Does anyone else here have fibromyalgia?

[Lyric]

I'm in the midst of a really bad flare and I can hardly think around the pain. My pain is the worst around my shoulders, upper arms, and upper back, but it hurts in my hips and knees too. My son poked me in the shoulder the other day and I almost keeled over, the pain was so intense. :(

How do you cope? I wound up becoming a big-time fantasy literature buff because my coping method involves absolutely BURYING myself in books until the symptoms ease, and since that can take weeks, those 13-book-long fantasy series are perfect. I just started re-reading (for the millionth time) Robert Jordan's "Wheel of Time" series. It requires no critical thinking on my part, but the story is engaging enough that I can lose awareness of the world around me for hours at a time. Considering that Mr. Jordan had serious chronic health problems of his own before he died, I often wonder if these books did the same thing for *him* that they do for *me*.

George R. R. Martin is another of my "therapy writers", although I've been going slowly crazy for years, waiting to read the next part of the story. I also spend time reading and writing at DU, although it's easy to tell that I'm going through a major pain flare--it shows up in my writing as an increase in my level of despair, stress, and overreaction.

Is there someone else out there who goes through the same things? It's hard to live with this alone. I don't know anyone else with fibro IRL.

[KamaAina]

1. Auwe! Malama pono, E ko'u kaikuahine.

:loveya:

Sorry, only other person I know with that is on Big Island.

This is probably as good a time as any to point out that the fancy new medication they're trotting out for it is called "Lyrica". :-)

[Lyric]

2. I've tried it, but it didn't help me.

I didn't notice a single bit of difference. :(

[KamaAina]

3. Well, then, they need to change the name.

:P

Time for an orange tabby fix. I can't really think of anything else.

[lunatica]

4. Will a Fang Shway Zen cat at one with the universe help you feel a little better?

I'm sorry you're in so much pain

[Lyric]

7. That is an adorable kitty.

:loveya:

Thank you!

[siligut]

5. Have you tried supplementing with vitamin D?

Some research shows it helps fibro and some shows a deficiency of vit D can mimic fibro. So many of us are deficient too. I worked with people with diabetes and sometimes they had fibro too. I know it is just awful and when I worked with them, the medical community wasn't on the same page and some of these dear women, most are women, were treated rather callously.

I read paranormal porn, well, romance, but it can get kinda porny. True Blood got me started. When I need an escape, I go with JR Ward or Kresley Cole. :hug:

[Lyric]

6. Well, I take a multivitamin, I get a decent amount of sunshine and I drink fortified milk.

I think that's probably enough to prevent a deficiency, but I can ask my doctor to check it out.

[LiberalEsto]

8. I do

What helps me with the aches and pains is arnica gel. Arnica is a member of the daisy family and is traditionally used for bumps and bruises. It's used externally only; not taken internally or used on broken skin.

Here's a link: http://www.umm.edu/altmed/articles/arnica-000222.htm

[mentalsolstice]

9. Raises hand!

I was born with very mild cerebral palsy, and then diagnosed with fibro in 2003. AS a result, I'm now on SSDI. Before 2000, I was very active, could work a long day with the best of them, went for long walks, loved bike riding...you name it.

Most of my pain is in the hips, groin, shoulders, neck and elbows. Some days/weeks I'll wake up feeling like I have been dragged behind a pickup truck. I know all about the flares.

Then there is getting people close to you believing you're in pain. My husband has been pretty good about seeing when I'm having a flare, and quietly helping out. My parents are another story. The CP is still a big white elephant in the room for them, so they will not acknowledge the fibro. Add that in with the fact that my dad feels like SSDI is a scam...well, there you have it.

Flares suck. My doc took me down the Vitamin D route, and I was deficient. It does help to get into a normal range, but it's not a cure. You need to take Vit D3, it's more effective.

[Lyric]

10. Yes! The waking up thing--god yes, it's awful.

I tell Rhythm that it feels like someone worked me over with a baseball bat while I was asleep. The pain itself is the worst in my shoulders and upper arms, and the best I can do to describe it is that it feels like a huge, bone-deep bruise with a bad sunburn on top. All touch in that area hurts--poking, pushing, or even the light pressure from a fingertip brushing across it. When the doctor first diagnosed me, he did a test in which he poked at places from my neck down to my hips and I thought I was going to faint from the pain intensity. :(

I'll look into the D3. I'm willing to try anything at this point. This is just life-usurping.

[u4ic]

11. Yes

This winter has been utter hell for me due to the extreme cold (when getting to -20 was a heat wave), grey, huge amounts of snow...I sympathize.

A few things helped me tremendously over the years.

Getting the right sleep meds. I take a combination of two, one isn't available in the US. Getting lots of good quality sleep is essential. Studies have shown normal, healthy people who are deprived of REM and stage 4 sleep will get fibro symptoms. Some believe fibro is really a sleep disorder, though I think there's much more to it.

Going on a gluten, dairy and yeast free diet. I 'cheat' once in a while, but I can feel the pain and fatigue when I have gluten. If you need bread, a new one out called Udi's is fabulous - never tasted a GF bread so good. I am carbohydrate sensitive, so I limit my bread, etc. I also use shiritaki noodles rather than rice noodles. They're found in Chinese markets in the refrigerated section.

Certain supplements - yes, the vitamin D mentioned above (I get Carlson D3 2000 iu and pop 2 a day), COQ10, good quality fish oil, L-aceyl cysteine, B12 injections (I do these at home, my doctor showed me how - 1000 mcg/hydroxocobalamin daily) and acupuncture (I'm in Canada, so it was available to me through my physiotherapist, and because I'm on disability as well, it was free. That, getting the right sleep meds, the B12 and the GF diet helped the most. Not everyone benefits, but the people, including me, that respond well to it respond WELL). D-Ribose helps some, I found I got heart palpitations from it and stopped.

Magnesium is a must, people with fibro tend to be deficient. A cal/mag supplement isn't enough, get them separately and work up, slowly, till you're taking more mag than cal. Right now I'm 1:1 but I had to be at around 1.5mag to 1cal.

I will crash if I exercise hard, but some type of stretching and very light weight training (I just have my own weights at home) also help. But I listen to my body, if it starts to hurt a lot, I give it some time, and then go back to it again. Tai chi and qi gong (breathing, yoga can also be beneficial) also helps me.

Summer/sunshine/heat are a must, but that's hardly affordable for me 6 months of the year. I definitely feel better when it's hot and sunny out.

I like this site for resources, up to date on a lot of ongoing research: http://www.prohealth.com/fibromyalgia/index.cfm

You're definitely not alone. Gentle :hug:

[Flying Dream Blues]

12. Here is what helped me...

I used to describe waking up as feeling as if I'd been dragged behind a car all night. :) Awful, and made every day such a struggle.

What has helped me so much was getting gluten-free and having my latent food allergies tested by a company that does the Immunoprint blood test. I was allergic to so many foods that it turns out I almost certainly have leaky gut syndrome, which can cause one to have fibromyalgia symptoms.

Before I discovered all of that, I took a supplement by Metagenics called Fibroplex religiously for a few years that helped tremendously (though it took awhile before the effects were complete.) My chiropractor recommended it and all of their products are very high quality.

After a month or so, I wouldn't be without it. It was a lifesaver even if it is a bit expensive; it gave me so much relief.
Here's a link to the product's website:
http://www.metagenics.com/products/a-z-products-list/Fibroplex

I wish you all the best and hope you can get some relief soon.

:hug:

[grilled onions]

13. My Best Friend Has It

While I have had psoriatic arthritis 30 years before she found her diagnoses she felt very much alone. The multitude of doctors who found nothing,thought it in her head,thought menopause was crying out for attention. When she was finally diagnosed by a rheumatologist and was put on prednisone to head off the worst she went to me(knowing I was on prednisone) and it was just knowing some of what she had that I understood made our casual friendship into a bonding one. The best thing you can do is look at a local hospital or clinic that may have a support group or a once a year seminar. Once you find others(also look on line for fibro sites). You will read many comments just like your own. It's difficult to have such pain that is invisible to others. It's hard for them to understand that you can hurt in many places in any given day and the pain can escalate at any given moment. In this case misery loves company. I hope you find others to share your fears and experiences with.

[Lyric]

15. I have psoriatic arthritis too. Wow, I've only other met one other person who has it.

Mine isn't terribly bad yet; it's only just started. I have it in my finger joints and a little in my elbows. My left elbow won't fully extend anymore, and I have a hard time holding pens and pencils for writing.

[KamaAina]

17. Aw, why do you keep telling me this?

I'm gonna start hurting, too. :(

[haele]

18. Laz has it, as well as psoriatic arthritis -

and ancalosin spondylosis (spelling?). He developed it about 10/11 years ago. Mild fibromyalga apparently has been in his family before, but with the arthritis and the spondylosis, it's miserable for him.
He just deals with the day to day pain, and his doctor has him on a couple monthly injections to control the arthritis and the flare-ups.
Recent regular walking and losing weight really helped to improve his functionality - seven years of weight-gain and the depression from the constant pain nearly caused him to become perminantly chair-bound a couple years back. He'll never be back to what he was before he developed this, but at least he can slow down the progression.

The weight gain is something that needs to be kept under control in this sort of situation.

Haele

[ohheckyeah]

14. I was diagnosed

with fibromyalgia before it was called fibromyalgia about 30 years ago. How to cope? The best pain reliever I have found is my hot tub. I know they don't come cheap but it is seriously the best thing I've ever done for the fibro pain. I also have metal rods in my spine and it helps with that, too.

Don't allow yourself to get too tired or cold....both conditions make the pain worse. If you have access to medical marijuana you might give that a try as well. Also, DMSO. I use it on my muscles when they hurt and I can't go out to the hot tub because of wind and/or rain.

I've lived with this for a long time and sometimes it isn't easy but I don't like the alternative.

I hope you feel better soon! Take care.

[Lugnut]

16. My d-i-l has fibro.

Your symptoms sound very much like hers. Her major complaint is in the pain her upper back but it's not limited to just that. She also has thyroid issues and joint pain. To add insult to injury she and my son are raising two of their grandchildren, aged 6 and 4. It's a terrible situation and she feels very isolated. :hug:

[Lucinda]

19. Not fibro - but debilitating joint and muscle pain - so I can relate

I have no official diagnosis - we still don't know exactly why I have this pain. I take lyrica - vitamin d & b complex - hydroprophen and have started once weekly low dose chemo meds in an effort to battle the pain. It was getting to the point where I could barely walk before I started taking meds. We have tested for everything and nothing turns up. It was like someone turned on a switch last May. It started in one shoulder and kept moving throughout my body.

I do "reading therapy" as well. In the past, I had another type of chronic pain (from a bad surgery) and used my tub and the Harry Potter books to get through the day. Now I'm not strong enough to take a bath - so I'm without hot water therapy. Showers just don't work as well. :)

I'm sorry you are going through all of this. You are most definitely not alone.

[RagAss]

20. I'm not giving you advice...but here is what helped me....

10,000 iu of vitamin D3 daily....took it 3 months until my levels reached the point where the pain ceased in my neck, shoulders and legs....the level was 70ng. Still taking it daily(now 7,500 iu per day) and testing every 6 months. For me the level of 70ng was the magic number.