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Old 01-10-2013, 11:00 PM   #1591
carrie6466
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So now, in the New Year not only do I have fibro, I have been recently diagnosed with early stage breast cancer. I'm starting to get a bit discouraged. Not by the adhd son, not by the bad spine and sore shoulders, not with the daughter with autism. But this, this this is brining me to my knees. How much more I can handle remains to bee seen. All I do is sleep. Any advice?
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Old 01-11-2013, 01:37 PM   #1592
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Hi everyone

lilpig and carrie6466. Please come here to vent, get support, ask questions, etc. I'm sorry to hear of all of the health problems you have. It seems that fibromyalgia is always made worse when there are other health issues going on. Also, stress is one of the worst triggers for me, and I've read that it's a big trigger for most people.

I wish that I had advice for the sleeping all the time problem; that is my worst symptom right now. Because I also have rheumatoid arthritis, I'm used to being in pain, but the constant fatigue and need to sleep all the time, just gets to me. I feel that I'm wasting time, and my life away, with all of this sleep. And it's not as if I feel any better when I wake up.

Fibromyalgia is one of those "hidden" diseases where you appear totally fine, and a lot of the time it's hard for people to understand how horrible we're feeling. Some people still think that it's not a real thing and that we are just lazy hypochondriacs.

Even when we have family who recognise this as a real disease, it still can be difficult. My DH is great, but often times he thinks that if I just "fight" it, I can be up and about and full of energy and pain-free. I wish that were true!

I'm still spending my days like this (each 24 hour period): 25% at work, 60% sleeping, and 15% tv/laundry/cooking. I guess it could be worse, right? lol

Ladies, I've noticed an increase in symptoms in relation to my hormones, too. For years now I've thought that there MUST be a correlation, but nothing that I've read or heard has ever mentioned this. I think that WE probably know more than the doctors, at this point.

Well I have to go and decide what will get done in the next 3 hours before work. Will I take a shower, or start dinner, or fold laundry? All of these *should* be done, but I don't know if I'll do any of them before I leave for work.

*hugs* to all of you.
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Old 01-11-2013, 04:04 PM   #1593
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Hi guys! finally got up from the stuper I have been in this week. I HAVE BEEN SOOOOO TIRED Finally had the Dr appointment with my PC who kept pushing anxiety/depression last visit. Luckily he never put that in my chart and we had a long chat about how it never been an issue for me and how he is frustrated when he sees things like 48 days of migraine and cant help. It was a very good visit and for the most part I'm stable which is a bit of an oximoron for us isnt it? I might try anti convulsives for the migraines in June. Any luck with that here?

Quote:
Originally Posted by lilpig View Post
Hi, I am a regular browser on the disboard.(mostly reading) I have been going through health issues for the last 5 years. I have been diagnosed with atypical migraine, nocturnal epilepsy and yesterday I was diagnosed with fibromyalgia.
Right now am having a hard time wrapping my head around it in general because I do not know much about it. I only know what some peoples thoughts of it are. I came home and started reading about it was telling my husband. We call our oldest in to tell her, (at this point I am waiting to tell the other two ) and when she asked what is that. My husband said in my opinion unkind things. I am not hear to bash him. So I will not put them here.
So right now I feel confused, unsupported, and scared. I called my mom she did tell me that my grandma(passed away) and aunt had / have it. I knew my dad has it (its his mom and sister).

I just thought what better place to find people to understand and give helpful words then here. And when I came to the disAbilities section this was the first one to come up
Lilpig,

You are not alone! Most of have gone through this with family and/or Drs at some point. I began telling people when they asked what FMS is that they should think "MS" or lyme disease. I have had good luck with those descriptions. Have you been tested for lyme? If not this is definately something to consider if you live in North East. MS and Lupus should be ruled out too. I say this only because no one wants to go years with this diagnosis only to find out they have something that can be treated.

If you read through this thread you will see we all have had days where you cant imagine your body could do so many odd thisngs to you. Evryday is an adventure. Please check out past posts and ask as many questions as you want. You will find that the people here are the best. Very understanding and full of pixie dust.. People with FM are like snowflakes no two are alike. I cant tolerate medications and cant work but have been able to get better with suppliments, meditation and alternative techniques. Sometimes I exersize sometimes not. Learning to deal with these diseases is realy about knowing your body and going with the flow. Our symptoms tend to floow the weather and the stress in our lives.

Please come here to vent. Most of us have no place to go with our bad days. Everyone here gets it. Since Tocherie started it this thread has not been judgemental or unkind and those things are just not tolerated here. So chat away and if you think something is TMI for the thread PM one of us. We can keep secrets around here


Quote:
Originally Posted by carrie6466 View Post
So now, in the New Year not only do I have fibro, I have been recently diagnosed with early stage breast cancer. I'm starting to get a bit discouraged. Not by the adhd son, not by the bad spine and sore shoulders, not with the daughter with autism. But this, this this is brining me to my knees. How much more I can handle remains to bee seen. All I do is sleep. Any advice?
Carrie

I'M SOOOO SORRY!

My advise is unusual for us here. CRY yes...give yourself permission to be really sad you have earned it. Then pick yourself up and make a plan. Sometimes when I get a list in frount of me I can think better. I remember when DH1 got the 2nd diagnosis of cancer and we knew it was bad just what a kick in the gut it was. Cancer is a blinding diagnosis. it take awhile to soak it all in. Please keep us updated. Rember that while this is a big challenge there is alot that can be done today but it will take time.

Quote:
Originally Posted by SeaSpray View Post
Hi everyone

lilpig and carrie6466. Please come here to vent, get support, ask questions, etc. I'm sorry to hear of all of the health problems you have. It seems that fibromyalgia is always made worse when there are other health issues going on. Also, stress is one of the worst triggers for me, and I've read that it's a big trigger for most people.

I wish that I had advice for the sleeping all the time problem; that is my worst symptom right now. Because I also have rheumatoid arthritis, I'm used to being in pain, but the constant fatigue and need to sleep all the time, just gets to me. I feel that I'm wasting time, and my life away, with all of this sleep. And it's not as if I feel any better when I wake up.

Fibromyalgia is one of those "hidden" diseases where you appear totally fine, and a lot of the time it's hard for people to understand how horrible we're feeling. Some people still think that it's not a real thing and that we are just lazy hypochondriacs.

Even when we have family who recognise this as a real disease, it still can be difficult. My DH is great, but often times he thinks that if I just "fight" it, I can be up and about and full of energy and pain-free. I wish that were true!

I'm still spending my days like this (each 24 hour period): 25% at work, 60% sleeping, and 15% tv/laundry/cooking. I guess it could be worse, right? lol

Ladies, I've noticed an increase in symptoms in relation to my hormones, too. For years now I've thought that there MUST be a correlation, but nothing that I've read or heard has ever mentioned this. I think that WE probably know more than the doctors, at this point.

Well I have to go and decide what will get done in the next 3 hours before work. Will I take a shower, or start dinner, or fold laundry? All of these *should* be done, but I don't know if I'll do any of them before I leave for work.

*hugs* to all of you.
Glad you found the energy to post! I cant imagine working. This week getting kids to school and then activities 6hrs later was a challenge.

Sending pain free vibes and pixie dust to all
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Old 01-11-2013, 10:22 PM   #1594
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Thank you so for the warm welcome

Carrie, I am so sorry. I can't imagine how difficult this is for you.

I am not good yet at the quoting yet sorry.

I have had multiple tests and a few mri's . I changed Doc's at one point because I thought I was being treated poorly. She has checked ( I believe ) for other causes.

I am on topamax and deseryl for the migraines, I am on keppra for the seizures and lyrica. I am also on flexeril as needed but I try not to take it.

I am so useless right now. I work and have three kids 17, 14, 10. When I come home all I want is to sleep or watch tv in "my spot" so at least im in the "awake"

Thanks for being here
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Old 01-14-2013, 07:58 AM   #1595
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Quote:
Originally Posted by lilpig
Thank you so for the warm welcome

Carrie, I am so sorry. I can't imagine how difficult this is for you.

I am not good yet at the quoting yet sorry.

I have had multiple tests and a few mri's . I changed Doc's at one point because I thought I was being treated poorly. She has checked ( I believe ) for other causes.

I am on topamax and deseryl for the migraines, I am on keppra for the seizures and lyrica. I am also on flexeril as needed but I try not to take it.

I am so useless right now. I work and have three kids 17, 14, 10. When I come home all I want is to sleep or watch tv in "my spot" so at least im in the "awake"

Thanks for being here
lilpig

Don't worry about you mistakes here. I do my best to fix mistakes in preview but don't go back to fix them here once I post. It takes too much time and energy to do that and everyone here gets it and just laughs it off. I've actually got flamed on other threads for mistakes...like they don't have anything better to do.

Do you have seizures or just use the drugs for migraines? Any side effects?

Well here I am trying to keep my resolution. on my phone so no creative smilies . Got kids/hubby off to school now off to bed. Last few weeks I've been sooooo tired. Up an hr then in bed for 40min then up 40 min back to bed and sleeping in coma type sleep for 3-4hrs. Get them all off but not much else. I can fight off migraines and pain but In 18 yrs never figured out how to outsmart fatigue. I fall asleep sitting up. Lilpig, a few years back I was at a girl scout camp at local museum. I was sitting on top of a table and the next thing I knew I was asleep sitting up with nothing supporting my back! Yep just sleeping in middle of table LOL. So you are not alone in extreme fatigue.

Hope everyone had good weekend.

Sending pain free vibes and pixie dust to all!
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Old 01-14-2013, 08:36 AM   #1596
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Hi! I'm Ashley! I'm 25 and I was diagnosed with fibro by my rheumatologist last Friday. I was diagnosed with Lupus almost a year ago. She has given me Flexaril to take before going to bed. Does anyone have any experience with this?

I'm glad I found this thread!
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Old 01-14-2013, 08:52 AM   #1597
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Quote:
Originally Posted by ashmarie06
Hi! I'm Ashley! I'm 25 and I was diagnosed with fibro by my rheumatologist last Friday. I was diagnosed with Lupus almost a year ago. She has given me Flexaril to take before going to bed. Does anyone have any experience with this?

I'm glad I found this thread!
Hi Ashley: WELCOME!

I'm a little confused by diagnosis. Over the years Lupus was a rule out diagnosis because many of it symptoms were similar and by definition you would have fibro symptoms. where fibro is having symptoms without other reason like ms/lupus/lyme. Maybe the drs are now diagnosing FM simply by symptoms. I know my DH's rheumy diagnosed him with lyme induced fm maybe more and more Drs are doing this. Either way crazy symptoms are the same.

As far as Flexeril I have been on it for years. It really knocks me out so I usually cut it in half and make sure DH is able to get up with kids etc. Its my emergency muscle relaxer. I usually take ativan for muscle pain as it is less exhasting and a shorter term effect. which of course means pain comes back faster too . My advice is take it slow on flexeril til you know how it effects you. If you feel foggy next day even if 24 hrs after taking pay attention and be sure its Lupus/FM not side effect of Flexeril.

Hope this helps!
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Old 01-14-2013, 10:21 AM   #1598
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Sorry for the confusion! I was diagnosed with lupus last year, that is believed to have stemmed from a bad bad case of mono in 2006. I have been seeing a rheumy since then. Last Friday I went in because I'm flaring, and after doing some exams she believes that I also have the fm. This came as a total shock to me, but it does seem to make sense with my symptoms.

I feel like I have lost control of my body the last year. Even I don't know what is going on with it. :/


Thanks for the info about the flexiril. She gave it to me because I'm constantly exhausted. I could fall asleep and sleep 20 hours and go right back to sleep. She thinks that this is because I never get into a deep sleep, and that this could be causing more joint pain due to my muscles and joints not recovering at night? Who knows. I need to get my prescription filled tonight, maybe I will just stick with a 1/2 of one.
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Old 01-14-2013, 11:00 AM   #1599
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Quote:
Originally Posted by ashmarie06
Sorry for the confusion! I was diagnosed with lupus last year, that is believed to have stemmed from a bad bad case of mono in 2006. I have been seeing a rheumy since then. Last Friday I went in because I'm flaring, and after doing some exams she believes that I also have the fm. This came as a total shock to me, but it does seem to make sense with my symptoms.

I feel like I have lost control of my body the last year. Even I don't know what is going on with it. :/

Thanks for the info about the flexiril. She gave it to me because I'm constantly exhausted. I could fall asleep and sleep 20 hours and go right back to sleep. She thinks that this is because I never get into a deep sleep, and that this could be causing more joint pain due to my muscles and joints not recovering at night? Who knows. I need to get my prescription filled tonight, maybe I will just stick with a 1/2 of one.
Ashley,

I was not confused by your statement but by the Drs assessment. I think the Drs have just changed how they are diagnosing Fm. This happens in the med and psych field both of which I worked in before getting sick.

As far as the flexeril helping with fatigue I have never known anyone that used it for that UNLESS exhaustion was due to severe muscle spasms causing sleep loss. Extreme sleepiness is one of those incredible unexplainable symptoms of FM. I actually am diagnosed with Chronic Fatigue and FM. The first several years I averaged 16-20hrs of sleep a day! Now I have bouts where that happens but not many. The key for me was stopping the meds (I tried more than 20) and going to supplements. Flax oil for fatigue (they thought I was crazy 15 yrs ago now most Drs prescribe it for something) vitamin D, B12 and several other things. If you havent had your D levels checked you should many of us are D deficient. I have also used melatonin to help when my sleep is off. sometimes this helps too. I hear that its in dark cherry juice so you can try that before bedtime or you can take the supplement. Whatever meds/suppliments you take be careful and take small doses and go up slowly. Many of us here are sensitive to the craziest of things. I took flaxseed oil 2x a day for 6 months before i noticed a difference.

the biggest thing that help my energy is managing my time/stress. I explain it to my kids like this. Everyday I wake up with so many energy dollars. Sometimes 10 sometimes 2 . Every time I do even the smallest of things like picking up junk off the floor I use dollars so If I waste them on fighting then I cant watch a movie later that night. Everything you do, talking on phone, chores, etc has a price. The trick with FM is learning to assess upon waking how many dollars you have and pacing how you spend them. Do less than you think you can or you will inevitably do too much and have less the next day. I cannot fight the fatigue...it is a sure fire way to get worse. It took me two years to even come close to getting the fatigue thing down. Its hard not to do what you want when you want but with fatigue its vital. I kept a journal the first few years so I could assess my meds, supplements and symptoms because I had all the chronic fatigue symptoms and FM symptoms at once. I constantly had heart attack and stroke like symptoms, was in er for evals off all types. My husband could not touch me in any way not a hug or handholding and I left my home only 5 times in a year. All this at 27! My body was seriously out of control. When I stopped fighting, stopped looking for a medical fix, began meditation, visualization, relaxation techniques etc I did much better. I went into remission while pregnant and all the things I learned helped me keep some assemblance of a life ever since. Its a very tricky balance but I drive again, get my kids to school and activities and sometime get the chores done LOL. I miss working terribly but for me I must maintain control of the balance and demands of a job would put me back in bed Everyone one here has a different experience with meds etc but if you type in fatigue in the search of this thread it is one of the universal things we have trouble managing.

Well I think I will shut up now! LOL you can now see why I have that saying near my user name
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Old 01-14-2013, 05:40 PM   #1600
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Hello ashmarie06! I am also on Flexeril I find that I only take it when I have a lot of "spine"and my ticking seems out of control. ( I have muscle spasm in my legs and face...well almost every where but they are the worst spots)

I do have migraines but ..most of the time I do not have pain I have other symptoms like flashing lights, vision issues, speech problems and confusion. I do get pain I can't really explain it.

My confusion though varies, its funny but not.. I have "normal" confusion now that I just have come to terms with. People say I have a look on my face that says "HUH?!" I just say its my thinking face. Then I have my migraine confusion and that looks more like y I hide from the world when I am like that. (Thankfully it doesnt happen that much.) Then have the I don't know what I am doing..how to use a key or putting things away.

I am on keppra for nocturnal seizures (sleep ones) and it does have the bonus of helping with migraines.

It is awesome to have people to talk to. I know I should take supplements but I dont know what lol.

Do you guys have food and other item sensitivities? I do! It seems like sometimes I know and then POOF!!!! something bothers me. I mostly have problems with food and smells. This "round" I am on right now (do you go between worse and betterish? I heard flare mentioned) I should have known was coming because I kept having issues with food.

Okay sorry to talk your ears off...Talk to you soon!!! Did I mention I am grateful!
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Old 01-14-2013, 06:26 PM   #1601
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Thanks, ladies. I was so feeling so overwhelmed when I wrote that. I've been getting all kinds of tests and am now just waiting for all the results. I have an appointment to go back at the end of the month. The surgeon's office told me today to make sure that I bring all the films, results and everything I got from all my tests with me to my appointment because they are going to most likely set a surgery date at that appointment. I have a ton of stuff because I had to switch surgeons mid-stream due to some issues with the one who did the first biopsy.



Quote:
Originally Posted by tiggspring View Post
Hi guys! finally got up from the stuper I have been in this week. I HAVE BEEN SOOOOO TIRED Finally had the Dr appointment with my PC who kept pushing anxiety/depression last visit. Luckily he never put that in my chart and we had a long chat about how it never been an issue for me and how he is frustrated when he sees things like 48 days of migraine and cant help. It was a very good visit and for the most part I'm stable which is a bit of an oximoron for us isnt it? I might try anti convulsives for the migraines in June. Any luck with that here?




Carrie

I'M SOOOO SORRY!

My advise is unusual for us here. CRY yes...give yourself permission to be really sad you have earned it. Then pick yourself up and make a plan. Sometimes when I get a list in frount of me I can think better. I remember when DH1 got the 2nd diagnosis of cancer and we knew it was bad just what a kick in the gut it was. Cancer is a blinding diagnosis. it take awhile to soak it all in. Please keep us updated. Rember that while this is a big challenge there is alot that can be done today but it will take time.



l
Quote:
Originally Posted by lilpig View Post
Thank you so for the warm welcome

Carrie, I am so sorry. I can't imagine how difficult this is for you.
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Old 01-14-2013, 06:52 PM   #1602
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Quote:
Originally Posted by SeaSpray View Post
Hi everyone




Ladies, I've noticed an increase in symptoms in relation to my hormones, too. For years now I've thought that there MUST be a correlation, but nothing that I've read or heard has ever mentioned this. I think that WE probably know more than the doctors, at this point.

:
My symptoms definitely worsened, first with peri menopause and then menopause.. No doubt, there IS a connection.

We were out of the country last month and my symptoms were drastically reduced. I know, stress plays an important role, but I noticed a big difference with my diet too. Our food is so full of chemicals. I firmly believe, the toxins cause more fatigue and pain.
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Old 01-14-2013, 06:54 PM   #1603
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Originally Posted by carrie6466 View Post
So now, in the New Year not only do I have fibro, I have been recently diagnosed with early stage breast cancer. I'm starting to get a bit discouraged. Not by the adhd son, not by the bad spine and sore shoulders, not with the daughter with autism. But this, this this is brining me to my knees. How much more I can handle remains to bee seen. All I do is sleep. Any advice?
Oh, my...

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Old 01-14-2013, 09:26 PM   #1604
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Wow, I really ought to visit here more often, I learn so much. I can't imagine how many of you manage with young families. Mine are grown but still at home. At least they are helpful, for the most part. I'm sorry to hear of your diagnosis Carrie.

I just wanted to comment about the menopause issue. I began "falling apart" to a major degree when I was through early menopause. About 50. I remember in my 20's I had been taking birth control pills and started having migraines. I stopped them and didn't go back on them. In my early 40's I tried taking premarin and provera for my menopause sx and had a migraine for nearly 3 months. It didn't respond to anything. I also had elevated blood pressure from the hormones and the headache persisted after I stopped them. Antidepressants helped my menopause sx very well instead. A chiropractor got rid of the headaches. I went to him after PT couldn't fix my messed up shoulder upper back pain. He did it in one visit but I returned for followup for a few months. Headache gone, pain gone.

I probably should consider chiropractic again to see if it could help.

BTW, all my allergy, skin irritations, sensitivities began when I had my kids. Prior to that I had no issues with my skin. I think hormones have played a big roll in my life and wellbeing.

I am still having fatigue and haven't had my folllow up blood tests yet for my low white blood cell count. I was off my methotrexate for 2 weeks and it was the worst pain/misery I can remember. All that discomfort just crashed on me and even moving my fingers was too much. I had my dose last week and tomorrow and have already had 75% improvement. Thank goodness.
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Old 01-14-2013, 10:48 PM   #1605
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Quote:
Originally Posted by lilpig
Hello ashmarie06! I am also on Flexeril I find that I only take it when I have a lot of "spine"and my ticking seems out of control. ( I have muscle spasm in my legs and face...well almost every where but they are the worst spots)

I do have migraines but ..most of the time I do not have pain I have other symptoms like flashing lights, vision issues, speech problems and confusion. I do get pain I can't really explain it.

My confusion though varies, its funny but not.. I have "normal" confusion now that I just have come to terms with. People say I have a look on my face that says "HUH?!" I just say its my thinking face. Then I have my migraine confusion and that looks more like y I hide from the world when I am like that. (Thankfully it doesnt happen that much.) Then have the I don't know what I am doing..how to use a key or putting things away.

I am on keppra for nocturnal seizures (sleep ones) and it does have the bonus of helping with migraines.

It is awesome to have people to talk to. I know I should take supplements but I dont know what lol.

Do you guys have food and other item sensitivities? I do! It seems like sometimes I know and then POOF!!!! something bothers me. I mostly have problems with food and smells. This "round" I am on right now (do you go between worse and betterish? I heard flare mentioned) I should have known was coming because I kept having issues with food.

Okay sorry to talk your ears off...Talk to you soon!!! Did I mention I am grateful!
Hi! I do have random smell aversions. But they do change! Right now it's vanilla anything. Buy between the lupus and the fibro I'm flaring. Which has a lot to do with it, I assume!
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