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7th-Feb-2014 04:17 pm - Mattress Chat!
dead parrot
Hello fibro friends!

Since I'm overdue to get a new mattress anyway, I thought I'd ask and see if any of you have found a particular mattress has helped your pain and/or sleep. I've heard Sealy Tempurpedics are good but they're freaking expensive. I'm hoping to spend not too much but I'm open to costlier options if they help.

Thank you in advance!
29th-Jan-2014 10:27 am - Gluten free?
bit, avatar, silly
Forgive me if this topic has been brought up before, I was wondering how many people on here have tried the gluten-free diet? And if so--did it or does it work for you?

I tried it a couple of years ago and it didn't really work, but I think that is because I wasn't vigilant enough and I replaced too many wheat carbs with their sugary/over-processed substitutes. If I try it again this time, I will try to watch/limit sugary starches and increase vegetable/protein intakes (which is always good for health!)

What are your thoughts?

Gluten-free is it a fad or a legitimate treatment for fibromyalgia?
26th-Dec-2013 07:57 pm - changing meds
Bubba Gumps Mud Pie
I have been having rough winter and I am changing meds. I can't take lyrica. What works for you ? I am frustrated and need suggestions! Thanks!
26th-Dec-2013 03:05 pm - fibro pillow talk?
dead parrot
Greetings to all my fibro friends.

I am in the market for a new pillow in hopes that I will wake up less achy.

Any suggestions of what make of pillow might help are VERY appreciated.

Happy Holidays!
12th-Oct-2013 06:54 am(no subject)
I developed sciatic pain in both legs yesterday. I was also having a hard time getting enough air. Low blood pressure and circulatory issues (this caused a joint to die in my foot resulting in an eventual replacement in the early 90's) are part of my life. Diagnosed with FMS 2-1/2 years ago. IBS and TMJ are my close companions.

This morning I started a search for dual sciatica, as I had only thought it happened in one leg. Bilateral sciatica is a new term for me. Swell.

This is my question: I came across this - and this, and I wondered if anyone had any experiences or opinions on this concept.

The idea being psychosomatic. Mind-body connection. As a yoga teacher of 9 years, I firmly believe in the connection. I just never really followed this exact trail of information before.

The word psychosomtic is a stigma-word, but I don't buy into it. Just like I don't believe 'selfish' to be a bad thing. Selfish is a neutral word. We need to be moderately selfish so that we have more energy to be selfless.

Is my pain all in my head? Well, of course it is. Brain chemistry. I'm not going to get all defensive on that aspect. Am I suppressing emotional pain? Oh yeah, absolutely. The too-often trio of abuse for countless people - sexual/emotion/physical. Am I overly sensitive to life in general? Yup. My Momma always said "you're too sensitive". I always thought the world was 'too INsensitive'. I wish more people were sensitive.

I will probably get this book just to explore the idea. The mind IS very powerful. It is also tricky and sneaky. It is like dealing with a corporation - too many departments not knowing what the other is doing ;)

As always, life is one great big exploration ...

18th-Sep-2013 12:30 pm - Update from the pain doctor
I just realized that I posted on my private journal, but I forgot to post here. Last week I went to see a doctor who specializes in treating CFS and Fibromyalgia. Based on a two hour interview with me and reviewing my lab tests, he does not believe that I have fibromyalgia.

I'm bummed in that I would like a name for what I have, but I am also relieved because I don't have a chronic condition. Well, I do, but I am just not as sick as people with fibromyalgia are. He thinks I just suffer from chronic widespread pain and hypersomnia, without the other bits of fibro. It may or may not be attributed to depression.

This is from the letter he wrote to me after the appointment:

The problem you presented was of chronic widespread pain, or "CWP," for many years, but probably preceded by exhaustion and daytime sleepiness which goes back to at least your early teens. Both those symptoms, pain and exhaustion, evolved along with the stress of growing up in a family overshadowed by alcoholism, and your own depression that developed during your college years.

Various diagnoses for such a condition are easily ruled out by careful attention to your history and exam findings. This is not chronic mono, lyme disease, hypothyroidism, etc. I think "fibromyalgia" is a misleading label for it, because your condition lacks some of fibromyalgia's hallmark features of "axial pain," extreme morning sluggishness and malaise, "brain fog," prolonged exhaustion after minor exertion, and altered daily energy rhythm. Moreover, your widespread tenderness to pressue, measured by a dolorimeter, is quite minor. Similar considerations make Chronic Fatigue Syndrome an unhelpful label for your condition.

I think you most likely have a constitutional need for more sleep than most people, hence have reduced reserves of energy during the day. This may be interwoven with your tendency to depression: they often go together. The CWP follows from this, as poor sleep from any cause quickly produces widespread pain. Such a condition is not illuminated by sleep studies, like the one you had. You have had the other usual lab test and these have been unfruitful except possibly the vitamin D test (see below). I do not think that further lab tests will be helpful.

(Although I do feel like I have brain fog and a few other things, but again, not as bad as they could be). He issued me a list of recommendations and sent me back to my doctor. He says he doesn't need to see me.

I'm still processing what this means for me long term. Without an actual label of anything beyond: pain, fatigue and depression, I feel like it will be harder for people to take me seriously, especially medical providers and insurance companies. I also wonder if this could be the onus I need to leave my job and try the work at home part time like I have been thinking about for a while now. His first recommendation for me was:

The most obvious response would be to seek a job which would allow you to sleep longer hours, and to set your own work schedule (as you may function best with a wake-up time that doesn't fit with usual office hours). Work that's part time, and/or is mainly from home, might do this. This is of course a gamble: it may help or it may not. But it should be a serious consideration, especially if you have other reasons for considering a job change.

He also recommended getting more exercise, preferably swimming, and trying other supplements or medications, with the caveat that apart from exercise, none of them work for everyone and that I should only continue on a regime if it is helping.

So it is what it is! If anyone is in NC and would like his name and contact info, I'd be happy to share.
2nd-Sep-2013 07:08 am(no subject)
I just read a disturbing article. The site was posted on Natural Living.

Once ingested, fluoride compounds attack the structural integrity of our insides," says Shane Ellison, author, chemist, and founder of "Collagen, a web-like network connecting our skeletal system to muscles, is torn apart by fluoride. We feel it as joint stiffness, ligament damage, and aching bones.

Has anyone else seen information like this before?

Add on: Thank you for all the feedback and perspective. I looked more on the site and it really is rather .... extreme. I did find something else, though. Brushing teeth with coconut oil. Leaving this 'now-questionable-site' I found other sites supporting the coconut oil for teeth concept.

There is often truth found even in the most outlandish claims, but you really do have to engage in deeper research. I usually seek other sources, but I got hooked by the 'Natural News' and the 'science' aspect. And that it was posted on the Natural Living in Livejounal.

Which is why I asked here ... I appreciate the blunt and open honesty of this forum.

Thank you again ^_^
28th-Aug-2013 11:21 am - So tired of being neurotic...
get me my chocolate
Just thought I'd post to express frustration at myself, or rather my body and my mind, because they are driving me nuts....  I have Aspergers, and sensory issues, and I've never been sure if my muscle aches/issues are down to hypersensitivities, (water trickling down my face is almost unbearable, etc) being able to feel too much, or whether I have some fibro related trouble too. If I change my exercise, or start something new, I can get a feverish kickback from it, and all my joints get sore. I started a new job back in February which involved me walking and exercising more, commuting, as opposed to getting in the car and driving. My body hurt!
These past eighteen months I have had three unrelated health issues, each time I have got neurotic about them, and it's all I can think about. It's like tunnel vision.  This probably worsens the symptoms in a psychosomatic way.  .
I also wonder if at times it turns into a kind of a self-sabotage too, stopping me from doing stuff....   I have had singing lessons these past six months, which were very nerve-wracking at first, but now I enjoy them and my confidence has grown a lot. I've always loved singing, which drove me to having lessons, but these past months I probably overdid it a bit from trying too much, tired out muscles and did not allow them to recover fully. I had a throat infection/bug a month after I started singing, (Perhaps even Strep - though a doctor checked me out and wasn't certain. Whatever it was it lasted about 5 weeks and I was totally wiped out, laying in bed straight after work every evening, or having days off work...) My colleague came down with the bug too, so that wasn't just a unique thing to me.      More recently I've had a sinus infection - maybe bought on by all the antihistimines / beclometasone spray I had during June/July to ward off the worst of hayfever - the spray in particular totally dried my nose out... in retrospect it wasn't wise to keep singing at the same time... :o/
I have hardly been able to sing these past six weeks now. My neck has been feeling hot and feverish to the touch on and off these past few months. Muscles or infection now...I have no idea.  It still feels kind of hypersensitive, and the lightest brushing of anything against it - hair, fabric, anything is felt.  When a doctor takes my temperature in my ear, body temperature is normal...  I was finally prescribed a course of antibiotics (Doxycycline) last week for a suspected sinus infection, which made my head feel like it was going to implode for the first 2 days, but then I felt a bit better near the end of the course. Now I'm off the meds my neck is a little better, but still sensitive to touch, and my throat muscles still actually get hot if I talk a lot, and my muscles get tired/ these past few days I have been trying to talk as little as possible, which is making me feel down and kind of more neurotic....
Le sigh. Heck...illness is a fact of life, I wish I could just stop worrying so much and switch my focus to other things....!! Above all, I just want to sing again...  :(

26th-Aug-2013 10:35 am - Weening off of Cymbalta and Doctors
kindred, mail, mailbox
I had my annual physical last week. My doctor is still dubious about diagnosing me with fibromyalgia, yet she gave me her blessing to see a pain specialist in the area. My doctor is convinced that I am just depressed and have a vitamin D deficiency (levels around 22 IIRC). She took blood for several tests and I should get the results by the end of the week or next.

It's funny though because when she was giving me a physical exam on my abdomen (to check my internal organs) I winced and and sucked my teeth when she was touching me. She asked me if it hurt and I said it was tender. She asked why it was tender and I said I was always tender. She said I shouldn't be tender. Um, I know that! I am here to see you because it is not normal...MY BODY HURTS. A little lightbulb went off in her head and she started poking me in some other tender points. I winced and told her it hurt. She said those were trigger points that are common with people with fibromyalgia. I don't know why she was so surprised, she should have checked me for tender trigger points a long time ago. It made me feel like she didn't believe me. And even after all of that she was still unwilling to consider a diagnosis.

So I am going to see a pain specialist who has great reviews and my doctor knows of him and trusts him because he has other patients who see her. The only thing is that he doesn't take insurance and my deductible is pretty high so it will cost a pretty penny. It is worth it if he will take me seriously. He says that our area has a high concentration of doctors who don't believe in fibromyalgia because there are a couple of prominent teachers in the area medical schools who don't believe in it and they influence all of the students that come through the ranks. I know my doctor went to one of these schools. New pain doc also says that the doctors are retired now and so we should start to see this old doctrine fading away. Only time will tell.

Anyway, another thing we talked about is weening off of Cymbalta because it doesn't do a thing for my body pain. It helped initially, but hasn't for awhile. I've been on it about a year and half. So she gave me instructions on how to ween and said it takes about a month. Has anyone done this before. How sick should I expect to be? I had a hard time getting off of Celexa, but if my missed Cymbalata doses are any indication, I may be very sick. She says I should be completely off of Cymbalta before seeing pain specialist, so I know where my actual pain level really is. She did not prescribe another SSRI for the time being.

Health care is such a mess in this country...
11th-Aug-2013 01:15 am - Low-dose naltrexone?
benson and stabler
Has anyone tried low-dose naltrexone? My doctor just prescribed it for me as sort of a last resort, since Cymbalta and Lyrica haven't done a thing. I'm on 3mg/day and so far haven't felt a difference, but I'm really interested in hearing about other people's experiences.
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