Anyone else dealing with fibromyalgia?

[millefleur]

I've had fibromyalgia for four years now. I don't see much talk of it here, though I could be missing something .

Anyone else out there?

How long have you had it?

How are you treating it?

I'd love to chat!

[tireesix]

I have been dealing with it since my early teens, I am now 29. I have EDS and arthritis to go a long with it.

At first I could cope with it, I didn't need much to help with pain relief, things keep getting worse though. I am now on Oxycodone, Tramadol, sleeping tablets, ibuprofen and paracetamol (some of it is to help with the EDS and arthritis.

I have tried gabapentin, pregabalin, duloxetine, other antidepressants (tricyclics and SSRIs as well as mirapexin. I have reacted to them all and the most recent one I tried (mirapexin) made me shoot up from 9 1/2 stone to well over 10 stone in a couple of weeks, I can't afford to gain weight because of the EDS.

I have tried physio, chiro, osteopath, swimming, massage etc but I either get no relief or I can't afford to continue especially as the only relief I get is minimal. The worst one of all was swimming, I would end up in so much pain after because the temp of the pool was always too cold lolol.

I am not so bad fatigue wise at the moment, in fact, gone to far the other way it would seem, I can't sleep, even with sleeping tablets, other wise I am sleeping 14-16 hours a day

I am just so tired and sore and even the pain relief I am taking doesn't help much, it does take the edge off though.

Thing is, I was only diagnosed last November, before then it was classed as being all in my head and then it was 'suspected fibro' until I finally said 'I just want to know whether I have it or not' and a good doctor referred me to get properly checked out.

They say its not crippling and not progressive, but I have been getting worse and worse, I use a walking stick now, I am unable to work, I want to to but the Doctors will not let me and even if I tried too, I simply wouldn't be a good employee, a lot of the time just breathing is exhausting enough.

I sound kinda down huh????

In spite of the above, I am doing kinda ok, I am happy, have a laugh etc. I have lost all my friends because of the damn illness but I am making new ones at the local fibro group.

I suspect my 4 year old has fibro as well, she has some of the classic signs, fibro fog, sensitivity to noise, light etc, IBS, headaches, wide spread pain...... That kinda sucks but we shall get there in the end, wherever there is!!!!!!!!!

What do you do with yourself?

[blessedwithboys]

FM mama here. i use amitriptyline for pain and insomnia. nothing helps the brain fog. i've been off my meds for months now bc of not having a job. even though the Rx is onyl $4/mo, it costs an arm and leg to see the dr to get the Rx. the pain is so bad today, i feel like my bones are on fire burning me from the inside out.

looking back, i can see signs of FM in early childhood, but i wasnt debilitated until my 20's. i was officially dx about 5 yrs ago. i see signs in my 15yo ds. he's been having lots of pain and fatigue lately. school ends this week and i'm going to give him a very restful summer and if it doesnt improve by fall i'm going to really pursue his dr to try amitriptyline for a few months to see if it helps.

[Casha'sMommy]

No FM here but I do have autoimmune disease, many similar symptoms. I too had hoped to find some peers here but haven't had much luck.

s

[earthmama369]

Originally Posted by tireesix

some of the classic signs, fibro fog, sensitivity to noise, light etc, IBS, headaches, wide spread pain

I'm in the process of being evaluated for a number of possibilities, and fibro is one of them. The above describes my symptoms pretty well. My "working diagnoses" right now are IBS and myositis.

I'll be watching this thread with interest to see if it pulls together some questions I have about how my body is (or, more to the point, isn't) working.

[pianojazzgirl]

I have a good friend with FM. It angers me to no end that so many people suffering from FM are brushed off by drs saying it's all in their head (this is what happened to my friend for years and years).

My friend is also allergic or sensitive to a lot of foods, with anaphalactic (sp?) reactions to nuts and seafood, as well as having a lot of environmental allergies. I'm curious if anyone knows if there's any connection between FM and allergies?

I also know that she suffers from a lot of anxiety (a lot of this around food danger), and has (strangely?) found relief from FM pain through counseling for her anxiety/anger issues.

Anyway, just wanted to send out hugs to all the FM mamas.

[tireesix]

Originally Posted by earthmama369

I'm in the process of being evaluated for a number of possibilities, and fibro is one of them. The above describes my symptoms pretty well. My "working diagnoses" right now are IBS and myositis.

I'll be watching this thread with interest to see if it pulls together some questions I have about how my body is (or, more to the point, isn't) working.

Yeah, there is other stuff that goes with it as well, over active and sore bladder, vulval pain disorders, vision issues and the list goes on.......... Never feeling refreshed when you wake up, sleeping issues (insomnia, sleeping too much not enough, tender points, trigger points, burning skin, restless legs, pins and needles, numbness and pins and needles in arms and legs.......

http://chronicfatigue.about.com/od/w...bromyalgia.htm is quite good!!!!

[jeninejessica]

No FM so far, but I've been dealing with chronic fatigue since 2006. I was very lucky to have a doctor that brought it up to ME as a possible 'diagnosis' rather than me having to bring it up to her. It made me feel very validated... like it wasn't just me trying to pass this off as CF-- that it actually appeared that way to someone else.

I'm doing much much better than I was. Spring of 2006 it hit me absolutely out of nowhere, I went from being fine, to sleeping 12 hours a day, but yet... having trouble falling asleep at night. I needed naps, I would be out somewhere and then bam, it would hit me, and DH would be like "We need to go home, don't we? Like... now" From full speed ahead, to barely being able to walk myself to the car, in a matter of minutes. It was horrific. I was in the process of dropping out of school, and I'm fairly sure if I hadn't I would have failed out.

I've tried anti-depressants, and totally understand now why people say they increase the risk of suicide in some people. I felt like I was crawling out of my skin. Tried sleeping pills, but although they made me fall asleep right away, I didn't feel any more rested wheN i woke up, rendering them useless.

I've been "better" now for about a year and a half. I don't feel fatigued all the time, and I go weeks, sometimes even months without really feeling any symptoms. I still have some all over body ache, but it feels normal now, you know? And I still sleep more than most people, about 10 hours feels 'good' to me, but at least when I'm awake, I'm awake, not just staring into space, unable to focus my eyes like I was. I moreso now get 'spells' where I'll be fine for weeks, but then one day I'll be out grocery shopping, and literally have to walk away from my cart, and go sit in the car, not even able to drive home yet, because I'm all of a sudden so exhausted I can't see straight, or even form words. My biggest lingering symptom on a day to day basis is probably the frustration of having a word or a concept in my head, and not being able to force my brain to form the words. I'll be talking to my husband going "Can you grab the... the.... the... uhh sorry. I can't remember..." and I'll end up having to point because I'm sitting there going "ok, it's the round thing, that I drink out of... but i can't remember what it's called.

I'm not a mama yet, and honestly, I'm scared about what's going to happen when that comes. I'm at a good place now, and I forget sometimes what it was like when it was bad, and I'm nervous about being like that with kids. We all want to be that mom in the commercials and the movies you know, with tons of energy and ability. It's hard to realize that might not be reality.

[jeninejessica]

I'm sure most of you have stumbled across it, but if you haven't, "The Spoon Theory" describes it all so well. I've printed it and given it to several people in my life. It's hard to describe to people what we go through. When I read through the butyoudontlooksick forums the first time, I literally sat in tears, thinking "wow, these people know how I feel. The way she described it is exactly what it's like..."
http://www.butyoudontlooksick.com/ar...e-miserandino/

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

[Arianwen1174]

We're definitely here! I was dx'ed in 2001 but have had symptoms of fibro as long as I can remember, probably as early as kindergarten. Yuck. I'm in a flare right now, oh joy. Right now we are casually TTC so I'm being careful about meds and it sucks. But after being part of a thread about meds in pregnancy, I feel better about knowing I have to be able to function.

Big hugs to you all!

Originally Posted by tireesix

I sound kinda down huh????

It's so easy to be down about it, with good reason!

Originally Posted by blessedwithboys

FM mama here. i use amitriptyline for pain and insomnia. nothing helps the brain fog. i've been off my meds for months now bc of not having a job. even though the Rx is onyl $4/mo, it costs an arm and leg to see the dr to get the Rx. the pain is so bad today, i feel like my bones are on fire burning me from the inside out.

I'm so sorry you can't get your meds right now! Sounds like your doc won't just refill the order?

Originally Posted by pianojazzgirl

My friend is also allergic or sensitive to a lot of foods, with anaphalactic (sp?) reactions to nuts and seafood, as well as having a lot of environmental allergies. I'm curious if anyone knows if there's any connection between FM and allergies?

I can't tell you if there's a documented connection but I know I'm not the only one with lots of sensitivities, which are increasing as time goes on.

Originally Posted by jeninejessica

I'm sure most of you have stumbled across it, but if you haven't, "The Spoon Theory" describes it all so well. I've printed it and given it to several people in my life. It's hard to describe to people what we go through. When I read through the butyoudontlooksick forums the first time, I literally sat in tears, thinking "wow, these people know how I feel. The way she described it is exactly what it's like..."
http://www.butyoudontlooksick.com/ar...e-miserandino/

I LOVE the spoon theory! Thanks for reminding me about it, I want to post it on Facebook. It's so true.

Anyone care to share their tips for getting things done around the house and otherwise? It definitely helps me to rest between tasks. I do try to get several things done at a time when I can but know when to take a break. Stooping can be really hard for me so I have DH put the laundry in the the front loader in our complex laundry room, but I almost always hang it to dry. I'm still working on taking pain medicine as often as I need it, especially while TTC, but I try to remember how much it helps me to function.

[KMK_Mama]

It's one of the things I have been told I "probably" have, but have never been formally diagnosed. My symptoms did improve a great deal when I found out I was severely allergic to milk and I went dairy free 2 years ago. However I have had a constant headache for 4 years now. I'm now looking into Chiari Malformation as a possibility and I just read an article about the two having similar symptoms.

[tireesix]

Originally Posted by Arianwen1174

It's so easy to be down about it, with good reason!

Thing is, I seem down but really I am pretty good!!!!! I am applying to go to college and try and salvage some sort of life before its too late (I know that sounds melodramatic lol its just that the fibro and ehler danlos of robbed me of so much, doctors won't let me work, employers will not employ me and its not like its a disability you can work around really, especially if you have severe FMS, I don't know when I am going to be awake, when my brain is going to function etc etc).

If I go to college though, thats only 3 days a week and not long days and I can take days off if necessary, I can get funding for special equipment etc, I get extended time for assignments and everything so there is a chance I might be able to work through it (fingers crossed, I am hoping the college is willing to risk it). I am just tired of not being able to afford a car or a holiday or a nice home etc etc and its heartbreaking always telling my kids they can't have x, y and z because we are skint.

My kids are good kids, just small things make them happy, all they want at the moment is a gold fish. They are so different from my step son who has been raised differently, if wears jeans apparently we have to buy him the £70 jeans, only the expensive trainers will do (although that said we do fork out for GOOD foot wear mainly because my DDs have inherited my problems so good foot wear is necessary and we believe that even for normal 'healthy' people). My daughters are just happy to have something, my ex friends at the childrens group were always stunned at how my kids were happy to just sit on a hill with me and have a drink I bought for them, they didn't demand anything more and were simply content. So I feel my kids do deserve something more because they have been so good in site of me being fairly crap cos I can't afford jack and rarely have the energy to even play with them etc.

Jeez, sounding down again, I think mainly, my current problems are a) I am in the longest, most horrific flare I have ever had, normally its 3 months flare up to 8 weeks with fewer and milder symptoms and then about 3 months down again, at the moment, I have been down and out since November last year and not improving, just gradually getting worse, so I am kinda fed up and b) now I have been officially diagnosed I can talk about it without people getting weird with me unfortunately, I lost all my friends over the years so have pretty much no one to talk to (although I have started going to a fibro group).

The illness is just so isolating. I dunno.

All that said and done, there is a HUGE positive to me being sick (and the DH being sick too). We get to spend every waking hour with our kids. Its going to sound kinda sad but we are with them every day, they haven't been anywhere without else and we haven't been anywhere without them, for the first time I have a real close nit family and the kids are really out going and social as well so its not totally unhealthy lol. We have a really good time together and its been wonderful for my DH to be able to watch them grow and to be able to be there, so many Dads miss out (children too) and I am glad, kinda, that we ended up so sick we get to spend all our time with our kids lolol!!!!! A kinda twisted blessing huh!

[JaneS]

Have you had your CRP (inflammation) tested?

Food allergies not traditional IgE but IgG too, the "intolerances" can all cause FM sx most especially IBS.

I wonder if food *chemical* intolerance is a factor too: salicylate sensitivity especially
www.plantpoisonsandrottenstuff.com but as the diet may offer relief the true cause is that this is a deficiency in nutrients to process the food chemicals.

Look into methylation supplements: high magnesium intake including epsom salts baths and topical magnesium oil/gel, sublingual methyl B12, methyl folate.

[JaneS]

Originally Posted by tireesix

Yeah, there is other stuff that goes with it as well, over active and sore bladder, vulval pain disorders

With these sx I was dx with Interstitial Cystitis, and over the years I stumbled upon it being food chemical intolerance, which is not known as no one is looking for it. The so called "IC Diet" is low in food chemicals.

Never feeling refreshed when you wake up, sleeping issues (insomnia, sleeping too much not enough, tender points, trigger points, burning skin, restless legs,

This is low magnesium.

pins and needles, numbness and pins and needles in arms and legs.......

This is low B12, I would do Jarrow methyl B12 5000 mcg daily to see if improves.

B12 blood tests are not really helpful. If you are low on the standard blood test that means you are seriously low. Testing the blood doesn't really tell you what is going on in your cells, pretty much the case with most standard blood tests (calcium, magnesium, etc). The body takes from itself to keep the blood ranges normal or else real problems such as stroke would ensue. That is why you could have osteoporosis and normal calcium blood levels.

[QueeTheBean]

I was diagnosed several years ago, after suffering from intense pain and fatigue. Honestly, I think the doctors just gave me the diagnosis but think it is all in my head. I take a low dose of trazodone to help with sleep and a low dose of flexeril to help with the pain. I am a bit paranoid about the medical community in general, but I can't help thinking that they are basically placebos to get me out of their office.

Over the past year, I have developed Raynaud's and severe pain in my feet and knuckles. Just went back to my GP yesterday and did not feel AT ALL that she was listening to me. She ordered some blood tests, but I think she just looks at me like "here's another middle aged hypochondriac mommy". The thing is, I am otherwise healthy--never even get colds/allergies, etc. I don't think I am making this all up, but now she has me wondering. I am so frustrated right now--what are the implications if the blood tests are all normal, which I expect them to be? Am I just crazy then?

For me, it was like a switch was flipped on after the birth of my last child (now 8). I feel like a completely different person. It was at that time that I stopped working and also became a vegetarian. She didn't even ask me any questions about diet, lifestyle, nada. Maybe those things are connected, and maybe not. GP implied it was "just" depression. Maybe I don't do a good job relating my issues. I have begged my DH to come with me for support, but he won't (he thinks it is a bad idea, but is otherwise generally supportive).

[delightedbutterfly]

I am sitting on that "most likely Fibromyalgia" list... I finally found a doc who is willing to listen, although it's still not as much as I would like. She did a wack load of tests to rule out everything it is not. Everytime I would go to a doctor I would be the "completely healthy" person who just needed to lose a bit of weight... My doctor also can't believe how flexible I am. Yep I can move and bend and twist... but I am still in pain 24/7...

JaneS, I don't know if you "know" fibro but while supplements can't hurt, it's just not that easy. For a regular person who is experiencing those problem yes. For a person with fibromyalgia it is just not that simple. I take iron because without it I am anemic... with it I don't sleep as much and have better sleep patterns HOWEVER my fibro exahustion doesn't go away. So while it sounds strange that I can have more energy and be more awake I am still exahusted daily.

My doctor also sent me for bone scans and it turns out that I have some arthritis as well that was not picked up on blood tests. And I haven't been able to get a diagnosis for IBS either... (I just recently found my doc and we are still going through everything). There's no point in listing all of my symptoms... because well I have almost all of them. The biggest difference for me it seems is since having my second child I don't have long periods between flare ups and my flareups can last only as long as a day sometimes. So for the past 1.5 years I have been in a rollercoaster of flareups and good days. Before I had her it was more the "classic" longer stretches between flare ups and not. Always in pain but a liveable/ignorable day to day pain.

I have had this since I was 5 and it has gotten worse and worse. Once I had my second child it has gotten to the worst pain and sympotoms in my entire life. My doc hasn't come out and said it's FM but she's trying to treat me as it is. I am seeing a counsellor weekly (and yes to whomever asked conselling can help as it can help with the stress and anger trigger points) and that is helping some and since finding a doc who is willing to listen both my husband and my mom are suddenly sitting up and listening and believe me. My aunt is also in the same stage I am, where we know what we have but no doctor has been willing to "label" us, and because she has been talking so much with my mom that helps my mom "get it" as well.

The spoon theory is a good one. I might have to send that to my mom. I have read it before but it was still too soon for those around me.

I don't mention it often. Family knows I have pain, but they don't know how bad. Same with some friends. Partly because I don't want to be the "complainer" but mostly because I know they just won't get it.

Sorry for the novel but the weather changed overnight and today I am having a moderately bad day.

[JaneS]

Originally Posted by brymommy

JaneS, I don't know if you "know" fibro but while supplements can't hurt, it's just not that easy.

I'm very sorry I rubbed you the wrong way! I'll be back to explain myself. Healing my chronic pain and seeing chronic pain in others healing with all of these measures I explained (not just supplements, and not just small amounts) have given me a unique perspective I think to how the human body works that I am trying to share.

[delightedbutterfly]

Originally Posted by JaneS

I'm very sorry I rubbed you the wrong way! I'll be back to explain myself. Healing my chronic pain and seeing chronic pain in others healing with all of these measures I explained (not just supplements, and not just small amounts) have given me a unique perspective I think to how the human body works that I am trying to share.

Thanks for coming back. I totally agree that high doses of certain vitamins and mineral therapies can help. Completely agree, as I said above Iron helps (and I take a higher dose than recommended but not so high that it could be harmful) but I guess I get rubbed the wrong way when people (and I have heard it from MANY people) assume you are "just" deficiant in something. And that by adding/removing or similar will completely "cure". It most definately can help and make life a lot easier...

Unfortuneately having lived in this body for over 20 years and having tried many different things, I honestly don't think there is a "cure" for all chronic pain.

[Arianwen1174]

For those of you whose doctors are thinking you're a little nutty, I would suggest getting a referral to the rheumatology department of a medical school if there's one near you. A smart primary care doc sent me to Oregon Health & Science University and they knew right away that it was fibro and even asked me about a bunch of stuff that I didn't know could be related (like Raynaud's). I think they're more prepared at these places to give a proper diagnosis.

Gentle to you all!

ETA: And I'm really interested to see what JaneS has to say. But also bummed because I know there's pretty much no way I can do much natural healing things because of the cost.

[jeninejessica]

Originally Posted by QueeTheBean

Just went back to my GP yesterday and did not feel AT ALL that she was listening to me. She ordered some blood tests, but I think she just looks at me like "here's another middle aged hypochondriac mommy". The thing is, I am otherwise healthy--never even get colds/allergies, etc. I don't think I am making this all up, but now she has me wondering. I am so frustrated right now--what are the implications if the blood tests are all normal, which I expect them to be? Am I just crazy then?

For me, it was like a switch was flipped on after the birth of my last child (now 8). I feel like a completely different person. It was at that time that I stopped working and also became a vegetarian. She didn't even ask me any questions about diet, lifestyle, nada. Maybe those things are connected, and maybe not. GP implied it was "just" depression. Maybe I don't do a good job relating my issues. I have begged my DH to come with me for support, but he won't (he thinks it is a bad idea, but is otherwise generally supportive).

That sucks. I feel so lucky that my GP was so understanding and trusting. I went to her office at the time complaining of insomnia, exhaustion, mind fogs, nausea, upset/burning stomach, and back pain. She asked tons of questions about where I was in my life, my diet, my exercise, vitamins, stress, etc. For the first two weeks she had me just keep a detailed log of diets, sleep, moods, exhaustion levels, activity. We also started with blood and urine tests. Two weeks later, when that all came back normal, she was the one that suggested we might be looking at chronic fatigue (which I already kind of though...) and went on to explain that there was no real way to diagnose it other than by ruling out everything else. And so we started... she sent me fro more extensive blood work, a CT, a session with a neurologist for testing, we tried two sleeping pills and two antidepressants before the second one made me feel manic and I said I wouldn't try any more. She recommended seeing a therapist to 'rule it out' and I declined, because I'd fought depression several years before and I felt sure enough to decide that this was -not- being caused by depression. With depression I didn't want to do anyting... but with this, it's that I want to... I just literally can't.

Anyways, after all the tests and assessments and journals all came back normal, she said that as far as she could see, there was no other explanation that chronic fatigue. It's nice to be validated, even if it does mean that there's no 'cure'. She didn't give me an official "diagnosis", saying that since there's no cure, and nothing to really do, it will only hinder me in terms of insurance, etc. She does make sure to ask me about it every time I'm in the office though, and I do feel like she believes me. It makes a difference to have someone on your side.