NeuroTalk Support Groups - Sick and tired of being sick and tired.......MG sux!

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I just have a quick comment, about Lyrica and people here with MG.

There is a side effect, that is being reported more as a post
marketing event, of SHORTNESS of BREATH or inability to breathe leading to ER intervention. For MGers this is not a side effect to have. So remain vigilant about it.

This is a link to this side effect as reported to Medwatch FDA for Lyrica...

http://sideeffects101.com/drug-side-...a-dyspnoea.htm

Thanks for the link, but for some reason my shortness of breath is unchanged whether or not I take Lyrica. It is a very big concern for others though.

Hi (((Erin)))

thinking of you being in pain, it really does suck!!!!!!
I to suffer from pain that no one can explain, I had one Dr say it was due to my lack of exercise, which was kind of wierd, cos I've had the pain from around the time when I was diagnosed, and very fit!!!!
Now I just can't be bothered mentioning it anymore, cos they all just look at me like I'm some weird woman with a too tight bra(he he a reference from another thread)
I wish I had some answers for you, but I don't, but if you find some let us know!!
take care
Kate

Hi Kate!:hug:

So I'm not the only MG'er with unexlained pain........seems like there are quite a few of us that suffer all the time with SOMETHING! :(

Your docs have no idea whatsoever is causing it either? This is just plain weird! I told my neuro over and over that I think it may be Fibro, but to no avail. He usually is the best and I do know that He KNOWS I'm in pain but so far we haven't gotten rid of it.

I cannot wait to get a 3rd opinion on my back and start PT!

Mike has friends coming in this weekend for some football thing so I'm going to TRY and get stuff done, - we'll see how it goes!

How are YOU doing?

love,
Erin:hug:

Hi (((Erin)))

thinking of you being in pain, it really does suck!!!!!!
I to suffer from pain that no one can explain, I had one Dr say it was due to my lack of exercise, which was kind of wierd, cos I've had the pain from around the time when I was diagnosed, and very fit!!!!
Now I just can't be bothered mentioning it anymore, cos they all just look at me like I'm some weird woman with a too tight bra(he he a reference from another thread)
I wish I had some answers for you, but I don't, but if you find some let us know!!
take care
Kate[/QUOTE]

Hey Simon! Still getting your IV IG? Are you feeling any better?

Thank you so much for the prayers - they mean so much to me! I know there is a reason for all of this - just have to hang in there and let the dr's know what is going on.

Don't you LOVE this cooler weather?

Love,
Erin:hug:

Quote:

Originally Posted by TxSimon (Post 582220)

Erin,
I feel for you and the pain. I am praying that the pain eases and you are better! You deserve a break! Keep venting all you want, as we completely understand. Keep us informed as to what is happening and we will continue to pray.
Huge Massive Hugs to you,
Simon

Hey hon!:hug:

Fibro is what I keep telling my docs........but they don't "know" yet......I am going to offer to stay the night @ their place and see how they like being woken up @ all hours of the night to my crying......LOL!

I've just got to hsve another opinion to see what is going on - for one dr to tell me one thing and the other to tell me the opposite is par for the course, but I'm inclined to believe is the back guy - after all, that is his stock in trade!

How are YOU doing?

Love,
Erin:hug:

P.S. THanks for the prayers! Know that I am sending some your way, too!

[QUOTE=dog lover;582263]Hi Erin,
I wish there was something I could say to make it easier for you right now. Just know that you are in my prayers and as frustrating as it is waiting for an answer there HAS to be a reason for your pain. I almost hesitate to mention this because I'm sure they have already checked for this but is it possible it is Fibromyalga? I know alot of people with auto immune diseases battle Fibro too.

Hey hon!:hug:

I don't think it is crazy @ all! All of these darn meds have some really nasty side effects!

I also do not understand why we can't take Aleve but morphine is A-Ok- other than the hosp has something on hand in case we have a reaction!

Those lidocaine patches are just NASTY! They are the only thing that really mess with my breathing - that was so scary! :eek:

I have such a busy week and hope to get it all worked out! We'll see how that goes! i've also decided to put up my decorations waaaaay early this year - Mike has a xmas party every yr for business and I don't want to stress out again!

Medical pot sounds GREAT! I wonder if my Dr would approve it....I never cared for the stuff when I was younger, but then again I wasn't in pain!

how are YOU?

Love,
Erin:hug:

Quote:

Originally Posted by Joanmarie63 (Post 582271)

:hug: ERIN :hug:

OK, you all are going to think I am crazy here, but.. I think it is our medication that is causing the pain Erin. My Dr said it was nerve problems, then said it was fibro, but I think it is side effects of the medication.

If you look it up as I did some of the side effects can be pain. I did notice that since starting back on mestinon my pain has increased. Sometimes my left leg won't even work right.

I have noticed that the only thing that helps my pain a bit is "Aleve" Dr really doesn't want me taking it but has no problem giving me percocet, I prefer the Aleve. I also have the lidicane patches but hey I can't cover my entire body with them, besides they didn't work for me either.

Ask your Dr about the side effects, I know it doesn't make sense to many of you but me being so sensitive to medications it makes sense to me :)

I am seriously thinking of asking for medical pot, {to cook with} just to see if it would work

Hey Jana! :hug:

I don't think that is off the wall @ all!:D

I will ask my dr about it on Wednesday! Anything to get rid of this pain!

How are you feeling?

love,
Erin:hug:

Quote:

Originally Posted by jana (Post 582337)

Erin, I have an off-the-wall suggestion. I had "discomfort" (I hate to call mine "pain" because it was NOT as bad as what you described) in my neck, shoulders, hip girdle muscles, lower back, and above my knees. Other MGers told me that they had similar pain/discomfort from time to time. During exacerbations, I would take pain pills -- at other times, Tylenol would suffice. About a year ago, I started taking Topamax for my migraines. Withing a couple of days, my muscle "discomfort" (and my headaches) DISAPPEARED!!! I have a few muscle "twinges" from time to time if I over-do -- but, NOTHING like I had before.

I did some research -- Topamax is being used (experimentally, I think) for the relief of Fibromyalgia and other types of nerve pain. As far as I know, I do NOT have Fibro. Maybe????????? It might be worth asking. Topamax recently went generic. I started out at 25 mg.

Hi Ally!:hug:

You are so sweet to be thinking of me when you have so much going on - thank you for being such a kind hearted person!:hug:

You watch Mystery DX too? That show is AWESOME but scares me! LOL! For a while there, I was the mystery dx! LOL!:D

I will ask Dr. Pinkston who she recommends.....she is my PCP and a very sharp lady!

How are you feeling?

Love,
Erin:hug:

Quote:

Originally Posted by bluesky (Post 582339)

Erin, it's just breaking my heart thinking of what you're going through.

I can imagine that chronic pain would grind a person down very fast. And then add to that the fear of not knowing. Have you tried going to a physiatrist? They're doctors who specialize in diagnosing the causes of pain and treating it (among other things). I know that 'cause I'm addicted to watching Mystery Diagnosis :)

This probably won't help you at all, but sometimes when I'm really sick I'll just get all over pain and stiffness suddenly. I can't even move, it hurts so bad. And then it goes away after a couple of days. Probably due to what Alice was saying, I'm just overworking weak muscles.

I know it's got to be hard to get through each day. Somebody's got to help you! The squeaky wheel gets the grease, so squeak your loudest squeaks!! Keep pushing until you get some relief.

I'm thinking of you!!!! Hang in there. :hug:

And ya, MG SUX!!!!
Ally

Hey Nicky!:hug:

It was wild you brought up my thyroid, b/c Dr. I just told me that while my readings show I have an overactive one, the opposite is true - does that make sense?:confused:

My blood work is all over the place - I was perfectly normal until MG struck and then EVERYTHING went crazy! This damn disease is giving me fits!:mad:

How can I be "normal" one day and then have everything screw up me?
How can any of us?

How are you?
Love,
Erin:hug:

Quote:

Originally Posted by Nicknerd (Post 582360)

Hey Erin,

I'm sorry you're going through such pain! It sounds bad, and I remember a time when I was in pain like that...I used to get horrid joint pain in my wrists, knees, and jaw...The only thing that ever seemed to help was sleeping, for some reason...and sleeping a lot! I used to mainly get it at night...My hands would be 'stuck' in claw positions because the pain was so excruciating...I couldn't turn a door knob...I would have to use my forearms..I felt like a tyranisaurus rex sorta...lol:(

The prednisone, and more sleep (not working right now) seem to help...I would get muscle pain too...The extra sleep would help with that a bit too...

I hate to add another variable to the mix because it makes everything so complicated...but I've always had my thyroid monitored because I have antibodies attacking it...My TSH has always been 'normal' apparently...Well, I went to see an endocrinologist yesterday because of the prednisone diabetes and to schedule a bone scan...He said that my thyroid is failing...It's not quite there yet, but will be soon (borderline)...He said that bad thyroid function can cause muscle and joint pain and even muscle weakness plus all of the other things it can do (hair loss, dry skin, weight gain, fatigue, menstrual problems, etc.).

I started looking into it a bit more...In the past, my rheumatologist thought that I might have fibromyalgia (before MG diagnosis), but I didn't have all the trigger points...Anyway, I read that it's very common for people with Fibro. to have poor thyroid function, so in essence, they're sorta misdiagnosed...Also, what's 'normal' in terms of TSH varies from lab to lab, and even from person to person...SO a person can have normal values, but still not feel well because of their unique needs...There's also something called 'central' hypothyroidism which a lot of people with fibromyalgia are found to have...Anyway, I'm sure the doc. keeps an eye on your thyroid, but what are your levels at? If your thyroid's not working right, it can cause a lot of pain in the muscles and joints...

Anyway, I hope the docs. get to the bottom of it all! I also noticed that you weren't posting much and was feeling worried! Get well soon! :hug: