Sick and tired of being sick and tired.......MG sux!
 

Erin, I am so sorry you are in such pain. It is boggling my mind. There has to be something they can do for you. Have you discussed this with an internist? What about a nerve biopsy? I know, invasive and painful.

It's so odd. Is the pain all over the place? Like how the flu or a high fever feels? If you press on your muscles, do they hurt? I have to wonder what the mechanism is if Fentanyl isn't even working. Has anyone tried Lidocaine patches to test to see if it is nerve-related? It's not a 100% test but may give your neuro a clue. You can't overuse them with MG, it would be dangerous. But maybe a "test" on one area to see. Ask your neuro about that.

Someone should be able to figure this out for you. Pain needs to be taken care of. It is EXHAUSTING. I know people who live with chronic pain and they are amazing, in my view. It's so very hard.

I wish I could do more. I wondered why you were a bit quiet lately. Does anything help? Again, I'm very sorry you're hurting.

Annie

Erin, I am so sorry you are suffering like this. There has to be a reason for the pain...they just haven't found it yet. You have been through so much. I sure hope you get some relief soon. Take care and know we are all pulling for you.;)

Big Hugs,
Pat

Hi Erin!

Glad you vented!! May not change anything - - but sure feels good at the moment!!! I am so sorry that you are having such pain. It's just not fair.

Don't let the docs off the hook - -pain is a vicious, exhausting circle as you know and you do not deserve to live with it.

Hope you have some better days real soon!!
Sue

I wish there were some words I could say that would relieve your pain and discomfort.
You are a constant positive personality with warmth and sincerity, I wish you nothing but relief and just a stinking break from all this crappy stuff.
youre a sweetheart, and you certainly dont deserve constant pain.

So sorry to hear that you are not feeling well Erin. I am praying for you.

Blessing for you,
Christy

Hi Annie!
 

Hey sweetie! THanks so much for your kind words! I DID have all over pain until I started on the Neurotin (sp?) - it had spread to my hands and arms - just everywhere. It was a deep, burning, to the bone pain that woke me up crying. Now that I am on the Neurotin, it has relieved that pain, but my back pain has just gotten worse and worse. It has gotten to the point that walking a few feet causes tears. :(
I have tried stretching, yoga, massage, everything under the sun and it will not go away. At this point the only thing that numbs it for a brief period is pain meds - norco to be exact.
This is no way to live. I had Dr. I give me another nerve test but he found only minor problems - the other guy (a specialist) found tons of problems, but I need another opinion.
It could be OB/GYN related. I don't know. What I do know is that this cannot continue. I can't take it!:(
I think it is the unknown that scares me....you know?
I need to be able to get around on the days that I feel well but I just can't. I don't know what I would do if I didn't have pain meds, but have to find the SOURCE of the pain in order to relieve it.
I have tried the Lidocaine patch, but it really messes with my breathing.
My back brace gives me a few minutes of relief..but only a few.
This is really scaring me.:(
I also factor in my enormous weight gain..my body simply wasn't meant to carry around this much fat. I am now 170 lbs. My normal weight is around 110-125, however I can;t lose the weight unless I am mobile - something I am NOT now.
Sorry for going on and on......
At this point I am willing to take ANY test given to me - anything to figure this out.
Erin:hug:

Hi Pat!
 

Hey hon!:hug: Thank you - you are so sweet! How are you doing?

I know there is something going on ~ they just have to figure it out before I go bonkers! :eek:

I have become a shell of my former self. It is just so upsetting to feel so helpless. MG is bad enough without the added pain of chronic back pain......

Enough whining.....how have YOU been? Your hubby?

Love,
Erin:hug:

Hi Allen!
 

Hi Allen! Thank you so much!

If you are a praying person, please do so for me. I know that something is wrong, but don't know what it is quite yet!

I just want to feel better to take care of my fellas....I hate being a burden!

How are YOU feeling?

Love,
Erin:hug:

Hi Sue!
 

Hi Sue! :hug:

You are soooo right about being able to vent! I just miss my former self!:(

I see my PCP on Wednesday and have PT on Monday so maybe that will clear up a few things. I truly wonder if this is OB/GYN related. I have always had problems in that dept!

I am going to BEG for stronger pain meds so I can get through the day - all in hopes of retaining a sense of normalcy and losing weight.

How are you feeling?

LOve,
Erin

Hi Christie!
 

Hi hon! :hug:

Thank you for the prayers! Maybe God will help the docs figure out what on earth is going on.

How are you doing?

Erin:hug:

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

Sick and tired of being sick and tired
 

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. One other thing that crosses my mind is the Pred. I was started on Pred Fri and the list of side effects is down right scary. Bone pain is one of the side effects listed. I know both of these seem like obvious things the Drs. would check for but when dealing with so many different Drs. I think sometimes things get overlooked. Hopefully when you see you doc this week you will get some answers.:hug:
Kendra

: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

pain in MG
 

the possible reasons for pain in MG are-

1. inadequate posture due to muscle weakness.
most people in the modern world don't hold their body in the right way. you can just watch the way people sit next to their computer, or walk in the street, or run, very frew of them will have the nice and swift movements that you will see in a normal child.
this is even worse when you have some muskulsekletal problem. it could be weakness of your muscles or problems in the joints or even (you may find it surprising) an ingrowing toe nail.
physicians don't pay much attention to that, and they themselves don't take very good care of their own body in that sense. how many times have you seen a doctor or nurse bending down to a patient instead of taking a chair and sitting next to him?
learning to use your muscles in the right way, is not trivial and requires a lot of work, but if you do it, then you can learn how to take the pressure off from your msucles and joints.
I don't know if that is the cause of your pain, but could contribute.

2. decreasing the dose of steroids- many people experience some degree of muskuloskeletal pain when their dose of steroids is decreased, and in some it may be quite severe, but it does improve with time.

alice

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.

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 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:

Erin,

I hope you find something that works for your pain. Lots of good thoughts from everyone on here. I have very little pain...I wish I could take some of yours from you. :hug:

Hope you feel better.....
 

Hi Erin,

I know the feeling of being in CONSTANT pain and no it isn't fun. Have you gone to a rheumatologist yet? I have and they diagnosed me with fibromyalgia. I have been prescribed Lyrica and it does help the pain but since I am sensitive to all types of medication Lyrica makes me emotionally sensitive to the point where I am crying over nonsense. So I have to take it in moderation.

Take care of yourself and I hope you feel better soon,

Stephanie

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!
 

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]

Hi Simon!
 

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:

Hi Kendra!
 

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.

Hi Joanmarie!
 

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:

Hi Jana!
 

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:

Hi Ally!
 

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:

Hi Nicky!
 

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:

Hi Desertflower!
 

Hey honey!:hug:

Thank you for your kind words - you are so sweet to me!

Now tell me - how are YOU feeling?

Love,
Erin:hug:

Hi Stephanie!
 

Hey hon!:hug:

HOW do you deal with it? I feel like I'm going out of my mind some times!

I truly believe pain can make people do crazy things!

My insurance will not cover the cost of Lyrica right now - only Neurotin. It has helped with the other pain, but this back business is a whole different story!:eek:

How are you doing today?

Erin:hug:

OMG...Erin...I had a feeling that was what was going on with you! That means that you DO have 'central' hypothyroidism which has very similar symptoms to fibromyalgia...It means that it's coming from your pituitary gland! Your TSH was low, right, and your T4 is also low, or something like that? Yes, I think that this is why you're in pain... Keep up with the doc. on this one!

I know what you mean, Erin! God...I mean, I did have a lot of pain before the MG and tiredness, but it's the thymectomy that seems to have made my blood work absolutely crazy! My CBCs have always been superb, along with my other tests...Removing the thymoma seems to have made me sorta worse...Maybe my somewhat working thymus was keeping the other autoantibodies I have at bay...Who knows...

Let's just all get better really soon, and ask your doc. about your thyroid readings and your pain...I think this might be the culprit!

I hope you feel better soon! :hug:

Are you saying that your doctor knew you were HYPERthyroid and didn't do any more testing?! You have dry eyes, right? Grave's disease is very common to occur along with MG. It would suck to have something else wrong but it's better to know.

http://www.mayoclinic.com/health/gra...CTION=symptoms

Time for a sit down with your primary doctor. And get a referral to an endocrinologist ASAP.

Annie

Hi Erin,

Well, the way I deal with it is by being alone in bed. It is really weird to everyone else but for me it works because if I am around people I am going to be mean and will probably make somebody cry, lol. So instead of doing that I just take a Goody powder or 2 aspirin and just relax.

I also have aromatherapy heating pads that I spritz with water and warm up in the microwave.

If I can't relax at home I will go by Starbucks and get a Caramel double-blended Frappacino. For me comfort foods always work!

It sucks that your insurance does not cover it, but I hope these suggestions help.


Take Care,

Stephanie

Hi Annie!
 

Hi Annie! THe way it was explained to me is that my blood work shows an underactive thyroid even though it "reads" an overactive one - does that make any sense to you?:confused:

Apparently I'm a freak show for some reason.......

At this point I don't know what to do except ask my PCP to send me to another endo for further lal work.

I don't know why it would show my thyroid as working overtime when it is acually low - do you?

I DO have dry eyes - either that or it looks like i'm crying.....cannot figure this crap out and it is really getting to me!

What do YOU think?

Big hugs!
Erin:hug::hug:

Hi Stephanie!
 

What you said made perfect sense to me! I;d much rather be alone than potentially hurt my fellas feelings! They prolly agree! LOL!:D

You are so young to be going to thru this....how long have had MG?

My 5 dogs are a GREAT source of comfort to me..they never compain and whine - they just love me for who I am......:D

I hope you have a great day today and just pamper yourself!

Big hugs!
ERin:hug:

Hey,

you can't expect yourself to be a saint and always be stoic about this.

and so what if you occassionally lose your temper, and hurt some innocent by-standers, who are your loved ones. trust me, they will survive, and it will also make them understand a bit more of what you are going through.:nopity:

and didn't you say "for better and for worse"?

on our 25th annirverssary I sent my husband an e-mail, and wrote him that I hope we have many more years "for better and for worth".

he wrote me back- it's also OK with me "for worse", every now and then.

we had our "fights" and dissagreements, before I became ill, so what's the difference now? :mf_argue:
and it's so nice to hug each other, after a really bad arguement, and decide that if we were able to get through this, then....:hug:

and we all had (and still have) to make our own adjustments to all this. :thud:my husband, my kids, and everyone else around. and aren't those that we love most, the ones that can hurt us and dissapoint us the most? and also the ones we can really lean on during our hardest times? and the ones that really care for us, and are ready to accept us even if we are not "perfect"? and the ones we can still support during our better moments? :grouphug:

alice

No, Erin, it certainly does not make any logical sense. Get your blood test results and get a 2nd opinion! What if you have Graves?! What it sounds like is that the doctor is out of their realm and is "guessing." Sorry, it just doesn't add up. An endocrinologist would KNOW exactly what tests meant. There's a big difference between having an underactive and overactive thyroid gland, as I'm sure you know.

And a good doctor would've run your thyroid antibodies and done an ultrasound if needed. Any sign of a goiter?

I hope you can get to the bottom of this.

Annie

Nice catch, Nicky.

Erin, I really hope that today is a better day. That is all we can hope for right? You are so comforting to so many people on this site, that we take it very personally when you are not doing well. My prayers are for you to get some answers finally .... you have been dealing with this pain issue for far too long! Take care ~ Mel