Myofascial Pain

bloggymom

Member
I was just diagnosed with myofascial pain. The doctor didn't even tell me... I was reading my clinic notes that the doctor wrote after my appointment (posted online on my patient record).

Obviously I am frustrated that the doctor didn't tell me to my face.

Anyone else have this diagnosis???
 
ok that's crappy that the doctor didn't even mention it to you. Good for you for being proactive to go out and read your online record. I didn't actually know what myofascial pain was, just checked mayo for a definition....sounds like something MANY with CF are facing. I know my son has had random pains that get very bad and we couldn't find the reason until our CF doc called in an alternative doc for chronic pain. They checked my son's blood levels of other minerals & vitamins and it seems that his magnesium was almost nonexistent. Since he was in the hospital at the time, we were able to do an iv med of magnesium in his picc line. This seemed to help. One other thing to check is your adrenal levels. My son would just say "I hurt" and it would be pain all over, not usual chest/gut pains but bad pain all over his body. He is not yet diabetic (but numbers run diabetic while he's fighting infections or on iv meds). We work with our endocrinologist & cf team to have a tapering dose of prednisone (steroid pills) when this occurs. It seems to bring his body up out of the pain and the tapering off of pills at the end of the script is due to him rebounding when we just stopped the pills.

You shouldn't have to hurt. Try other remedies like warm baths with epsom salts, compresses, your vest run at a lower level feels like more of a massage, massages, emu oil, topical things as well as trying to get more rest. Good luck!!

Description from mayo: http://www.mayoclinic.com/health/myofascial-pain-syndrome/DS01042
 

PepperKitty

New member
I was diagnosed with myofacial pain syndrome several years ago. I went to countless doctors before finally being diagnosed, by a pain specialist who suffered from the condition himself. The pain is very difficult to treat. It doesn't respond to pills, chiropractors, narcotics, etc. Physical rehab didn't work for me either. The only thing that has helped me is trigger point injections, done by a physican who is familair with the syndrome. The injections are a saline & aenesthesia mixture, not steroids. I also found a great massage therapist who has help my pain alot. My pain is mostly in my shoulders, neck, & upper back. I feel like I have a "pinched nerve" running down my left arm, but is really referred muscle pain. My pain started when I was an early teenager, but has worsened as my CF lung disease has worsened. Being stressed & overly tired definately makes the pain worse. I also have CF related arthritis.
 

Gentrygirl

New member
Have you tried acupuncture? I was always afraid of it myself, but in giving it a try, I think it is relieving pain that I had grown so accustomed to I didn't realize i still had it. I've read it gives a lot of people relief from so many things. I'd say worth a try!
 

LittleLab4CF

Super Moderator
If a contest were held to fritter away at one missed diagnosis after another, myofascial pain diagnosis and treatment is right up there. With a hunch back, or kyphosis, being a hallmark of the CF stereotype, so much back pain has to do with the battle up close to the spine, presumably inflaming the nerves around and passing through openings in the vertebrae. When the nerves are pinched or impinged by the restrictive opening through the bone, it becomes its own source of pain. Your lungs are right against your shoulders and neck, we get nailed from the inside as much as postural stress.

I thoroughly embrace the method used to depolarize trigger points with the injections you describe. There is legitimate biochemistry going on behind it all. One point of departure was my doctor using a rounded tool about the diameter of a dime to press on the trigger point after the injection had taken hold. It works, and depending on how fragile you are, it hurts for a second or it is intolerable and can’t be part of the therapy.

Please don’t take offense at the obvious, referred pain from pancreatitis, gallbladder attacks, and bile duct obstructions all have intra-scapular spots where the back hurts like you’ve been panning gold with a wash tub. So much of our back pain, and so far every CFer has or has had it, can thank embryology.

The reason a person’s left shoulder and arm might hurt, signaling a potential heart attack, has to do with embryonic development. Embryology studies the time when embryo cells begin to migrate into areas that will be the urogenital organs, digestive organs, lungs and heart all forming more or less from the spine forward. The heart forms from the spine which forms the left shoulder and arm. One of two places will show referred pain with angina, the left shoulder and arm, or sometimes the middle of the back as was the case with my mother’s heart attack.

As you might suspect, the upper region of the gut including the liver and biliary system, pancreas and the stomach originate in the region that eventually becomes the upper back. Some years back I was having a celiac block performed when I got this powerful nerve shock up my back, right to that intra-scapular spot. That isn’t proof of the idea, scientists made these discoveries some time ago.

Having areas that will spasm, like between and about the shoulder blades, depolarized is a good idea along with other areas of myofascial pain you have. It was some of the best money I have spent for the results. There are a wide number of trigger points associated with the gut that show as myofascial pain. Any of these points will benefit from depolarizing, but they most likely will return. High fevers or repeated fevers along with CFRD cause neuropathy or sometimes fibromyalgia. Lyrica, an NSAID type drug has proven effective if this is beyond myofascial pain.

The same places your doctor injects saline and numbing agent are the trigger points used by an acupuncturist. I tried several, including one in Taiwan for six months, and though I couldn’t get lasting relief, I firmly believe in it. Just keep in mind, they are performing neurological adjustments, they don’t cure cancer.

LL
 

Melissa75

Administrator
LL,
Hi. It seems like you have a huge understanding of pain along other things. So I want to ask you about my pain d'jour, have had it many other jours in the past too.

My lungs have been acting up and last night I started having a referred sharp pain in my right shoulder. Not the blade or cuff but shooting thru the right angle--geez this is harder to describe than I thought. Where a tailor would start to measure your arm's length. There.

It increases with inhalation and lying on my back is awful, and decreases a bit if i roll to the opposite side.
Ibuprofen helps. Arm movements make no difference.
I'm think right upper lobe inflammation? What do you think?
 

LittleLab4CF

Super Moderator
I can't name that pain, but it sounds like symptoms of thorasic outlet syndrome. With emphasis on the "like" part of it all, the nerves exit the cervical vertebrae, those making up your neck, pass between the scapula and the ribs and just under your shoulder to the bracial plexus and down your arm to your finger tips. Some people experience a pinch or rubbing of this nerve bundle when moving the shoulder blade or scapula around. Conversely if you breathe up against this nerve, you could pinch it. This is a huge nerve and it will let you know just how big it is if you pinch it. Considering it hurts most when you lie on that scapula and breathe deeply, this would be a likely suspect. The source could easily be the lobe inflammation you suspect, the pain probably seems strange. Don't rule out pleural effusion of pleuracy. Does that sound close?

Just so nobody starts tracking down TOS or thorasic outlet syndrome, although CFers could be candidates because of lung infections, you do not want TOS. This is one of the most controversial neurological/postural medical problems out there. When therapy fails, and often it does, they start removing ribs. Yah, they cut ribs away so the nerves aren't pinched.

LL
 

LittleLab4CF

Super Moderator
Melissa75,
After I responded to your post I got to thinking about referred pain to the "tailor mark" specific to the right shoulder. The embryonic ties are right shoulder to the diaphram and some strong nerve connections pass between them in most people. A lot of compromised organs surround the diaphram, lungs above and the liver and GI tract rubs from below. A hot gallbladder, diverticuli from the transverse colon and especially the stomach where the referred nerve path winds up along the esophagus and out to the right shoulder.

Since you have an upper right lobe issue, the first guess has an advantage. It could be dead wrong. Organs that touch the diaphram are better suspects for this being referred pain like the intra scapular pain is. Keep tuned on these areas and hopefully you will find a correlation.

Please let me know if you isolate this pain de'jour,

LL
 

Melissa75

Administrator
LL,

Thanks for responding. 2x. :) The pain went away pretty quickly. Yay.

It IS a "strange pain" --hollow and crazybad, not a full feeling pain like bursitis which is basically the same spot and I've had on the left side. The crazybad comes from wanting to hold my breath to keep it bearable, but for obvious reasons having to breath.

I think you're right that it's something inflamed pressing against a nerve bundle. It happens in different parts of my chest at different times and less often nowadays than yrs past. And for less time.

Yrs ago when it started, I'd hit the ER, where most but not all the time they'd find a patchy small pneumonia on the other side of where I'd point out the pain. My pulmo said, inflamed distal airways irritating other organs that have nerves...bc lungs dont.
Ive had pericarditis in the past too so when i get it in the other shoulder i chalk it up to a recurrence of that. (Mild, no need to drain, just picked up in a scan).

In the beginning, the pain sometimes seemed to precede the infection...at least in terms of mucus color. I even had a theory at one point that holding my kids (ambidextrously in my case) sometimes compressed my airways and made atelectasis and this pain. That was part of my collagen issue theory for my bronch... and thankfully I thought of it long after my kids were done being carried by me. :) other theories abounded anyway e.g. endometriosis in those areas, infection the #1 instigator.

Anyway, now I slam down hard on the pain so as not to compromise mucus clearance with freaked out excruciating breathing.

I did look up TOS. I don't have any of the weak grip or circulation issues thank goodness. It is interesting though. My mom has one arm thats a different size and color than the other. She always speaks of a burning discomfort in the bloated arm's axila (Spanish word - not sure if it works in English). It has been scanned for venous abnormalities and was fine. I happen to be taking her to a new Dr today and plan to ask more.
 

LittleLab4CF

Super Moderator
Melissa75,

I don't know if I helped with your medical mystery but it is a great way of dealing with the constant undertow of CF issues, real and imaginary. For me, knowing and understanding is my defense against the fear of not knowing.

I wonder if "axia" might be short for ataxia. Like the word "angina" in english it could be a heart attack or the pain of a bad heart. Spanish speaking Argentinian's use angina to describe a chest cold or the pain from coughing. Horatio, my EE came in complaining of angina one day and as people were getting ready to rush him to the hospital, I noticed this 27yr old man didn't look as if his heart was dying so I asked him if his angina was caught from his son. He admitted probably it came through the daycare process and everybody sat back down. Like many Latin based languages, he soon realized most modern Spanish words were concocted from Latin roots and universal amongst the Romance languages. "Angina" wasn't a good one to experiment with.

Ataxia is a form of peripheral neuropathy. It can be inherited and the inheritance could be as specific as one arm. The pain can be very similar to diabetic neuropathy and in non hereditary cases, it can be nearly identical. Having your dad's teeth or your mother's dimorphic arm, isn't a certainty you will share her unique pain, they could be completely different issues.

It has been fun,

LL

P.S. * Oops! Caught again by dyslexia. Axila is Spanish for armpit so it's anatomically close to your source of pain déjour.
 

Melissa75

Administrator
LL,

Yeah, understanding and learning are definitely coping mechanisms for me, though acceptance has been sweet too. That came only after exhausting what I felt were all the possibilities for discovering "Oh, X is what's going. Just take Y and this won't happen again."

I reread my last post and realized I was unclear when I wrote the pneumonias as "on the other side" of where I pointed. I just meant the other side of my skin...same side of body.

I was totally blanking on "armpit" when I used my mom's term, axila. Also, maybe hoping there was a more elegant word. Argentines, half- ones too, are known for being elegant. ;) (Her appt yielded nothing of note, btw.)

What's an EE?
 

LittleLab4CF

Super Moderator
Melissa,

I was looking for a more elegant term myself, but it is a really important landmark. If you imagine pushing your fingers through the front of your pectoral muscle toward your armpit, the painful sensation is showing exactly where the brachial plexus is located. This is one of those nerve nodes that cause the arm to recoil from a hot surface before the brain can think about it.

The difference is a plexus is a whole wad of nodes and a true interruption in the nerve path from the brain down the arm. I ran across TOS when I was experiencing tingling and weakness in three fingers. An Electrical Myelogram (EMG) is this medieval torture where they stab a needle into or near a nerve say in the wrist and another up under the armpit. Then they run an electrical current through it to see how much you jump. Not really, but they measure the strength of the signal and it is a substantial shock. Since the nerve goes into the brachial plexus, a sort of mini-brain, what goes out from it to the brain may not be a genuine signal from the arm. Again they check the nerve coming out of the neck and the last point before entering into the plexus.

“EE” is from one of my arcane languages. I used to have an ME, EE and a Software Engineer, amongst other specialties for designing and manufacturing robots. An Electrical or Electronic Engineer gets the short hand of “EE”. Sorry, I have promised not to use unexplained acronyms. Oh, ME is a Mechanical Engineer. My Argentine engineer was impressively sophisticated when I met him. I wish I had called him for a better term.

LL
 
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