Fibromyalgia Thread

[disneyseniors]

Yep--that's me. Don't let it get you down but also deal with the challenges. And I do the same thing with the ECV--because experience has shown if I walk about the park all day I won't be able to move much the next day either-- and have been concerned that people think I'm faking--because I will drive to each major area and then walk around. I'm sure they're thinking--look at that fat lady on that scooter--she's too fat to walk around Disneyland. I am just WAITING for someone to actually say something to my face--I figure it's just a matter of time--and then I will pull up my capri leg and show then my surgery scars--LOL!! I am actually looking forward to our warm SoCal weather--little humidity--so I just feel better with the warmth and all--I sometimes use an electric blanket even in the summer just to keep myself warm.

(Of course, can't use it now that the new puppy chewed through the cord--oh yeah, need to get that fixed . . . . )

Glad you found us Nicole--wish you were local because Bridgette is moving out here and we're going to be celebrating her birthday at DL in July!

Hi toocherie: I know what you mean about feeling guilty somehow for having an invisible disease and wondering what other people are thinking when you get up to stretch and walk a little from your evc. I have just decided to do what I have to do to feel better, and let others think what they want. I would not wish this disease on anyone, but they need to walk a while in someone elses shoes. I park in handicapped with my sticker, and you would not believe the looks I get from some people. I look "normal", but if they could see all the places I hurt, then they would know how it feels. So hang in there, have fun, and ignore the ignorant people who look at you questionably

 

[mommasita]

TulipsNZ and disneyseniors.

Normally this is more active, I think the summer tends to find people more busy.

I have to admit, I cruise, and hardly ever go to the parks, so don't have a lot of advice to give on that..

I used to take tramadol, and found it just a godsend. Sadly after my brain surgeries I can no longer take it ....

I think taking a break and going back to the room sounds like the best plan..

I understand you guys.. It isn't easy on most days with people.> I turned 45 Sunday, and to look at me you wouldn't know it, but man on the inside it isn't pretty.. Life is too short to worry about these negative nellies.. meh to them

 

[SpiritedHaunts]

Does this sound similar?

We are now on to neurologist number two. She is tyring to get four part MRI with contrast ordered.

My father's aunt has been diagnosed with cryonic fatigue and fibro for several years now. She thinks that is our problem too, but no diagnose had been made here.

Fifteen years ago a neurologist found left temporal dischargement, some areas of non myleinonation, myotonic epilepsy and maybe other.

Fast forward to this year, neurologist, after an series if tests on muscles and non contrast brain MRI, has diagnosed nothing. Probably just 'depression' . 'Just need to take walks and get some sun.'

So, new neurologist, who is ordering full MRI with contrast and other possible tests like a spinal tap, seems to see that something is wrong. She asked a lot of questions and saw that my extremities were swollen. I looked normal, or so I thought, she even said I looked 'worn out'.

So symptom wise, there are headaches, tremors, random pains all over, muscle pain, muscle weekness, joint pain, muscle freezing and horrible 'spasms' that cause gut wrenching pain, physical jolts, and sleepless nights.

So, to all who have fibro, does this sound similar at all? We know something is very wrong and life as we knew it has stopped. Any ideas would be beneficial.

 

[TulipsNZ]

I take low dose naltrexone and it's changed my life, I am so much better, I remember a month after starting it going for a walk with my family and spinning in circles in joy as I had not been able to do that in so long. I also take tramadol when it's bad and heat therapy. I'm also on cipramil for OCD. I just bought myself a cane chair for our upcoming Disney trip. I'm so excited.

 

[TulipsNZ]

Does this sound similar?

We are now on to neurologist number two. She is tyring to get four part MRI with contrast ordered.

My father's aunt has been diagnosed with cryonic fatigue and fibro for several years now. She thinks that is our problem too, but no diagnose had been made here.

Fifteen years ago a neurologist found left temporal dischargement, some areas of non myleinonation, myotonic epilepsy and maybe other.

Fast forward to this year, neurologist, after an series if tests on muscles and non contrast brain MRI, has diagnosed nothing. Probably just 'depression' . 'Just need to take walks and get some sun.'

So, new neurologist, who is ordering full MRI with contrast and other possible tests like a spinal tap, seems to see that something is wrong. She asked a lot of questions and saw that my extremities were swollen. I looked normal, or so I thought, she even said I looked 'worn out'.

So symptom wise, there are headaches, tremors, random pains all over, muscle pain, muscle weekness, joint pain, muscle freezing and horrible 'spasms' that cause gut wrenching pain, physical jolts, and sleepless nights.

So, to all who have fibro, does this sound similar at all? We know something is very wrong and life as we knew it has stopped. Any ideas would be beneficial.

Yes very similar, do you get nerve pain? I get skin creeping, it feels like someone has twisted the skin on my arms or whereever and they dragged me over nylon carpet. I never knew how much pain I was in until I was properly medicated and without it all the time. I said to my Dr that I thought I was just getting old, he said people in their 30's do not generally get out of bed and hobble in pain it's not normal. Anyway good luck and ask lots of questions it helps.

 

[WheeledTraveler]

I take low dose naltrexone and it's changed my life, I am so much better, I remember a month after starting it going for a walk with my family and spinning in circles in joy as I had not been able to do that in so long. I also take tramadol when it's bad and heat therapy. I'm also on cipramil for OCD. I just bought myself a cane chair for our upcoming Disney trip. I'm so excited.

For those worried about addiction, naltrexone is pretty much the safest thing you can take. In normal doses, it's used to counteract narcotic overdoses. In the last decade or so, there's been more research on and use of low doses for pain control. They think it bonds the correct way to certain pain receptors to kinda break the patterns in reception that result from chronic pain (that's an overly simplified description, but I'm struggling to get my brain to be clearer). What you really can't do is take it at the same time as narcotics. It won't necessarily hurt you, but the narcotics won't do anything at normal doses because the receptors they'd normally bond to are being filled by the LDN. It's being used for fibro, MS, and quite a few other conditions that include chronic pain.

As far as I know, in the US low-dose naltrexone is only available using compounding pharmacies. That means you do need to find a doctor willing to work with one (preferably who already has a relationship with a compounding pharmacy) and insurance doesn't always cover compounded medications.

I haven't taken it, but the PP's experience is pretty close to the ones I read when researching to see if I wanted to try it. It either helps or doesn't particularly do anything. I'm sure there are side effects, but I can't remember hearing about any particularly horrible ones. I ended up not going for it, but I have more than fibro going on and it doesn't fit my needs.

 

[mommasita]

Does this sound similar?

We are now on to neurologist number two. She is tyring to get four part MRI with contrast ordered.

My father's aunt has been diagnosed with cryonic fatigue and fibro for several years now. She thinks that is our problem too, but no diagnose had been made here.

Fifteen years ago a neurologist found left temporal dischargement, some areas of non myleinonation, myotonic epilepsy and maybe other.

Fast forward to this year, neurologist, after an series if tests on muscles and non contrast brain MRI, has diagnosed nothing. Probably just 'depression' . 'Just need to take walks and get some sun.'

So, new neurologist, who is ordering full MRI with contrast and other possible tests like a spinal tap, seems to see that something is wrong. She asked a lot of questions and saw that my extremities were swollen. I looked normal, or so I thought, she even said I looked 'worn out'.

So symptom wise, there are headaches, tremors, random pains all over, muscle pain, muscle weekness, joint pain, muscle freezing and horrible 'spasms' that cause gut wrenching pain, physical jolts, and sleepless nights.

So, to all who have fibro, does this sound similar at all? We know something is very wrong and life as we knew it has stopped. Any ideas would be beneficial.

It honestly does sound familiar.. I suffered for far too many years as well.. One Neuro told me I was "fat and just lazy'.. I left that appt in tears driving home.. I honestly am not sure how I didn't get killed.. He was so obnoxious.. He told me that my Gp ordering a brain MRI was a waste of the Gov's money.. I told him it wasn't My call.. Fast forward to a few weeks later, and my Chiari Malformation was found.. I won't go into it..

I want to tell you to PLEASE not give up.. We don't have to suffer, we should not have to suffer.. The Doctor who was my godsend was my Rheumatologist.. He just listened for over an hour and said I think BESIDES Fibro, I think you have Sjogren's syndrome... It is a rare auto immune, and I tested positive, and he was spot on..

I also get nerve pain, the best I can explain is like someone lit a match to my skin, and is burning it... Winter is worse for me, so right now being summer the pain is somewhat less.. Heat and humidity do help, and doing less also..

Can you get another opinion?

 

[rosanab1031]

My first time posting in this thread (I think ) but this raises a huge red flag for me. I've had fibro for many, many years (diagnosed 12 years ago at the age of 27 but had it well before then) and it's only gotten worse as far as pain level and what I'm able to do. If your fiancé isn't supportive now, I would be very scared of what happens when you get close to 40 (as I am now), when kids come along (if you want kids anyway), etc.

My dh is mostly supportive , but he has a philosophy of "working through the pain". Well, that's not my motto. In fact, if I were to try that, I'd be bedridden for a week. My dh does know all about pain though, as he has several disc problems and RA as well. His mother has fibro as well as a host of other problems, so he's been around pain for a long time.

Not trying to be all up in your business honey, but just wanted to offer advice. Hope I didn't offend.

To everyone else: hi! Sorry we have to be here. I currently only take advil and ultram for pain-but it's not even coming close to helping. I'm pretty anti-med, but I can tell that's going to have to change. I've tried Cymbalta (made me even more depressed) and lyrica-just didn't like it.

I currently work part time (2-12 hr shifts on the weekend) and homeschool my 2 kids. It's getting to be too much. Dh finally has a better paying job, so I'm hoping to go really part time by the end of the year. *fingers crossed* as that has been my goal for 10+ years-but I was always the bread winner until this year. My dream is to not have to work and just stay home w/ the kids and homeschool them, but I don't know that that will happen. The job will go before homeschooling goes.

Yesterday was very, very rough. Someone worked for me so I had big plans for my day off. Ha! I was barely able to move all day. Felt like I had the flu, although it was just the fibro rearing its ugly head. Feel a bit better today, but still in lots of pain.

Here's to a pain free day for every one.

HAHA! No worries about "being all up in my business". Lol

We actually had to have a really serious talk about it and he has been a lot better. He's even been giving more foot rubs. Lol! He definitely is a "work through the pain" type.

I have had such a busy summer!

My sister and I took our long over due trip to Europe. We had a great time! We did Italy and Paris. It was so nice. And of course we got to go to Disneyland Paris.

I started taking my classes for my esthetician license. I'm having a lot of fun

We still need to move and we just have not been able to find a place to take our 3 kitties I don't know what to do. The one place that we have found that will allow us to have 3 cats is out of our budget. We have successfully kept one of our kitties hidden in our current place, i just don't like being untruthful but to keep my kitties it seems like I will have to be. Getting rid of one is not an option.

Comic Con is next week! EEEEP! I have a lot of work to do! And then it's back to work August 6. Boo! Lol.

 

[SpiritedHaunts]

Thanks for replying. This neuro said that all the MRI results were clear. Meaning no MS or other horrible brain or spine issue.

She wants me to see a rumitist who deals in fibro as well and to get a lumbar puncture. She talked with my gp who wants to have an appointment to.

So, so far so good. She seems to think that there is a problem. White blood cells went up 2000pts over night and I was high on whatever marker there is for lupus.

I am hoping that the rumitist can be scheduled before the spinal tap, is one needed for a diagnosis of fibromyalgia? I'd like to avoid that one if needed.

We are planning a trip in September and may need a wheelchair or ecv, not sure which, for the first time. Tres nervous about that. Maybe looking into a DAS for the autoimmunity issues and crowd/loudness issues, if doable.

Thanks for being so nice. I am and will continue to ask questions. Still learning and diagnosing.

 

[mommasita]

HI.. No spinal tap is needed to diagnosis Fibro.. It is really clinical..

A good Fibro is really what you need in my opinion, and what a blessing that can be..

Glad to hear your MRI's have been negative.. Hoping the Spinal Tap is..

 

[SpiritedHaunts]

Thanks. We are terrified of getting the spinal. Well, more the getting to the far location to do it with no anti nervous meds in system. It should be sedated.

I have a new Dr. appointment on Monday and maybe he can prescribe a pill to get me there or preferably, give me an answer sans a spinal tap. Knowing me I'll get the headache.

Haven't eaten for two over days now, with a mondo headache and nausea. Hopefully, that is stress as my brother was/ is the hospital and I am in so much pain.

Trying to decide on a wheelchair for a seat/waker, since my knees and joints can lock up or a ecv. I know mom can't push me nor can I, but maybe running over people who stop in front of me would be a fun game. J/k. I'd hate to cause someone else to need one.


Thanks for the well wishes. Now we just need good thoughts for a no need to do a spinal tap.

 

[mommasita]

Thanks. We are terrified of getting the spinal. Well, more the getting to the far location to do it with no anti nervous meds in system. It should be sedated.

I have a new Dr. appointment on Monday and maybe he can prescribe a pill to get me there or preferably, give me an answer sans a spinal tap. Knowing me I'll get the headache.

Haven't eaten for two over days now, with a mondo headache and nausea. Hopefully, that is stress as my brother was/ is the hospital and I am in so much pain.

Trying to decide on a wheelchair for a seat/waker, since my knees and joints can lock up or a ecv. I know mom can't push me nor can I, but maybe running over people who stop in front of me would be a fun game. J/k. I'd hate to cause someone else to need one.


Thanks for the well wishes. Now we just need good thoughts for a no need to do a spinal tap.

I was away for the weekend, how did it go?

I wish I could say good and positive things on the Spinal, but I honestly have had no good experiences there.. THe headache is almost a guarantee, but do as they advise.. Lay flat for as long as they say, and longer if you can.. I am on the verge of an EDS diagnosis, so no more Spinal's for me, as I have had very bad reactions..
hoping for a good update.

MIss everyone.

 

[SpiritedHaunts]

Thanks for asking. The doctor, upon examining and talking to me and the neuro, decided to look into other things first. The neuro already cleared me of MS and the like. Since the spinal was for moderate lupus markers that the new doc said most people without lupus show positive in he wanted to do more blood tests.

Right after we went to get xrays and a butt load of blood. Creepy place where a lady passed out and I saw viles in sizes I had never before seen.

Now we wait until next week to go back. The nurse did call and said no lupus or arthritis, but high ana (still trying to figure out what that means) and a few things that all lead back to possible fibro. Apparently my mother's thyroid problem counts as thyroid disease and that could mean, if genetic, I got wammied on both sides. Yeah, me!

Sorry for saying so much. This is all so new. And sorry for taking so long to say it, I've been pretty sick lately.

Thanks for listening and now I know I am not alone.

 

[North of Mouse]

So sorry for all that y'all are going through. Have been mostly a lurker and have not read all the posts. I do understand and empathize about Fibro pains though.

Was finally diagnosed 12 years after my youngest child was born - had an extremely hard delivery with no meds (bp plummeted) and started having unexplained pain from then on.

It comes and goes and even though very bad at times have resisted being on pain meds. I do have a question for anyone in the Raleigh/Durham area of NC. Have been having a very hard time finding a knowledgeable Fibro rheumatologist in this area - so frustrating.

If you live near here and have a good Dr. would you please pm me. Thanks so much.

I try not to say much about my pains except to DH & sis as people tend to think (or seems so to me anyway) that it's all in your head, or worse, just a hypochondriac looking for attention.

Good days to all -

 

[rosanab1031]

Thanks for asking. The doctor, upon examining and talking to me and the neuro, decided to look into other things first. The neuro already cleared me of MS and the like. Since the spinal was for moderate lupus markers that the new doc said most people without lupus show positive in he wanted to do more blood tests.

Right after we went to get xrays and a butt load of blood. Creepy place where a lady passed out and I saw viles in sizes I had never before seen.

Now we wait until next week to go back. The nurse did call and said no lupus or arthritis, but high ana (still trying to figure out what that means) and a few things that all lead back to possible fibro. Apparently my mother's thyroid problem counts as thyroid disease and that could mean, if genetic, I got wammied on both sides. Yeah, me!

Sorry for saying so much. This is all so new. And sorry for taking so long to say it, I've been pretty sick lately.

Thanks for listening and now I know I am not alone.

No need to be sorry! Say as much as you'd like. We are all pretty good skimmers here... I think. Hahaha!

I know how it is taking all those steps to a diagnosis. It is no fun at all! I got tired of "try this anit-depressant, now try this one... and now this one!" UGH! One of the number one side effect of anti-depressants is the fatigue they cause and that was actually my number one complaint! I mean the pain sucks but I learned to deal with it. My biggest issue was that I was falling asleep everywhere!

Fast forward to today and things are under much better control! I am on no regular medications and take things like Norco and muscle relaxers as needed. I also fight the fatigue with caffeine. Lol. I know its not the best thing for me but hey! It works and that's what I need.

I also get chiropractic care and I do yoga I feel diet also has a big impact and I could definitely be doing more on that end.

Well that it from me for meow!

Much love and many pain free hugs to all

 

[mommasita]

As Rosanb said, please NEVER be sorry for saying too much.. We are a gently bunch here..

If you are confused on your blood results, I would ask for a copy of it.. It sounds like you may be to me.. That way you can look it up after your Dr visit.. I know myself I tend to forget everything , but that is me, not everyone..

North of Mouse, I wish I was closer, maybe someone else is.. A good Dr is a godsend indeed..

Rosandb: So glad to hear things are going well for you!!!!!

Well last week we booked the Freedom of the Seas, and we are driving to Florida next Thursday.. We have had a rough summer.. We lost our Aunt at 65 two weeks ago due to Cancer... After booking this Cruise, literally the next day my husband was laid off ... We are still going, he is so upset, hurt, betrayed, the whole 9 yards.. He has a small severance, as he was only there 7 years, has a few offers (less $), so he will NEED this holiday for sure, as who knows when the next one will be.. I feel so badly for him.. He works like a nut, 6 days a week, has taken 1 sick day in his 7 years.. I was at my Neuro appt who basically told me that morning I would more than likely be looking at permanent disability, and a future with EDS, and I came home to find him here, which is just not normal. The past week I have cried with worry, with pain for my husband, so much emotion.. I haven't even told him yet what the Dr told me.. We will take this holiday as a family, much needed, much deserved.. Then it is back to school, and he will seek new employment..

I hope I can see this year end with better news.. We never saw this coming obviously... I know there is always someone worse, it is just really difficult to see it right now..

Hugs all around.

 

[North of Mouse]

As Rosanb said, please NEVER be sorry for saying too much.. We are a gently bunch here..

If you are confused on your blood results, I would ask for a copy of it.. It sounds like you may be to me.. That way you can look it up after your Dr visit.. I know myself I tend to forget everything , but that is me, not everyone..

North of Mouse, I wish I was closer, maybe someone else is.. A good Dr is a godsend indeed..

Rosandb: So glad to hear things are going well for you!!!!!

Well last week we booked the Freedom of the Seas, and we are driving to Florida next Thursday.. We have had a rough summer.. We lost our Aunt at 65 two weeks ago due to Cancer... After booking this Cruise, literally the next day my husband was laid off ... We are still going, he is so upset, hurt, betrayed, the whole 9 yards.. He has a small severance, as he was only there 7 years, has a few offers (less $), so he will NEED this holiday for sure, as who knows when the next one will be.. I feel so badly for him.. He works like a nut, 6 days a week, has taken 1 sick day in his 7 years.. I was at my Neuro appt who basically told me that morning I would more than likely be looking at permanent disability, and a future with EDS, and I came home to find him here, which is just not normal. The past week I have cried with worry, with pain for my husband, so much emotion.. I haven't even told him yet what the Dr told me.. We will take this holiday as a family, much needed, much deserved.. Then it is back to school, and he will seek new employment..

I hope I can see this year end with better news.. We never saw this coming obviously... I know there is always someone worse, it is just really difficult to see it right now..

Hugs all around.

Awww, so sorry

My mom always taught us to look around us when we felt 'down', and we could always see someone else worse off. You have it coming from all directions and I hope you feel better, and your hubby will quickly find another job. My dh is retired from a good company so we no longer have 'laid off' worries and I so feel for those of you that do have to go through these experiences.

Here's to a well rested vacation and better days ahead!

 

[mommasita]

Awww, so sorry

My mom always taught us to look around us when we felt 'down', and we could always see someone else worse off. You have it coming from all directions and I hope you feel better, and your hubby will quickly find another job. My dh is retired from a good company so we no longer have 'laid off' worries and I so feel for those of you that do have to go through these experiences.

Here's to a well rested vacation and better days ahead!

Thank you.. Indeed we are trying to do that.. We are taking our cousin, who just lost her mother, and her children, who have never gone ANYWHERE.. I am beyond excited to see it through their eyes We have lost our income, she lost a mother.. We travel A LOT, so now we really want to sit back and see this kids just enjoy ..

 

[rosanab1031]

As Rosanb said, please NEVER be sorry for saying too much.. We are a gently bunch here..

If you are confused on your blood results, I would ask for a copy of it.. It sounds like you may be to me.. That way you can look it up after your Dr visit.. I know myself I tend to forget everything , but that is me, not everyone..

North of Mouse, I wish I was closer, maybe someone else is.. A good Dr is a godsend indeed..

Rosandb: So glad to hear things are going well for you!!!!!

Well last week we booked the Freedom of the Seas, and we are driving to Florida next Thursday.. We have had a rough summer.. We lost our Aunt at 65 two weeks ago due to Cancer... After booking this Cruise, literally the next day my husband was laid off ... We are still going, he is so upset, hurt, betrayed, the whole 9 yards.. He has a small severance, as he was only there 7 years, has a few offers (less $), so he will NEED this holiday for sure, as who knows when the next one will be.. I feel so badly for him.. He works like a nut, 6 days a week, has taken 1 sick day in his 7 years.. I was at my Neuro appt who basically told me that morning I would more than likely be looking at permanent disability, and a future with EDS, and I came home to find him here, which is just not normal. The past week I have cried with worry, with pain for my husband, so much emotion.. I haven't even told him yet what the Dr told me.. We will take this holiday as a family, much needed, much deserved.. Then it is back to school, and he will seek new employment..

I hope I can see this year end with better news.. We never saw this coming obviously... I know there is always someone worse, it is just really difficult to see it right now..

Hugs all around.

Oh goodness! I am so sorry! It really stinks seeing things like this happen to good people But hopefully only better things can come! Have a wonderful trip! No doubt you and your family deserve it!

I had my first full week back to work and it just about killed me! Lol. The first week back is always the hardest! Plus my kitty is sick so it's been really stressful Stress just makes my fibro flare up like crazy!

Really wish my weekends were longer. Lol. But this may very well be my last one! I'm crazy and decided to try a part time job. I'm trying to get out of debt and buy a house in the next 3 years so it's going to be nothing but work work work for a while. The good thing is I'm REALLY excited for my part time job

Well that's it for MEOW!

Much love and many pain free hugs to all!

 

[SpiritedHaunts]

It's official, maybe?. The Dr finally cleared me of everything, but FMS, which he thought it was, so I now have about 20 pills to take a day and am still in pain. Must take a long while to find the right thing.

We thought this was good news, no disease eating away at me and knowing what we are dealing with.
Then we saw the neuro for a followup. She agrees with the diagnosis, but is concerned over the white cell count and wants me to go to a hemoglobinist and an infectious diseases doc. Yay! :-(

We have a tenetive appointment for the Wednesday before we leave for WDW. We figured we can be worried/sick at home or worried/sick at WDW. So, the trip is still on. Even if we only go to watch Off Kilter all week all will be good.

Hope everyone is doing ok.