Hi hon!

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

How are you doing?

Erin

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

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.
Kendra

ERIN

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

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.


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!

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.

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