Widespread muscle pain and weakness? UPDATE post 23

[torinsmom]

I have a coworker who has been having some weird symptoms, and with the number of people on the DIS, I thought I would see if anyone has any experience that might help her.

About a month ago, she started having achy muscles in one arm. About a week later, it spread to her other arm and now it is in both arms and legs. She also has had some tingling in one hand on and off. She says her muscles are achy and tender to the touch, and it gets worse in the afternoon/evening. She was on vacation last week and had to leave and go home, because she was so fatigued. This was the first she had this symptom, but it has persisted.

She had gone to a orthopedist about a week after the pain first started. He referred her to a Spine Center, who did an MRI of her spine(I guess they thought there might be some nerves involved?) So, after coming home, she went back to get the MRI report and was told it was normal, except that the holes in the vertebrae where the spinal cord goes through are larger than normal. He mentioned the possibility of MS, which is about all my coworker heard, because that freaked her out.

So, now she is waiting for a referral to a neurologist, who of course will consult and then maybe get a brain MRI. It is just such a long process, and I know she is freaked out.

Other info--she is in her early 50's and has type 1 diabetes controlled with an insulin pump. She has high blood pressure controlled by meds.

Any ideas? She is going to her GP on Friday. I suggested she ask about the possibility of Lyme Disease or Vitamin deficiencies.

Marsha

 

[WDWBarb]

Personal experience with similar symptoms being related to hypothyroidism. Hard to diagnose but was easily treated.

 

[kimblebee]

I have MS and I have to say for me, personally, I don't have a lot of achy muscles. My first guess is fibromyalgia just because it sounds like what my neighbor went through.

It is best not to try and self diagnos because I think it only leads to needless worrying. She is doing the best thing by going to see her doctor. I hope she gets relief soon because living in pain is not fun.

 

[booger73]

Sounds more muscle/muscle junction than neurological... especially if it's BOTH arms and legs.. but you never know.. MS usually isn't painful like the PP mentioned

she's diabetic.. i would hope that someone would be smart enough to stop any cholesterol medicine(statin) that she might be on since that's a well known side effect if she's on one

thyroid, possible, but usually pretty checked early.. is it more proximal (closer) than distal (further away) weakness - i.e. thighs, instead of lower calves - think: rising from a chair

usually can snag a couple of muscle tests easily (CPK, etc) to make sure that's not too crazy

Rash ? polymyositis and dermatomyositis can hurt and cause weakness - she's also at risk since she has DM1 and it's an auto-immune phenomenon of course
Fibromyalgia.. maybe but it's more trigger points, not all muscles

hard to say without more info

 

[Angelhalo]

I'm no doctor but it sounds pretty similar to my friend who has Fibromyalgia.

 

[superdiz]

Eh I hesitate to say fibromyalgia because it is so overdiagnosed these days. Seems like when docs run out of ideas, that's the stamp they give people.

MS is possible.

Lyme Disease is very possible. There is actually special testing that needs to be sent to California where a very specialized lab runs the tests. Often times, the general test comes back negative when people are, in fact, positive.

Has she been in any tick infested areas? What part of the country? The best thing to do is see the neurologist. A friend of mine had symptoms like this in school, actually passed out one day in her shower. Then she was right as rain after all the testing and they never found anything. Weird!

 

[soccerchick]

Eh I hesitate to say fibromyalgia because it is so overdiagnosed these days. Seems like when docs run out of ideas, that's the stamp they give people.

MS is possible.

Lyme Disease is very possible. There is actually special testing that needs to be sent to California where a very specialized lab runs the tests. Often times, the general test comes back negative when people are, in fact, positive.

Has she been in any tick infested areas? What part of the country? The best thing to do is see the neurologist. A friend of mine had symptoms like this in school, actually passed out one day in her shower. Then she was right as rain after all the testing and they never found anything. Weird!

I too thought of Lyme Disease.

 

[RNMOM]

I have both psoriatic arthritis and fibro. I got the arthritis first and my pain was in my hands and wrists. I get pain in the tendons and joints with this. A couple years ago I got this pain all over. I felt like I do when I am getting the flu, ache all over, exhausted, just wanting to crawl into bed but the pain was awful. I went back to my rheumatologist and I have many of the trigger points. We simply added flexaril to my other meds and it helped amazingly. I still get flares a few times a year and manage the best I can but never as bad as that first one.

 

[Scurvy]

Is she taking a statin drug like Crestor or Lipitor? My husband had unexplained muscle pain and weakness and they initially thought he might have MS. After lots of tests and visits to all sorts of specialists the doctor confirmed that he was just having a reaction to Crestor.

 

[torinsmom]

Personal experience with similar symptoms being related to hypothyroidism. Hard to diagnose but was easily treated.

I believe she is hypothyroid and on meds for that. She said they had checked her levels at her physical 3 months ago and they were fine. Maybe she should still have them checked? I know my mom's thyroid function improved after years once and she had all kinds or weird symptoms. Once they adjusted her meds, she was much better.

Sounds more muscle/muscle junction than neurological... especially if it's BOTH arms and legs.. but you never know.. MS usually isn't painful like the PP mentioned

she's diabetic.. i would hope that someone would be smart enough to stop any cholesterol medicine(statin) that she might be on since that's a well known side effect if she's on one

thyroid, possible, but usually pretty checked early.. is it more proximal (closer) than distal (further away) weakness - i.e. thighs, instead of lower calves - think: rising from a chair

usually can snag a couple of muscle tests easily (CPK, etc) to make sure that's not too crazy

Rash ? polymyositis and dermatomyositis can hurt and cause weakness - she's also at risk since she has DM1 and it's an auto-immune phenomenon of course
Fibromyalgia.. maybe but it's more trigger points, not all muscles

hard to say without more info

No rash that she has mentioned. I will mention those two disorders to her. I think the spine doctor mentioned having an EMG done(is that the one with the shocking the nerves part?)

I'm no doctor but it sounds pretty similar to my friend who has Fibromyalgia.

I hope not. I know that can be a really rough thing to have.

Eh I hesitate to say fibromyalgia because it is so overdiagnosed these days. Seems like when docs run out of ideas, that's the stamp they give people.

MS is possible.

Lyme Disease is very possible. There is actually special testing that needs to be sent to California where a very specialized lab runs the tests. Often times, the general test comes back negative when people are, in fact, positive.

Has she been in any tick infested areas? What part of the country? The best thing to do is see the neurologist. A friend of mine had symptoms like this in school, actually passed out one day in her shower. Then she was right as rain after all the testing and they never found anything. Weird!

We live in NC. I don't think she is a big woodsy person, but around here they can sometimes blow off trees and onto people when the season is right.


Thanks for all the ideas. There is one more symptom--heel pain in her left foot. Her husband found something that said left heel pain is a sign of MS, but I can't find anything that says that.

I wish the dr. would not have even ventured a guess about what could be possible. It's bad enough to worry what might be wrong without having something to look up on the internet.

 

[FormrCastMbr]

Personal experience with similar symptoms being related to hypothyroidism. Hard to diagnose but was easily treated.

I was going to say the same thing. I have been having wierd swelling, aches and pains and it travels...feet, ankles, elbows, wrists, fingers, etc. I have Graves disease and multiple nodules. Looks like I will be having a thyroidectomy soon.

 

[booger73]

Heel pain may just be plantar fasciitis for all we know (does it hurt first thing in the am when she wakes up/goes to step on it?) and nothing related..
Having Diabetes puts her at risk for neuropathy and nerve damage so any 'numbness/tingling' in one spot may or may not be anything separate either

If she's had DM1 for a while she's at risk for neuropathy itself - while it's not usually primarily motor (i.e. muscle/movement) it certainly can be and that can cause some weakness and pain.. EMG will show what's going on with the nerves/muscles and is likely a good next test.. is her DM controlled, btw?

Lyme doesn't 'start in "one month" all of a sudden nor manifest itself as muscle pain in one arm.. not without joint sx/systemic sx, etc.. and although we don't have an exam, we can only go by what you're saying in words.. fibromyalgia is trigger points -> say trapezius, lateral epicondyle, knee, gluteal, etc that hurt when you push on them.. that is not the same thing as pain in the 'ARMS and LEGS" that are "achy, tender to touch" that the OP is describing her friend as having

one good thing for her to concentrate on may be a differentiation between proximal muscles (say: hip, quads, shoulders, deltoids) as opposed to forearm/wrist/feet, etc - might help as she's giving the hx... having sensory loss (touch, vibration, temperature, pain) or not is helpful..

Guess it could be low Vit D as some people can't tell the difference between muscle and bone pain sometime.. but dunno. If she had other things (fever, rash, joint swelling, fluid, ulcers, etc) i'd call it rheumatological, but hard to know that.. Wouldn't be surprised if she needs an EMG/NCV to find out..

Oh oops, also forgot.. have had a few patients that confused boney pain with muscle pain because they were also hyperparathyroid (calcium/phosphorous, PTH) was off.. those can also be checked along with her thyroid

 

[LuvOrlando]

Please don't think I am making light of the symptoms because in all seriousness, Depression can cause a person to focus their attention inward and FEEL every ache and pain with more intensity. Depression is also a side effect of Thyroid trouble. I have had a few friends on the generic whose Drs had to switch them to the brand because wide swings in blood levels kept happening with this particular generic and the swings were causing all sorts of trouble.

 

[torinsmom]

Wow, you guys are a wealth of information! I will ask her about the cholesterol lowering meds tomorrow, and also make sure she asks to have her thyroid thoroughly checked.

As far as I know, her diabetes is under control. This is my 3rd year being in the same classroom with her, and she has had lsevere low blood sugar attacks twice in that time. She has actually been able to reduce her insulin dose, because she has reduced her carbs(but this has been for quite awhile before symptoms started)

I have been very low vitamin D and don't recall any pain, just more being terribly fatigued.

 

[booger73]

updates?

 

[HonnyDipp]

I have a rare muscle disease called Polymyositis. At the beginning of 2006, I became sore and achy in my upper legs and arms. Climbing stairs even getting up from chairs became impossible. After seeing my primary doctor, he was unable to diagnose me, I went 6 months before I could see a specialist. I went from fully active raising 3 kids on my own, to walking with a cane in less then six months. 4 years later, I'm learning how to walk again, after finally finding the right dose of meds and physical therapy

Most PM patients get a rash, but not me, it mainly affected my arms and legs. My advice is start with a rheumatologist, they will probably set up a muscle biopsy, MRI and CAT scan

 

[C.Ann]

Fibromyalgia
Epstien Barr
Lyme Disease
Chronic Fatigue Syndrome
Mono

Hope she can get to the bottom of it and it's nothing serious..

 

[torinsmom]

My coworker got an appt with a neurologist yesterday(cancellation). They took a lot of blood and scheduled her EMG.

This morning when I was walking into the classroom, she called me and told me she had come in and suddenly started feeling really weak and like she was going to pass out. She ended up leaving, but did not make it very far. She had to call her husband to come get her, because she felt too weak and weird to drive.

I didn't want to call her this afternoon, for fear of disturbing her rest. I hope she is feeling better tomorrow. She already had an appt. with her GP tomorrow morning, and she has a list of things people here suggested. Some of her symptoms seemed to fit hyperparathyroidism and some fit some other suggestions. I suggested she ask for a full thyroid workup and a check of all vitamins.

 

[high meadows]

It could be rheumatoid arthritis, which can be checked with a blood test and treated successfully is started soon.

 

[booger73]

Rheumatoid causes joint pains (mainly in the wrist, fingers, knees, shoulders).. not muscle aches/pain/weakness.. it's not rheumatoid.

Does she have any vision problems? I guess myasthenia could be in there...
I'm going to assume her muscles get 'weaker' the more she 'uses' them.. there is a difference between muscles that get 'stronger' as she uses them too (that's eaton-lambert syndrome, which is rare/cancer related)

Painful muscles does make you think EMG.. we'll see.. it could be a myositis/myopathy.. there are some rare ones that may even need muscle biopsy (inclusion body myositis, etc, etc).. I'm sure they're on the right track if Neuro's seeing her