Left Shoulder Pain, Instability, Fear of ALS

[TimThomas24]

Had a clean emg in mid March, been to the neuro twice for all over twitching and leg stiffness and pain and he indicated BFS.But now I'm having an odd new symptom that I can't seem to shake the ALS fear with since I've read about odd shoulder problems being where it started for some ALS cases. My left shoulder is painful and unstable. I'm having tons of cracking and popping and now its in the other shoulder as well. My joints pop like crazy all over (wrists and knees) but the shoulder symptoms are the worst. I went to a ortho who is doing an mri due to possible labrum tear but it got me thinking that maybe the shoulders feel so loose and the joint pain is actually due to some muscle wasting or loss there that has weakened the stability of the joint. They did test the left deltoid during the emg and it was normal but I still am worried that maybe its all connected.

 

[MeaganGranger]

I am no doctor but I will tell you that lots of things can cause shoulder issues! Shortly after I was diagnosed with BFS I got a bit of a bug and ended up on couch for a week or two with nausea, and shortly after that I got a terribly stiff and painful shoulder. I couldn't even put my clothes on and off without help from my hubby, or excruciating pain. I never did see the doc about it, but I determined that just laying on it wrong for an extended period of time probably inflamed the rotator cuff or something. I did some very light stretching exercises (bend over at the waist slightly and let your arms loosely and gently swing back and forth, and gently walk your fingers up a door frame to stretch the shoulder). I also constantly used cold and warm compresses. I think its good you are checking with a therapist and someone who deals with this stuff, its important to keep it in check so you don't make a problem worse.I know some people get some joint pain and stiffness with BFS but do you do anything frequently like swimming or push ups? Like I said, it doesn't even have to be exercise. I got mine from just laying on the couch!Take care, and make sure you have a good over the counter pain reliever for joint pain and muscle aches, especially with shoulders these particular pain killers seemed to work better for me!P.S. Remember to stay off ALS websites!

 

[AllGoodHere]

I've had this popping & snapping too - it can be quite loud (knees, shoulders, hips, neck, back) but doesn't usually hurt. Shoulder: I went in to the ortho for painful joint swelling under my collar bone - Dx'd as a sprain (susbclavius) and told to rest it and ice it - not much of a help. Also had swelling and a tear in the supraspinatus and it was adjusted once successfully by a kinesiologist but it reoccurred. A good physical therapist may be helpful or a holistic chiro. However, I figured - unless I ran into something I couldn't deal with I'd work on it myself as the muscle tension wasn't stopping so it was up to me. I also didn't like the attitude of the health specialists "you can't remember how you did this?" and the disbelief that my muscles were unevenly tight for no apparent reason. Like I was hiding that I had actually done something weird to myself to get these sprains, etc. Oh, yes, I fell from a great height and caught myself with my arm behind me and forgot about it - THAT's how it happened, I'm coming clean now as I'm really a stunt woman in the movies in my alternative life.One thing that helps me - when using esp the shoulder joint, to try to increase the outward stretch in it (expand the joint giving it more room) so you aren't compressing the bone toward bone or stressing the ligaments and tendons. If you continue to press the joint in a misaligned state you can end up with an injury. In general though, practicing Qigong helps as it expands the joint areas and relaxes the body and mind. If you are in a larger city you can probably find a practitioner to teach you some exercises then it is up to you to practice (the hard part for me is being consistent). Why be worried when you have a clean emg? Try a more pragmatic attack and see what bodywork can help you; rather than worrying about what-ifs, work with the real issues that you have trying to ease the stress on you body.

 

[TimThomas24]

Its just so odd that suddenly I have this shoulder problem for going on 8 weeks now and rest, ice and advil have done nothing. The second I do push ups, go back to the weights or just sleep on it, I'm cracking, popping and in pain. The ortho spent 2 minutes with me, said he thinks it could be torn labrum cartilage (like meniscus in knee) and if MRI confirms it, I should have surgery to fix it. He was so friggin matter of fact about surgery and then he was gone. My head was spinning. I'm sitting there wondering how I would have torn my labrum at 35 with no major trauma or injury. I bench press moderate weight regularly but nothing ridiculous. Then the clicking started to be noticable in the right shoulder and I feel it when I run (swing my arms) and I'm thinking "crap, is this a result of muscle weakness that is causing a lack of support for the bones/joints there? The pain is more up the shoulder towards the collar bone. Anyway, I'm guessing the clean emg that included the left shoulder should allay that fear but I just find my mind going back to the bad stuff no matter what the neuro tells me or logic tells me. The worry just starts creeping back in.

 

[AllGoodHere]

Hey bfs/bcfs/pnhe is odd - get used to it. If you had weakness you wouldn't be able to do the stuff you are doing so try to be real about this. How is it that you won't accept that als is not a reasonable dx option for the symptoms we have? The nerves die in als, they don't stay the same over months and months and problems don't go jumping around the body in a start and stop fashion - ask any neurologist - it is a progressive disease of nerve death and any neuro with an actual degree can dx it. When you go to the dentist for a tooth ache do you think you have a tumor and the dentist just somehow missed it when he says you need a filling? It is the strength of your muscles working incorrectly & unbalanced against the joint that damages it. Have you seen guys in the gym throwing their back into an arch to lift too much weight and then wondering why they have low back pain - unequal tension on your joints will cause problems, poor alignment will cause problems. Worry about joint and soft tissue damage - that is something real - but don't let anyone cut on you until you get a second opinion and try some physical therapy or something. I've had this crap for years - had the same type of thing as you describe - I am not weak and not dead but am feeling a little grouchy. Time for another forum vacation I guess.

 

[beensuggested]

OMG REALLY?? You lift, even moderately and you have crepitous (cracking noises) and you have pain and you can't do push ups or lay on the shoulder so you immediately thought first off right away that it couldn't possibly be a problem in the joint but it must be ALS because you read somewhere that ALS can cause shoulder problems? If you have a post nasal drip and a cough do you immediately suspect that it might be a killer strain of TB? Sorry if I don't seem exactly sympathetic here but REALLY? I have said it before and I will say it again...muscle wasting is not a hmmm does that look a tad different than the other side? Shall I put some better lighting on it and then squint really hard? It is a no brainer. Atrophy and muscle wasting is pronounced when it happens. There is no real guessing. ALS does NOT cause crepitous. You went to an ortho who is thinking torn labrum. Got news for you kiddo, very very common and it is one of those ligamentous injuries that is not always a big traumatic event but rather a little insult here and then here and then BOOM suddenly you are symptomatic. I don't have this forum on favorites so I have to often look it up on google. Underneath ths site was an ALS site and the last post was listed and it said...been twitching and having muscle pain for 6 years, I hear all this talk about benign fasiculation and I don't buy it. Here is some nitwit who is convinced that he is dying because HE doens't buy BFS. So after SIX years of no muscle wasting, no weakness just muscle pain and twitching he is telling people who have been diagnosed with this disease that HE doesn't buy it and HE has what they have when there is absolutely no logic to his statements. Why am I bringing this up? Because just because you choose to not buy that this is benign and there can be something that makes you twitch and ache and feel kind of crappy that is benign does not make it any less so. The fact that EVERYTHING must somehow be a progression into something awful rather than you have BFS AND you might actually have a shoulder injury is no less sily than the guy thinking that he is just somehow taking a more round about journey to the end after 6 years. I am sorry to be so hard on you but as a doc, as someone who has had this condition I really think sometimes we need to get a grip on reality.Kit

 

[LisaQ.]

Very well said, kit!And that guy on the **S board after six years, how IDIOTIC and ungrateful does he look to those poor people who are REALLY suffering? He should be very ashamed of himself, indeed, and leave those suffering souls in peace. I often wonder how we are so easily able to contort and spin and twist our symptoms to fit the profile of a fatal disease we do not have, yet LOGICAL reasoning about the BENIGN condition that we DO have seems to escape us? Why are we so quick to believe that the LEAST likely scenario; against ALL the odds, the statistically improbable, will beset US, yet we refuse to accept the EVIDENCE, the DATA, the SIMPLE truth that we are absolutely fine? I've seen some pretty crazy dot-connecting on this board. From mad cow disease to someone thinking their radial pulse was a fatal fasciculation. Shoulders are probably one of the most injury-prone joints. We are a small community hospital and do SEVERAL outpatient shoulders and a few in-patient post-ops per week. Yet, in two years that I've worked there, I've only had ONE **S patient. And he was one of only a handful in my lifetime-I've been an RN for (ahem) 20+ years. TJM, I'd say those are pretty good odds, especially considering your symptoms are not consistent with **S in the FIRST place. Blessings, Sue

 

[TimThomas24]

Thanks for being harsh. I deserved it. I needed a reality check, or in this case a verbal smack in the face. Sitting here reading my post again, I feel like an ass. I apologize if my silliness has caused annoyance. That said, I would NEVER question the existence of BFS like the twit on the forum you reference who has had twitching for 6 yrs. This is still relatively new and raw to me (mine started in February). I read all the stuff about 6-12 months before you can rest easy if there's no weakness, etc., and maybe I've got that clock silently running in my head. Again, sorry.

 

[bfhopeful2]

I have a torn meniscus in my left knee. Has it for two years after getting caught in a pretty nasty heel hook. Anyway it pops all the friggin time. I still fight on it. I can still walk so I am not getting the surgery. Sometimes anxiety has a way of getting the best of us. I know for sure mine does. Think about how much emotional disstress you cause yourself every day just thinking about BFS. Again I am not pointing fingers as I am guilty as well. But seriously anxiety and depression can cause aches and pains of all kinds. I know you know the commercial. Who does depression hurt? Everyone! Where does depression hurt? Everywhere! Seriously it alone can cause your symptoms. You lift get a minor tear. Keep fing with it because you are testing it, guess what it gets worse. Then you are obsession about it and guess what, it gets worse. It may have nothing to do with bfs but you brought it along for the ride anyway. I am guilty of the same stuff. I am in therapy, see a physchiatrist, meditate, muscle relaxation techniques, warm baths and lot of sex with the girlfriend and I still have anxiety. I have two kids run a business, which is very sucessesful and I still find time to stress and obsess. So beleive me when I tell you I know what I am talking about. Hell I'm 32 and have had panic attacks since I was 14. But I agree with Kit. You need to get your head on straight for your own good. Everytime a negative thought like that comes into your head think of something positive right away. Say a positive affirmation and then do anything you can to take your mind off of it. If it happens 1,000 times a day challenge it back 1,000 times. If you don't your anxiety will take over and your mind will begin to beleive your irrational thoughts. Thoughts are not true just because you think them. Challenge them! It is not easy and I to am not cured, but by doing just what I told you I have not had a panic attack in years. I can actually stop them. The obsessive thoughts I am still working on! Just try an relax and enjoy life whenever you can. I don't know the exact quote, bible verse whatever. But it goes something like this. God grant me the serenty to change the things I can, accept the things I can't and the wisdom to know the difference. Be well and have some fun.

 

[TimThomas24]

Thanks for the replies. I think part of my problem is that for the first time in my life (I'm 36) and very athletic, I'm having some injuries and aches/pains that I never had to deal with before in my 20s or early 30s. I'm taking the shoulder injury and the popping in the good shoulder and attributing it to the twitching. I'm not the typical health anxiety case. I've never been the same since I had a second bout of unexplained pancreatitis last year. I'm an attorney by trade and as such, I always want answers to questions. When I ended up in the hospital for over a week with pancreatitis, on morphine, unable to sleep for four days, blood counts that were very bad, and they couldn't find a cause or answer, its when I started trying to find answers and explanations for things. Its like my mind can handle the uncertainty of it and the fact that all these docs can't tell me why I woke up out of the blue in the middle of the night, passing out in pain and ended up in shock and in the hospital. I live in a constant state of having one eye open, on guard for the next attack. The docs basically said, whatever caused it, its something subtle, so go on and live your life, watch your fat intake and don't ever drink a drop of alcohol again since whatever it is, alcohol will only make it worse. I feel like a medical oddity and am thinking since this odd, inexplicable illness befell me, there must be another one on the horizon. So when the twitching and then the shoulder started, I start wondering what it is, start considering the rare and the absurd and have this feeling that I'm somehow genetically messed up and faulty and destined for some horrible illness.

 

[beensuggested]

Hey kiddo, I am sorry if I came off as harsh. I had a bad day yesterday and was in no mood for "whining" - which you were NOT doing but there are some others who are and then when I saw that post from the person twitching for 6 years, didn't get a chance to talk to my husband who is overseas...well it made a perfect storm Sometimes with this condition you have you "moments" where the irrational gets the best of you despite your best intentions. Glad I could slap some sense into you I will be some what more sympathetic next time - maybe Pancreatitis twice huh? Lots of reasonably benign things can cause that as well. Sometimes it is a passing stone in the bile duct or even in the pancreas itself that can do that - which is usually why it comes on quick and then we can't find any evidence of why. Unless you were imbibing extremely heavy prior to the attack it was likely due to some small stones that passed. You may likely have some very small ducts At any rate, you are likely going to be fine in all aspects of your life kiddo.So I hope I have not come off as super witch, was not my intent. Please feel free to ask me just about anything and if I am feeling evil at the time I shall try to give ample warning SmoochesKit

 

[TimThomas24]

Thanks Kit. The pancreatitis thing is a real mystery. Had an attack in 2003 that only kept me in the hospital for two days. Had no idea what it was when I woke up doubled over. In the ER my panc. enzymes were elevated. They said it was pancreatitis and since there was no evidence of stones they pretty much accused me of being an alcoholic. They finally believed me that I only drank moderately and didn't even drink heavily in college. They did an MRCP and CT and found nothing. They chalked it up as a one time thing. But then five years later, I had another attack (this one was much worse). They did an MRCP and CT and again saw no evidence of stones, crystals, anything. Since this attack was so bad and it was my second attack, the GI sent me to a specialist in Indianapolis. He wanted to do an ERCP suspecting that I had some sphincter of oddi/pancreatic duct spasming/malfunctioning. But that test apparently has lots of risk. Many who have it actually get pancreatitis as a result of the test and most end up getting the duct cut to make it larger. The duct cutting provides short-term relief but they eventually end up with scarring in the duct and then it becomes an endless cycle of ERCPs and duct cutting. So I got a second opinion in at Univ of Cincinnati's Pancreatic Center and they recommended a less invasive test (Endoscopic ultrasound). I had it done and the doc said the pancreas was textbook normal. No sign of gall sludge, crystals, or any duct abnormality. They took me off a BP med I was on since it had some history of pancreatitis as a side effect. I try to avoid fatty foods since it could still have been gallbladder related and I avoid alcohol. But it sucks not having a clear picture of the cause.

 

[bfhopeful2]

I agree not knowing is the worst! Not knowing means your not able to predict and when that happens you always predict the worst. Why not, it's almost as if we don't beleive we can be healthy. As I said before I am a victom of my own thinking patterns as well. Everyday I question BFS. I don't think I have ALS as some people do on here, my deamons are different, but they are all the same. Your body doing funky stuff with no explanation. It is natual to think it can only get worse. But look at people on this board that have been here for years and they are fine. You have to find confidence in that. I have yet to see a board of people that were cleared by neurologists only to find out they had something horrible. If you ever do find that one make sure not to share it with us.

 

[AllGoodHere]

TJM - Your pancreatis attacks sound a bit like my kidney stones...lots of pain and no explanation. For me they also were at the start of the bcfs: once in hospital, the second shorter lived but not lacking in drama. You do have to wonder at the timing....it is so hard for some of us to accept the odd clusters of spontaneous happenings in our physical bodies - especially if you're an analytical sort of person. However, sometimes crap just happens - no explanation and no use wondering about it. Tough to let it go......TJM and Kit - Doing research on L-carnitine I've come across quite a few articles about using carnitine (acetyl-L or L-) to treat pancreatitis. Reading papers on PubMed etc. - haha it's almost as bad as trying to make out conversations in Spanish for me as I've never had a course in that either and am like a toddler in comprehension - 'eh? no entiendo'. I don't know if this mention of pancreatitis means anything to you as it was concerned with mostly people on specific drugs (statins and some HIV drugs) but it is odd that it is linked to muscle spasms, etc through research. There is so much info on L-carnitine - lots of new/current research going on in relation to metabolic myopathies and genetic disorders that affect skeletal muscle and many more..... I'm still waiting for my neuro to get back with me about why it helps me to take l-carnitine as he pretty much already ruled out adult onset CPT2. The metabolic syndromes are pretty complicated & he told me he'd have to look them up, do some reading, as they are pretty rare & never sees them in his practice. However, it appears that l-carnitine is currently used to treat more than one metabolic problem and investigated for others. I do find it odd that my cholesterol levels skyrocketed at the same time my bcfs started (no weight or diet change) and carnitine is being tested to treat hypercholestremia also.Here is an article I found (written by a psychiatrist no less) in layman's terms and it has referenced several articles within it.Anyway, at low doses (1-3 g) l-carnitine has been tested and is pretty innocuous unless you have a thyroid problems so TJM you could give it a try. It takes about a day to get into your system and you should not take it all at once or it may upset your stomach. It has quieted my muscle spasms and cramps - not completely but about 75% - making them much more tolerable.