Fibromyalgia Thread

[EDuke98080]

The sleep flip is so frustrating. I have people tell me do not have naps. There comes a time in the day when I literally cannot keep my eyes open. Some days I don't have a nap but some days if I did not have a nap I would not make it till bedtime.

I find if I go to bed earlier I lay there awake anyways and if I do fall asleep, I will be awake by 3.

However I had a question for you all, I was at the hospital most of the day today. Yesterday I woke up feeling very good, was amazed that I wasn't tired. However, after an hour I felt very sleeply but tried to stay awake. I had dizziness and nauseau all day. I spent the day on the couch sleeping on and off. Went to bed about 12:30 am and had the most excruciating chest pain that went around to my back. I had three episodes and in all they lasted about 5 min all together. My son was very scared. I almost felt like I was having a heart attack. It was so painful. I have never had that much pain. I have had fibro chest pains but this was different.

I went to bed thinking if it really is a heart attack, I will wake up with the pain. Stupid, I know for a girl who used to work at a clinic and triaged patients, but was so exhausted I jsut wanted to lay down and hope the pain didnt come back. So this morning my DS was telling me he wanted to stay home and take care of me.

I was kinda worried but felt ok this morning but went to the hospital anyway. They did an EKG (I think) he said I had an abnormality on it. Don't know what that meant. He wanted to do a stress test and an echo on me, and I told him I just had my heart checked in the summer and I was fine. So he got the results and those were fine but now had this abnormality. I didn't ask him what - Im not good with drs. I do know that he said I didn't have a heart attack but if it happens again come immediately to the hospital. My son said that the dr. said that I could have had this abnormality and just not known about it.

so my question is, have any of you had this before, and what the heck should I do now???

Oh Bright, I am sorry you had such a rough time. I have been to the hospital once with shooting pains across my chest. They were so bad I couldn't catch a deep breath. They did an EKG and bloodwork and told me that it was muscle. That's the thing about fibro, you can't trust what your feeling and never know if it is a "real" pain indicating "real" trouble or a fibro pain which is just as real but means nothing. I so feel for you and I would make an appointment to see your PCP to follow up and get an explanantion on what abnormality they saw and if it is something to be concerned about. When I have bad unexplained pains I try using icey hot and if it gives me relief then I try and be calm and chalk it up to muscle. If the icey hot thing doesn't help I will go get it checked out if it persists. I hope you feeel better soon!

 

[brighteyes]

Oh Thanks guys. You make me feel better, I hate feeling like a hypochondriac!! But you are right, they will send it to my family dr. so I will go in and see her. She understands my fibro.

You are right, that fibro makes this hard to distinguish from something is really wrong pain. But this really did scare me, it was so severe. I felt like someone was squeezing my body all the way around right underneath my breast and that I couldn't breath because the pressure was so tight. I have had stabbing, sharp pains that take your breath away for a minute but not like this.

I will call my dr. and get her to tell me what the abnormality is. The dr said something about the muscle could have been constricted or something???

The good news is I haven't had any more pain like that since.!! I don't know if I mentioned this but he also did a blood test to check my other organs. I guess if I had heart trouble that would affect my liver, etc. But he said that was fine too. so that is good. And my DS is being nice to me. lol

I will check in tomorrow just to let you know I am here. I have to go to my student work placement though but it will be in the evening.


Thanks, you guys have made me feel better.

I think I will go to be early tonight ha ha

Stephanie

 

[EDuke98080]

Hi Stephanie- Thinking about you and hope your doing better today!

 

[tiggspring]

Hey Stephanie hope you had a good day in class and a painfree day!

 

[brighteyes]

Hi everyone. I am doing good today, I am sorry I posted before but obviously didn't press the send button. So maybe I am not as good as I thought.

I have a dr appointment so I can go over the EKG and find out what was abnormal. But that's not till next week.

I hope I didn't worry you all, here I am thinking I posted hours ago after my nap.

I tried to go to be early last night and was still up till 3 and had a nap when I got home. Some things never change.

Hope you all have a good day. Thanks for checking in.

 

[Momelie]

I really don't know where else to turn.......

Fibromyalgia is a secondary diagnosis for me. My primary diagnosis is an autoimmune arthritis, for which I have been taking a biologic medication via infusion for the last 3 1/2 years. Over the last year its become documented (as in black box) that a known side effect of the drug is non-Hodgkins Lymphoma. Lordy, that hurt to write.

Over the last 4 months, my pain management doctor, who treats the Fibro and the arthritis pain, changed my fibro medication from Lyrica to Topamax because of the weight gain from the Lyrica. I was so thrilled with the weight loss! At this date, 4 dress sizes - I'm smaller than my 14 year old!!!! I thought it was all from the Topamax/Fibro connection.

Then at the end of September, I came down with what I thought was the flu. No surprise that with my weakened immune system, the Tamiflu didn't work and I had to go on antibiotics, as it settled in my lungs, and I became short of breath, and just taking a shower exhausted me. I've been on antibiotics from September 26th till this past Tuesday. My white blood cells have risen continuously, and I have continued to run a low grade fever, no matter what.

The primary care doctors have kept switching antibiotics, and one suggested that I might be starting peri-menopause (I'm in my early 40's, but had a partial hysterectomy in my mid '30s, so wouldn't know via the usual symptoms). Yesterday, they finally threw in the towel and are referring me to a hematologist/oncologist.

Probable diagnosis: Non-Hodgkins Lymphoma. :scared1

I'm scared spitless. So's DH. We haven't told the girls (14 and 11). Or my parents. I have an appointment at Moffitt Cancer Center on Tuesday for a bone marrow biopsy and as I type this I really can't believe I'm writing these words in relation to me! All I wanted to do was walk and move without pain, and get a little of my energy back. Was that so bad?

Help? I need to go be homework wrangler for a little while, but I'll be back! Thanks!

 

[EDuke98080]

I am sorry for what you have to go through. Please remember we are here to lean on.

 

[tiggspring]

Momelie,
I'm so sorry!!!! I know how scary this must be for you and your DH. My DH1 had hodgkins Disease back in 1987 when they had just started to make progress back then. Now there is alot they can do. Hopefully the specialist will find that the first doctor is wrong. It happens more then you would think. Sending good thoughts your way. Eduke is right, lean on us

 

[Momelie]

Thanks so much, guys!

After a night's sleep, I'm starting to feel marginally better. I guess I don't need to tell other fibro people how much better that does make you feel, huh?

Its just weird, though, how a drug for one disease can so completely mask the symptoms of something else going on with another! I wish there was a way to have like an internal spreadsheet or something that could sort everything out, y'know?

 

[Indiana Rose Lee]

I am so sorry. A friend was diagnosed last year, and while it was a tough year, he is doing well. I pray for peace for you and your family and calmness as you choose what you need to do. I hope you don't mind a prayer.

re. shoes, my legs are a mess everytime i switch. It always scared me, and I think that I am going to be lame forever.

 

[TLSnell1981]

Thanks so much, guys!

After a night's sleep, I'm starting to feel marginally better. I guess I don't need to tell other fibro people how much better that does make you feel, huh?

Its just weird, though, how a drug for one disease can so completely mask the symptoms of something else going on with another! I wish there was a way to have like an internal spreadsheet or something that could sort everything out, y'know?

My thoughts and prayers are with you. It's awful, we become so accustomed to pain.....we don't always look past the fibro.

 

[SeaSpray]

Hi everyone:

It's only 1pm, I have to work until at least 9pm (I've been here since 8am), and I'm dying already here, EVERYTHING HURTS and I feel exhausted. Each day I'm getting worse and worse. Doctor appt on Monday though, and I'll get a new prescription for Lyrica.

I hate feeling like this; barely making it through the work day and then having no energy to do anything once I get home.


Ok, my pity party is over now. (P.S. Working so late today because I'm in accounting, and each "last-work-day-of-the-month" we have to work late).



Momelie: I'm so sorry to hear of your possible diagnosis. I hope all goes well with your test on Tuesday. Sending good thoughts your way!

 

[brighteyes]

Hi everyone! YooperMom directed me to you guys! I was diagnosed with Fibro and OA yesterday- the doc also ordered blood work for RA and Lupus.

Any info you guys could give me is MUCH appreciated!

Apparently I missed this posting. When I was first going through the testing phase, I was given the same tests for RA and Lupus. The second lupus test was negative though. I will cross my fingers for you, as Fibro and OA are enough.

Fibro is quite a learning curve I find, three years later I am still learning. Each one of us responds differently to different things.

Are u on any meds? How are your symptoms? Sometimes the smallest little thing like scrubbing the tub can leave me in pain for days.

Stephanie

 

[brighteyes]

I'm on my phone so I hope this makes sense.

Back in Jan 08 I began having unusual chest pain and noticed my heart skipped every fourth beat. I went to my gp and had a ekg then a ecocardiogram (sonagram of the heart) It showed the abnormality in the rythum but no "problem". Not satisfied with "we don't know why"I went to a cardiologist because "I don't want to go to the park with my kids and drop dead". He put me on a heart monitor for a month. Every time I felt something odd I would record it then send it by phone to a lab where a cardio tech/cardiologist could check it immediately. It confirmed I had a harmless skip. For 10 months my heart "stopped" every fourth beat and I had to believe it was ok. Then it went away on its own for no reason. My dr can't tell me why.

Tiggspring, the more I think about this, the more I think this may be something like what I have. I figure if it was serious enough, they would have kept me, or known what it was. My son said the dr. said that maybe I've had this abnormality all along, and just not have known it but I don't remember that. Either way, no serious chest pains since. The dr is on Wed, so I will know for sure then.

It is my bday tomorrow but I have so much homework that I have not done all week while I've been sleeping after work so I don't think I will be doing much .

I hope everyone has a good day. And a good weekend. Happy Halloween everyone.

Stephanie

 

[brighteyes]

I really don't know where else to turn.......

Fibromyalgia is a secondary diagnosis for me. My primary diagnosis is an autoimmune arthritis, for which I have been taking a biologic medication via infusion for the last 3 1/2 years. Over the last year its become documented (as in black box) that a known side effect of the drug is non-Hodgkins Lymphoma. Lordy, that hurt to write.

Over the last 4 months, my pain management doctor, who treats the Fibro and the arthritis pain, changed my fibro medication from Lyrica to Topamax because of the weight gain from the Lyrica. I was so thrilled with the weight loss! At this date, 4 dress sizes - I'm smaller than my 14 year old!!!! I thought it was all from the Topamax/Fibro connection.

Then at the end of September, I came down with what I thought was the flu. No surprise that with my weakened immune system, the Tamiflu didn't work and I had to go on antibiotics, as it settled in my lungs, and I became short of breath, and just taking a shower exhausted me. I've been on antibiotics from September 26th till this past Tuesday. My white blood cells have risen continuously, and I have continued to run a low grade fever, no matter what.

The primary care doctors have kept switching antibiotics, and one suggested that I might be starting peri-menopause (I'm in my early 40's, but had a partial hysterectomy in my mid '30s, so wouldn't know via the usual symptoms). Yesterday, they finally threw in the towel and are referring me to a hematologist/oncologist.

Probable diagnosis: Non-Hodgkins Lymphoma. :scared1

I'm scared spitless. So's DH. We haven't told the girls (14 and 11). Or my parents. I have an appointment at Moffitt Cancer Center on Tuesday for a bone marrow biopsy and as I type this I really can't believe I'm writing these words in relation to me! All I wanted to do was walk and move without pain, and get a little of my energy back. Was that so bad?

Help? I need to go be homework wrangler for a little while, but I'll be back! Thanks!

I am so sorry for you to be going through this. It is all very scary. That is one thing that angered me about going through the diagnosis process. Every step was Oh, we think you could have ________. That's not good, we would have to refer you to someone else if that what this is." I would go home crying and think OMG! What am I going to do?" It is such a traumatic time to be waiting and I am sure, to get a diagnosis that shocking.

My thoughts and prayers go out to you. We are always here to listen to you vent, and be here for whatever you need. Lord knows, I have vented about pretty much my life story in one posting. lol. I was having a moment.

So we are here for you whenever you need support. Sending good vibes your way.

 

[brighteyes]

Hi everyone:

It's only 1pm, I have to work until at least 9pm (I've been here since 8am), and I'm dying already here, EVERYTHING HURTS and I feel exhausted. Each day I'm getting worse and worse. Doctor appt on Monday though, and I'll get a new prescription for Lyrica.

I hate feeling like this; barely making it through the work day and then having no energy to do anything once I get home.


Ok, my pity party is over now. (P.S. Working so late today because I'm in accounting, and each "last-work-day-of-the-month" we have to work late).



Momelie: I'm so sorry to hear of your possible diagnosis. I hope all goes well with your test on Tuesday. Sending good thoughts your way!

I hope even though you had a very rough long workday that it will not affect the rest of your weekend. That really sucks - I would not make it through such a workday at all. I can barely make it through a 7.5 hour workday without having a nap when I get home to make dinner. When you have these long workdays, do you suffer a flare up afterward??


I had a foggy day today and the minute I went to my student placement my boss knew it was a bad day. My face gets swollen when I am having brain fog, I don't understand why?

I came home at four and slept from 5 - 7. I was a bad mom tonight and did not feed my DS before I fell asleep. So we went and got take out when I woke up.

 

[EDuke98080]

I hope even though you had a very rough long workday that it will not affect the rest of your weekend. That really sucks - I would not make it through such a workday at all. I can barely make it through a 7.5 hour workday without having a nap when I get home to make dinner. When you have these long workdays, do you suffer a flare up afterward??


I had a foggy day today and the minute I went to my student placement my boss knew it was a bad day. My face gets swollen when I am having brain fog, I don't understand why?

I came home at four and slept from 5 - 7. I was a bad mom tonight and did not feed my DS before I fell asleep. So we went and got take out when I woke up.

Stephanie have you ever been tested for gluten intolerance/celiac disease? I used to get the brain fog all the time until I stopped eating gluten/wheat. Made the fibro better and the brain fogs gone. It took about a week of gluten free diet and the "clarity" was amazing. Maybe worth trying or keep a journal of what you eat and how bad the fog is. If you see a correlation to wheat products it may be worth getting tested. Just something I found that helped my with that horrible fog. Hope you are feeling better!

Erika

 

[brighteyes]

Stephanie have you ever been tested for gluten intolerance/celiac disease? I used to get the brain fog all the time until I stopped eating gluten/wheat. Made the fibro better and the brain fogs gone. It took about a week of gluten free diet and the "clarity" was amazing. Maybe worth trying or keep a journal of what you eat and how bad the fog is. If you see a correlation to wheat products it may be worth getting tested. Just something I found that helped my with that horrible fog. Hope you are feeling better!

Erika

No I haven't been tested for it, but have sort have heard of it. But don't lots of things contain wheat? I do eat whole grain bread even though I don't eat bread all that much. Lately, I am trying to eat more fresh veggies and fruit.

So how do I know what gluten is? I don't get foggy that often but it seems my whole face is swollen when I have those days.

 

[EDuke98080]

Since your face swells up it sounds like some kind of allergic reaction to something. It could be something other than gluten, which is in alot of things other than bread. It is a protien found in wheat barley & rye. You have to avoid all those things and it includes any product that has it as an ingredient too. It is a very restricted diet so I would tell the PCP about your symptoms and ask about the test, it's a simple blood test before going ona gluten free diet. I found that being on the diet makes me feel so much better as gluten has been found to increase inflamation all over the body if people are sensitive to it. It reduced my pain level significantly.

Hope everybody has a great Halloween!

 

[tiggspring]

Since your face swells up it sounds like some kind of allergic reaction to something. It could be something other than gluten, which is in alot of things other than bread. It is a protien found in wheat barley & rye. You have to avoid all those things and it includes any product that has it as an ingredient too. It is a very restricted diet so I would tell the PCP about your symptoms and ask about the test, it's a simple blood test before going ona gluten free diet. I found that being on the diet makes me feel so much better as gluten has been found to increase inflamation all over the body if people are sensitive to it. It reduced my pain level significantly.

Hope everybody has a great Halloween!

I also swell up but usually it accompanies a crash and I think it is one more thing related to my sleep. Maybe it throws my hormones off. One of these days I'll try glutton free. Its on my long list of things to try. I've been swollen all week and it has been a sucky week. After getting kids off to school I spent 3 of the last four days totaly in bed until pickup time. Friday I managed 2 school halloween parties (2 1/2 hrs) got home and crashed so my kids missed out on a local costume judging and parade. I was so dizzy there was no way I could have drivven and stayed on the road. I managed to stay awake, or should I say concious, until my kids went to bed at 9 but I was in one heck of a stupor and completely out there after.

On a happier note we had a great time trick or treating with the movie Wizard of Oz afterwards. My kids had never seen it so that was a treat!

Brighteyes the heart thing might very well be muscle spasims in you chest wall. thats what I take ativan for. But I never had that skip for 15 yrs and the pain was very different. I am very glad I had the echocardiogram and month of monitoring. I know I have done everthing to make sure I'm ok. I've ignored alot of stroke and heart attack sysmptoms over the years but that one really needed the full work-up. keep us posted.

Momelie I hope you were able to stay in the moment and enjoy your kids tonight. It can be so hard to enjoy life's pleasures when you have a big day comming up. We're all pulling for you here

Indiana Rose Lee How's the job stuff going? Have you started yet?

Hoping all of you had the TREAT of a Pain free Halloween.