Now I must be careful I have limited muscle control and have been known to spontaneously release my hold on heavy objects when lifting...very upsetting for me. Had to stop doing live stage work...But the strength is there in bursts when needed ...but I pay for it later...

I tend to ignore the pain and keep going till I have to crash and sleep ...but I have no kids...makes it easier..and had a boss that cared 5 years ago ...but now I have been more careful. But each person has to learn to deal with it on their own intimate relationship with it.

When I was diagnosed and my rhumo Dr press all the trigger points....that night I was twitching for hours afterward...I found it funny..but that is me....He also told me that most people with the level of which I have are usually on opiates....nice....NOOOOOOO! not for me... I acknowledge the pain and put it on the back burner like a lot of eastern meditations..

James Cobern (sp) the in like Flint Actor had rheumatoid Arthritis bad he was very crippled with it. He used a lot of the meditation to deal with the pain. I even did that when I broke my leg from a 13 hr muscle cramp release in my leg while walking down stairs....I stepped on own leg ....I was so relieved to be rid of the muscle cramp I never felt the pain of the break.

You have to become friendly enemies with it ....learn what triggers it and what makes it happy to leave you alone.

but you are not alone.

[KissMeKate]

I have fibro as well.

I used to be incredibly strong, too. In fact, that was my downfall. After lifting a 300+ pound generator in and out of a truck 4-6 times a day with another female co-worker, my back finally gave out (turns out I had a spinal defect). Now I have a lifting restriction, but on good days, I can lift 30 pounds comfortably and 40 pounds if I'm really careful and not going far.

I have to agree with Anisette about exercise. I was diagnosed while going through physical therapy for the back injury. I would be improving and improving and then wham! I felt nearly crippled again. After 3 rounds of that, I was sent for diagnosis. I'm sure that doctor thought he was being helpful by writing scrips for all kinds of meds, including two for sleep (I'm also a poor sleeper). But I was a complete zombie until about 3:00 in the afternoon. Not good for being a good team member at work! In hindsight, I'm not exactly sure how I even got to work in the morning. ::tinfoil:

For me, drugs are out. I haven't tried to go gluten-free, but I have cut out most of the additives and preservatives from my diet, which was recommended by a woman I met who had been living with fibro for 30 years (before it was really known what it was, besides women's vapors). It's a pain, because I have to specialty shop and try to cook most of my own food. Fast food is out, most processed meats are out, snacks are out. But it helps a lot. My bad days are usually around my period (like today), when my cramps go through my whole body and I feel like a wreck. But I'm still able to get around and am productive at work.

You might have to try a lot of things until you find the system that works the best for you, but it's possible to get it and keep it under control. Good luck!

[RaevynCait]

I was diagnosed a little over 10 years ago. Fortunately, mine is still relatively mild, I think. I am grateful to the dr. who diagnosed me the first time he saw me!
I also have sleep apnea, which aggravates it sometimes.
For me, the keys are proper rest, and good stress management, as lack of sleep and major stress are my triggers. I've gotten VERY good at listening to my body and knowing when to call it quits and take a half day off or whatever to stop the flare from becoming a full on mess that will cost me multiple days of down time.
For sleep, when I moved recently, it was time to replace my mattress, and the one I bought has, instead of a pillow top, it has a memory foam top, attached, it's like 2 or 3 inches deep, and I sleep like a dream on it. Before I moved, on the old mattress I had a memory foam pad that I had bought at WalMart, and it was fine (actually, much better than the traditional egg crate toppers) My CPAP no longer works well for me as it's more of an annoyance and keeps me awake now. I did discover, however, that by elevating the head of my bed with bed risers, I sleep much better than I did, even when the CPAP worked for me. Over the years, I've tried various sleeping pills, prescription and non-prescription. Ambien (original) worked well, though I had to take it pretty much as a crawled into bed or I had all sorts of hallucinations. Ambien CR was not good for me, as it wore off very quickly. These days, what works best for me is generic ibuprofen PM.

As for staying awake, during the day, on weekdays, I take the generic version of Wellbutrin XR. Weekends, at least during Faire, I don't take them, mostly because I am so busy, I forget, and I generally have too much fun to get sleepy during the day!

Best advice I have is listen to your body

[KissMeKate]

Mine is considered to be rather mild, because I can function most days and put in a full day's work (8 hours). More than that or more physical labor than office work can cause flare-ups. When in Milwaukee, I had a massage therapist who specialized in fibro clients (she was awesome!) and now I rely on my acupuncturist. If I go about once a month, he can help me keep my body in check, otherwise he can get me back on my feet if I've had some bad days.

[Lady Hefron]

Thank you all. It's hard because I have stuff I really want to do and I'm a do everything at once person.

You have all given me great advice. It seems like what I have to do is just slow it down and pace myself better.

[Lady Anisette]

One other thing you might want to consider. There have been studies and my doctor fully believes in this ~~ pay attention to low pressure fronts moving through your area. In PT, we started keeping track of when some of our worst symptoms were and the weather. Sure enough, we all felt worse in the days preceding and during a low pressure front moving through. Studies have been done to show that some autoimmune diseases like fibro, RA, lupus, CREST and raynauds are greatly effected by these lows.

It was thought that the reason the southwest gave so many afflicted relief was due to the low humidity. A medical study showed that this is only partly true. The southwest has very few low pressure fronts, unlike the northeast, midwest and southeast where autoimmune patients had more complaints. Barametric pressure affects those with autoimmune disorders.

Sounds kind of wonky, but it is true for many of us.

[Phoenix McHeit]

I don't know if you saw this when it was first posted, but it's a good read anyway.
http://www.wench.org/forums/showthread.php?t=19972&highlight=Spoons

The 'spoons' theory. Blessings to you, dear.

[Dragonamant]

Barametric pressure affects those with autoimmune disorders.

Sounds kind of wonky, but it is true for many of us.

Here's a short article about what Lady Anisette said:

http://autoimmunedisease.suite101.com/blog.cfm/seasonal_stressors

[Lady Hefron]

I don't know if you saw this when it was first posted, but it's a good read anyway.
http://www.wench.org/forums/showthread.php?t=19972&highlight=Spoons

The 'spoons' theory. Blessings to you, dear.

That's it exactly...Thank you.

[Lady Hefron]

You know, when Lady Anisette told me about the IWG, I thought, OK...sounds like fun.

I never realized that I would become so involved with all of you, and I never thought I would find the support and friendship that I have. God has blessed me when I've most needed it.

[Holly]

A great book...
Living well with Autoimmune disease...

drat.. cant remember the author... I let anyone i know read it...

Oh and i have been told to avoid pine b/c it can aggrivate some AI symptoms...

[Lady Anisette]

Oh and i have been told to avoid pine b/c it can aggrivate some AI symptoms...

Tell me about it.... wish I had known that before I drank a bottle of Retsina which is made with pine resin. It was good, but boy did I pay for it. :-D

[Lady Anisette]

You know, when Lady Anisette told me about the IWG, I thought, OK...sounds like fun.

I never realized that I would become so involved with all of you, and I never thought I would find the support and friendship that I have. God has blessed me when I've most needed it.

::bighug::

[Andreadoria]

Glad your here too.

:grouphug:

[Andreadoria]

With my Fybro I have only been taking aspirin.

I weened myself off meds about 4 years ago...Cause I want to get pregnant...no luck... now major life curve ball. I had been taking 10mcgs of Amitryptline (sp) and allowed to alter doses depending on need....but now med free...I listen to my body when it says rest I rest.