I thought we could have a thread like neurotalk does to check in and tell how we are doing day to day or week to week ect.

So how is everyone doing?

I'm in a pain flare unfortunately, not too bad yet but its pretty ouchy, i might go to our little hospital tonight if it gets any worse.

[AndyA]

I was having problems for 4 years, and my symptoms were identical to my sister's, who was diagnosed with Fibromyalgia. I managed to clear up 90% of it with meditation and relaxation techniques. My sister said that wouldn't work for everyone, and some of the causes are physical.

For me though, I know I'm constantly tensing and could literally feel the tension melting away one day when doing some relaxation. After a couple days my legs and ankles felt 100% improved. (I mean over a couple days I'd take time for a few mediation/relaxation "sessions."... I did this at home, by the way.)Then I "focused" on my arms, shoulders, finger, base of my thumb... that got better in about three days. It was kind of like a miracle cure, but since nobody believes in miracle cures, I guess I better avoid using that term. I'm not selling anything... there's plenty of info on the net about meditation. To me, it wasn't a miracle anyway, I know I tense a lot, and have trouble relaxing. So I wasn't at all surprised that all my pains, burning, stinging, "under the skin itching" was caused by the constant strain of being tense. Doctors said to exercise, but that often made it worse or didn't help at all. They never said to do the opposite, to just do nothing.

Unfortunately it takes practice to get really relaxed and to concentrate. I started kind of infrequently doing some types of relaxation exercises three years ago. After a while, I could fall asleep in five or ten minutes a lot of nights. But for all my life, it would take me an hour to fall asleep, I just didn't know that I could turn my mind "off." and didn't know that when I laid down to bed, I shouldn't just let my thoughts do whatever they wanted, I could actually control them. I was talking to my mother about a month ago, and she said, "yeah, when I go to bed, whenever I start thinking, I remind myself to stop. I've done that most of my life." Oh gee, thanks for telling me NOW, mom! Oh well, she didn't know. We tell kids to "go to bed." but not, "Go to bed and stop thinking."

I like this thread....

Major flare right now..... due to being upset lately.... so I kinda relaxed... watched TV... all day... cause.. it hurtsssssssssssss...... even my hair....

[AndyA]

Yeah, me too, actually. The last couple days my hands have been hurting and two fingers feel a bit like they've been burnt in a couple places. When I mentioned that it's not a "miracle" cure, I meant it. Because I'm still under a lot of stress, the fibromyalgia symptoms build up again if I don't keep meditating/relaxing every day. And what happened is after they cleared up good early last month, I started writing like crazy and using the computer more. I've noticed that really makes me tense up, I mean, it's not just they way I'm sitting, I feel more anxiety and stress from being on the computer, and when I'm on it and really into what I'm doing, I don't even think about how much I'm tensing. But anyway, of course since the pain and discomfort improved, I forget more about meditating and relaxing, so now I have a flare up. Half the time I meditate, instead of relaxing away the pain, I fall asleep pretty quick. so I have to start doing it in the morning, and add a couple more times in during the day.

I wonder if you can tell if fibro symptoms have physical causes or mental causes by how much better you feel when you wake up. Like even before I got the 90% relief, I'd always feel a lot better after waking up (if I managed to get a good night's sleep, and not too sleep deprived in general), and in the evening and at night my pains and discomforts would be the worst. I wonder if that's common for the people like me where the cause is for reasons of stress and not some physiological reason... Anybody have thoughts or speculation on that?

I feel "crappy"... no matter how much sleep I get... morning or night.... though a good night's sleep... gives me more energy to cope..

Does any one have any experience with foam toppers for beds... if they help... or not.... which ones are good???

I take alot of sleep meds.... but still wake up.. in pain... I think from laying.. in one position..too much...

Hi everyone! How is everyone doing today?

Originally Posted by freewill

I feel "crappy"... no matter how much sleep I get... morning or night.... though a good night's sleep... gives me more energy to cope..

Does any one have any experience with foam toppers for beds... if they help... or not.... which ones are good???

I take alot of sleep meds.... but still wake up.. in pain... I think from laying.. in one position..too much...

Im sorry your having a rough time free. I am the same way with the sleeping thing.

I dont have much experience but i hear the memory foam is good!

[(JD)]

Foam can be hot to sleep upon, so make sure you have more than a sheet between you and it. Yes, sleeping in one position, especially if it's the wrong position, can certainly get to you. Also, be careful of bedsores when lying in bed for long periods of time. (Pressure point sores etc.)

It's very difficult for pain patients to obtain RESTORATIVE sleep. Keep working at it, it's very important and you all know.

[skymonk]

Are you on any regular pain meds&do you have a Dr that specializes in the treatment of fibromyalgia? I see a rheumatologist&he's helped to a certain extent. My pain is only 50% controlled&my Dr seems to find this acceptable, but I don't&I can't afford to go to the ER when I have an especially bad day. I know someone else who has fibromyalgia that gets 2400mg of morphine&9 Percocets a day. That's way too much! I'm stuck w/the same pain med that I've been on since 1997-Vicodin. It's better than nothing, but not really helpful. Have you found any coping skills that work or a daily routine of how much activity you engage in or maybe even some excercises that help relieve the pain? I'd love to hear any suggestions that anyone may have.

This thread is really good...

How do you get a doctor to give you any pain relief? They... the physicans that I have seem... a family, an internist.. and a reumothologist - all agree on the diagnosis...

The reumothologist sent me back to my family MD.. and she told me to "tough" it out.. and nothing that can be done... except some physical therapy.. which I did.. didn't help.. racked up a big co-pay bill..

Internist tried Lycria - but with my psych. meds it really did not mix well... was well "wacky".. so...she had said.. do not come back for 3 months...even when I called and said it wasn't working...

I went in to see.. her a few months ago to get help.. got stung by a bee in her waiting room... swelled.. had a reaction..

she said... "it is best to not come back - except for regular physicals - because I was 'one of those people'" one with a mental illness - therefore.. perhaps more "prone" to feeling physical aliments - more aware of my pain than others... even though.. she does acknodlwedge the fibrom.. DX..

For that visit - she marked "migrane headache"... as DX.. and I do not have headaches..

I am allergic to all asprin products.. very severe...

My family MD did say to take tyleonal.... but... other than that be "tough"..

My Therapist... glosses over my pain... though it is hard to sometimes sit that long...in session...

so.. how go you guys get... any help??????

I live in a very conservative area...

[skymonk]

I know this tact that Dr's that just don't know how to treat your problem do. They always blame it on your mental illness. That is not fair&is a sign that they are a poor physician. Sometimes you have to put your foot down and DEMAND care. There are often physician's groups where you can report Dr's that are unwilling to help or are intentionally misdiagnosing because they don't know what to do. Listing your problem as migraines when you're not having headaches is pure&simply malpractice. You should NOT have to tough it out. Your Dr HAS to treat you for your pain-this is another thing you can report to your local Dr's agency(state or city) I would make a posting on Angie's list about your problem and the responses you've gotten-you'd at least be warning others with the same problem to not bother xepecting help from those Dr's. BE HONEST. You don't want to be sued! Have you confronted your Dr's & told them that you feel their treatment of you is malpractice? Dr's that attribute illnesses to your mental illness make my blood boil. I've been treated like that&it hurts to be labelled asa bad patient because you've got mental problems. Having mental problems doesn't mean you don't suffer from anything else! SPEAK UP! SQUEAK! Good luck!

Originally Posted by freewill

This thread is really good...

How do you get a doctor to give you any pain relief? They... the physicans that I have seem... a family, an internist.. and a reumothologist - all agree on the diagnosis...

The reumothologist sent me back to my family MD.. and she told me to "tough" it out.. and nothing that can be done... except some physical therapy.. which I did.. didn't help.. racked up a big co-pay bill..

Internist tried Lycria - but with my psych. meds it really did not mix well... was well "wacky".. so...she had said.. do not come back for 3 months...even when I called and said it wasn't working...

I went in to see.. her a few months ago to get help.. got stung by a bee in her waiting room... swelled.. had a reaction..

she said... "it is best to not come back - except for regular physicals - because I was 'one of those people'" one with a mental illness - therefore.. perhaps more "prone" to feeling physical aliments - more aware of my pain than others... even though.. she does acknodlwedge the fibrom.. DX..

For that visit - she marked "migrane headache"... as DX.. and I do not have headaches..

I am allergic to all asprin products.. very severe...

My family MD did say to take tyleonal.... but... other than that be "tough"..

My Therapist... glosses over my pain... though it is hard to sometimes sit that long...in session...

so.. how go you guys get... any help??????

I live in a very conservative area...

I'm agreeing with being in a conservative area - it sucks! I am having a very hard time finding help or even feeling like I am beleived with some of the local doctors.
I do take neurontin but its only moderately effective and I really think the doctor should be referring me to a pain specialist - yet he seems to think the neurontin should be the only thing tried.

I'm not doing too badly today. I hope everyone is having a good day!

[CedarS]

Achy, wobbly, really tired. But no headache - yay! Grateful to have lots of alone time today for rest and relaxation.

Cedar I'm sorry your feeling achy and tired - boy have i been there before. I am glad you have some time for yourself - that helps doesnt it?

[CedarS]

I'm doing reasonably well. Found some measure of peace and calm and as a result the pain I do have doesn't feel as miserable at the moment. I'm experiencing pain but not suffering as much.

for all of us going through fibromyalgia

Visiting my sweetheart, he has 4 wonderful cats, pet therapy is doing wonders!

I wish I wasn't as hazy and tired as I am but I'm okay.

ok... a ??????????

my MD's have said my swollen glands in my throat...they get... like.. I would say golf ball size... hard..

are from my firbrom... it does come on when I am in a major flare...

which.. I am in a major flare... plus my asthma is kicking up a storm..

she also said.. that the glands... located.. sort of in the back of my neck.. hard to explain.. swell for the same reason..

It is... majorly... OWIE...

when I was... about 12.. I had mumps... and it really feels like that... hurts....

what do you guys think???? do you think she is right???

Yeah, it could be. I remember hearing that that can happen with fibromyalgia. If they have ruled out anything else its probably just unfortunately another symptom.

Sidenote: My pain is flaring up again. creeping back on me slowly each days worse. Blech.

[CedarS]

Seasons and weather change and I sure feel it. Cold and damp now means I'm extra achy in the morning. Feels like time to hibernate in a cozy cave!

I'm practicing something that is helping mentally and emotionally - I remind myself that pain is pain, I may not be able to control it much, but I do have the ability to control suffering. Yeah I hurt but I can keep myself from making it bigger than it really is, I can do good self care and self soothing, I can distract myself, I can accept what I have and change what I can.

I've been reading up on Dialectical Behavior Therapy and I really like it. You can find good inspiration here: http://www.dbtselfhelp.com/ I'm applying what I can to my own life - fibromyalgia, migraines, chronic fatigue syndrome, ptsd. I have a good therapist too.

Working on rebuilding the habit of regular naps again. Laying down at 1 pm each day helps me feel calmer and better able to take good care of myself.

How is everyone else doing?

Cedar,

I'm doing semi ok - Im having some pain but it hasn't gotten too out of hand yet.

The DBT is really wonderful. I'm wondering if I might not bring that up in therapy with my Pdoc next time, and ask her to do it with me. If shes knowledgeable about it. I have borderline personality too so it would apparently be very helpful.

How is everyone else doing?

[CedarS]

Rainbowzz (and anyone else interested in DBT) - there is a really good book The Dialetical Behavior Therapy Skills Workbook : practical DBT exercises for learning mindfullness, interpersonal effectiveness, emotion regulation, and distress tolerance - by Matthew McKay and others. I got a copy through my library interlibrary loan and will eventually buy a copy.

The book is very well laid out. I think it can be very useful to use along with therapy, maybe even directly combined.

This morning I got out for a walk to a local restaurant, had coffee, then did some light grocery shopping. Now I'm back home and pretty much wiped out energy wise, but I'm determined to let that be okay, I'm grateful that I have the space and time to rest now.

Weather is changing, damper and colder, I sure am feeling it each morning. I think I need a jacuzzi right next to my bed so I can slide into it each morning!

[Brian37]

Hello, I'm Brian37's wife. I have both chronic fatigue syndrome and fibromyalgia. It started out as CFS when I was younger, but at some point, also developed FMS. I have people ask me if I feel bad everyday. My response is that even though I do have a few "good" days her and there, constant fatigue and muscle achiness is always there. Mentally, I have what I like to call "brain farts" because I feel really out of it and stupid as well. I'm 34 now. However, I wasn't dx until I was 21 yrs old, even then reluctantly by my doctor at the time who did not believe in it. The hardest part is that no one really understands. I don't "look" sick to other people, so they think everything's OK. I have a 3 1/2 yr old son who zaps alot of my energy. I feel guilty that he may be an only child because I'm not so sure I could handle another baby (sleep deprivation, postpartum depression, etc). Also, I noticed a post that said something about having hasimoto's thyroiditis. My GP said that is also what I have, but my endocrinolgist said I have a multi-nodular goiter. Either way, I have an underlying thyroid problem. Anyway, hope this helps. Therefore, it is possible to have other illnesses/conditions in addition to FMS. Approximately 70% of people who have CFS also have FMS and vice versa.

Hi Brian's wife!

Welcome to our thread. Wow you certainly have alot going on there, Im so sorry. I can relate with the CFS and the fibro, its a double whammy for sure.

(((hugs)))

[tampalama]

Hi everyone,

I'm new here, but I also have FM and CFS. I had a couple pretty bad flareups in the last month or so, but for the last couple weeks I'm doing quite well. I have been using a combination of amino acid and B-vitamins, which has helped a lot. I also discovered I was gluten-intolerant in April of 2007 and since I have been avoiding all traces of gluten (wheat, rye, barley, and oats), I have had far fewer bad flareups. Recently I started to read about Inflammation Factor ratings for foods and have been incorporating more anti-inflammatory foods and fewer inflammatory ones into my diet to create a balance that seems to be helping a lot. The nice thing about that is not having to completely give up something I like (my comfort foods) that might be inflammatory, but the feeling of control is in being aware of it and keeping the balance. No one thing is a cure-all, and I still have bad days, though way fewer than before, and I feel like I have a better sense of control over the whole situation than I used to.

I'm always trying to learn more ways to avoid taking medication, as I don't always react well to the side effects of many prescription drugs. I am in therapy, also, for depression, and I have learned a lot in the way of coping and being realistic in my expectations. For years, I was convinced that I would someday find just the right combination of foods, supplements, etc., and be able to bounce out of bed each day with the energy and strength and enthusiasm I had when I was 12. Finally, in a therapy session recently, I acknowledged, through tears, that "I'm not ever going to feel 12 again," and that did wonders for me! I found myself working through the next flareup and getting more things accomplished at home than I had in a long time, in spite of how much I was hurting. It was such a valuable turning point for me and made me feel very powerful (there's that "feeling in control" thing again).

So, basically, I guess my advice to anyone who asked my opinion would be "One day at a time, don't give up, and don't beat yourself up on your bad days - it'll only make it hurt worse."

tampa i dont have time too reply in full right now, but wanted to thank you for your addition and welcome you to the thread! So sorry you deal wit these issues as well. Many hugs if safe.

[tampalama]

Thank you so much for the very warm welcome. :-) I think I'm going to like it here.