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Old 07-31-2014, 12:00 AM   #2071
SpiritedHaunts
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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.

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Old 08-06-2014, 02:45 AM   #2072
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Originally Posted by SpiritedHaunts View Post
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.
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Old 08-11-2014, 07:30 AM   #2073
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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.
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Old 08-11-2014, 09:33 PM   #2074
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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 -
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Old 08-14-2014, 04:07 PM   #2075
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Originally Posted by SpiritedHaunts View Post
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
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Old 08-15-2014, 01:21 AM   #2076
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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.
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Old 08-15-2014, 08:48 AM   #2077
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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!
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Old 08-15-2014, 11:51 PM   #2078
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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 ..
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Old 08-17-2014, 01:48 PM   #2079
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Quote:
Originally Posted by 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.
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!
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Old 09-06-2014, 02:02 PM   #2080
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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.
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Old 09-16-2014, 12:19 AM   #2081
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I haven't checked in in so long, that I feel badly..

How is everyone? Roll call maybe? or a check in if anyone wants to? hugs

Here well.. We had an ok trip.. Weather was decent.. Father in law is early Alzheimer's, so we basically didn't have a minute without following him, and he left the cabin (connecting) at all hours of the night .. But it was ok..

Back home now, and my insurance is offering me a lump sum to buy me out.. I am countering, and awaiting what they say.. My lawyer is nervous, as we all know our illnesses are invisible, and in a court of law don't stand up very well, so if the counter is decent I am going to accept and invest the $$ and after xmas look for a part time job.. I worry if I don't, and the horror stories of then getting cut off.. I have 20 years left of payments, and right now with DH getting laid off just before our trip, well times are very different for us..

Pain was good during the summer, as best as I get during the year.. The cold is coming, and my pain isn't good.. Love DH, but HATE Him home.. >It just doesn't work out so well..... He is used to working hard, and is frustrated, and my heart goes out to him, and I am used to doing my thing.. We are still renovating, so he is busy, but not the busy he is used to..

gentle hugs all around
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Old 09-16-2014, 10:51 AM   #2082
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Hi everyone:

Wanted to check in. It's been a strange year so far. We spent 6 weeks living in a hotel while our main bathroom and family room were torn apart and then remodeled from water damage from a burst pipe. You'd think living in a hotel suite would be relaxing, and the hotel itself was fine, but the entire process with the house was extremely stressful. And we know how stress effects most of us.

We're also still adjusting to our finances, minus my salary since I stopped working in February. I was denied for disability insurance (SSDI) so I have now turned my case over to an attorney. That was a good decision because she handles everything for me. It just will take a long time, probably some time mid-2015 before I will have definite final answer.

So we just made to decision to cancel our Disney cruise that we had planned for next year. Because it was a 2-week cruise, the pay-in-full date was sooner than a 7 night cruise, and there's no way we'd have the remaining balance in time to pay it off by end of December.

But next year is a big anniversary for us in July, so we are going to WDW to celebrate, instead of the cruise. And this gives us 5 additional months to pay it off before we go. I love WDW, so as disappointed as I am to cancel the cruise, I'm very happy to be going back to WDW and the Polynesian resort.

I've been seeing my rheumatologist and he has ordered some kind of test for me, for which my neurologist will perform. I can't remember the name of the test, but it's some kind of electrode test to see how bad my carpal tunnel is.

I still have debilitating fatigue.

Hugs and pixie dust to everyone.
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Old 09-16-2014, 12:12 PM   #2083
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Hi everyone:

Wanted to check in. It's been a strange year so far. We spent 6 weeks living in a hotel while our main bathroom and family room were torn apart and then remodeled from water damage from a burst pipe. You'd think living in a hotel suite would be relaxing, and the hotel itself was fine, but the entire process with the house was extremely stressful. And we know how stress effects most of us.

We're also still adjusting to our finances, minus my salary since I stopped working in February. I was denied for disability insurance (SSDI) so I have now turned my case over to an attorney. That was a good decision because she handles everything for me. It just will take a long time, probably some time mid-2015 before I will have definite final answer.

So we just made to decision to cancel our Disney cruise that we had planned for next year. Because it was a 2-week cruise, the pay-in-full date was sooner than a 7 night cruise, and there's no way we'd have the remaining balance in time to pay it off by end of December.

But next year is a big anniversary for us in July, so we are going to WDW to celebrate, instead of the cruise. And this gives us 5 additional months to pay it off before we go. I love WDW, so as disappointed as I am to cancel the cruise, I'm very happy to be going back to WDW and the Polynesian resort.

I've been seeing my rheumatologist and he has ordered some kind of test for me, for which my neurologist will perform. I can't remember the name of the test, but it's some kind of electrode test to see how bad my carpal tunnel is.

I still have debilitating fatigue.

Hugs and pixie dust to everyone.
6 weeks must be rough indeed..
Giant hugs to you.

I have had to cancel myself, but SUPER glad to see what you have planned instead!!!

I think it is the EMG, but maybe I am wrong... I have had them all over the body, the hands isn't too bad... Lots of love and gentle hugs to you..
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Old 09-24-2014, 09:54 PM   #2084
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Hi all I just wanted to commiserate a bit about my conditions as of late.

I have always loved travel, though been very anxious about it at times. I have to WDW, DL(very long ago), and multiple out and in of country trips. So, while my nerves get to me I have had a ball.

Now it is just Mom and me going out. Due to issues I have since birth and developed my world has gotten smaller.

Mom helps all she can but she has none of these problems, at least to the same degree and therefore can't grasp a lot of my sadness with this new Fibro diagnosis.

Twice, this year alone I have had to miss two trips. One would be going on now.

Due to an error with SW we have some travel monies expiring and have a tentative plan to go to DL. This scares me. What if I can't go again? DL is basically all new to me and our original plan was to go to WDW to test traveling with Fibromyalgia.


So, anyone have a site to vent at or to gather strength from, aside from here?
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Old 09-26-2014, 06:38 PM   #2085
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FM has severely impacted my WDW trips.....

My last three trips, I have gotten so ill, I needed bed rest for several days on the trip. This last trip, it was so bad, it was about half of our days and almost had an ER visit (called local dr. and was waiting to see if things got worse). What are your best tips/advise for staying healthy and not getting overly frustrated (ex park commando)on your WDW trips? TIA!
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