Bone/Marrow Inflammation: Anyone else?

I developed hip pain over 4 years ago. I was sent to physical therapy. Having ME/CFS, that makes any physical therapy pretty tough as this condition causes PEM with any activity.  Trying to explain to medical about ME/CFS was tough. Most PT’s have never heard about it. I was also told to “push through the pain, there’s nothing mechanically wrong with me.” How did he know? I’ve had no MRI done to show that fact. Why does insurance send people to PT without a FULL picture. Xrays don’t show a lot. This can absolutely cause further damage if there really is an issue going on. Does insurance really want to pay for that to avoid the cost of further testing? By the way, my insurance would have approved it, my doctor simply did not want to request it due to OTHER’S insurance typically not approving it. I told her mine would but it didn’t matter.  So failed PT and done. It just made me worse.

It took 3 years for doctors to really listen to me after multiple visits and many complaints. Essentially I flat out demanded it. I got my MRI. I had asked so many doctors to please give me an MRI and they all refused. My primary civilian doctor, my VA doctor, the specialists, all of them said no and to do physical therapy but yet, they couldn’t tell me why my bones hurt. Why it was so bad. Why it felt like my muscles were wanting to rip away from my bones, the pain was so intense.  Xrays were normal. 3 years!! MRI showed bilateral labral tears in both hips with bone marrow inflammation in my pelvic bones. Guess it wasn’t in my head, now was it? My orthopedic doctor did not want to do the surgery for my labral tears. He felt that there was too much going on and that it isn’t the cause of the severe pains. He also thought I was a bizarre case. He brought in their in house physical therapist and another doctor to evaluate, but that just resulted in feeling like a lab rat and no further direction or instructions on what to do besides….more pt.

I did like my new physical therapist. She was great. She listened about my ME/CFS and didn’t push beyond what I could handle. We tried a few things that flared me up so she’d back down. She discovered my butt muscles weren’t activating. My left was much worse than the right. A muscle near my knee was acting the same way. I stuck with it for months but then winter came and winter kills me. I hibernate under blankets and hardly move. My body pain is severe so I don’t like to leave my house. I stopped attending PT.

Eventually I went to palliate care. They organized home physical therapy for me which was awesome. It made my life so much easier. My therapists were also great but after months, I made 0 progression. They said insurance won’t pay anymore until we find out what’s causing the issue. But no one is helping me determine that. So home PT was cancelled.

One year later with progressing pain and they repeated the MRI to find that the inflammation progressed. They also noticed it was in my femur neck bilaterally, previously missed on the first MRI. And it’s worse! Also bilateral joint effusions and paralabral cyst in left hip. The radiologist had no clue what it is. He said possible ‘odd pattern of a stress reaction’. I asked my primary if it could be cancer. She had the radiologist look again and they said NO. She ASSURED me it could not possibly be cancer. Could it be a fracture that is hairline? They said NO. Then what it is??!!

My ortho doc refused to see me for it. He only deals with labral tears. Ok, now what? Primary told me to ‘rest my legs’ since standing and walking make it worse. i’m already in a wheelchair for any distance and can’t stand long. So I rested for months. I was in a pretty severe flare up due to moving and the cold temperatures.  I had a nearly 2 week reprieve of some of the hip pain, though my leg pains never quit, but once I started pushing myself to walk more, the pain came back in full force. Since it’s hot outside, I’ve been going to the water park, scooter in tow, and sitting on a tube while moving my legs as much as possible to build back some strength. I noticed there is NO atrophy in my legs. In fact, they are pretty muscular for being on rest. I do seem to have atrophy in my butt muscles though. Not one doctor has evaluated me from head to toe in regards to any atrophy. Not one.

So no one is treating me for bone inflammation. No one is telling me WHY my bones are inflamed and progressing. No one is helping me so Dr. Google it is. And yet doctors get angry when we use the internet to search our symptoms. Maybe if they did their jobs we wouldn’t have to. I don’t have benign transient bone marrow inflammation as that resolves within a year. I’ve had this for 4 years with progression. Could it be leukemia? It runs in my family. My cousin battled it as a kid. My uncle died a few years ago and my brother is battling it now. But no, I was told my blood work was normal and it would show something in my blood. What about my swollen glands in my groin, leg, and neck? They did a CT scan and it did show small reactive nodes but apparently they’re not swollen enough to be concerning. I was also told they only look swollen due to my weight loss…. Umm, I went to the doctors about my swollen glands BEFORE the weight loss. I also noticed I had a fever on the majority of my doctor visits during 2018. No mention of this.

I was told my bone density scan was normal by my primary but my VA doc told me it was low normal in that area. I asked my VA doctor what to do and that no one is working with me in regards to this and she didn’t know!! Heck, when I told her about my weight loss and was worried, she told me to try the Keto diet…. 😑 I’ve dropped over 10% of my body weight and am underweight and I should diet?? That makes sense.

So weight loss (over 10%), swollen glands, lack of appetite, bloating, gas, abdominal pains, lower back pain, intermittent pain in my pancreas area,  severe sleepy fatigue that is new and different from my ME/CFS and fibro fatigue. Fevers more often than my ME/CFS fevers.  Sudden bouts of nausea that come in episodes. (those have actually gotten better, still get them but not as severe). Bladder pain and burning, yes I have IC but I feel tubes inside me that feel inflamed. It’s hard to explain but they are on the left and right side. It seems worse at night but I feel it intermittently and it’s painful. I thought them either my bladder tubes that lead to the kidney or my Fallopian tubes.

My urologist was ADAMANT that it’s NOT my bladder.  Prior bone scan, which was normal (I’ve read there can be false positives) showed a bright white focus in my lower left abdomen. They had no idea what it was. They decided on a possible diverticulm in my bladder based on prior MRI that appeared to possibly show that. (never mentioned in my report). They call it ‘practicing’ for a reason. Again, my urologist swore there was NO diverticulum. Once I told her about the bladder tube or Fallopian tube pain, she immediately ordered me to see GYN and someone different this time, so I did.

By the way, the CT scan to look at my lymph nodes showed a few scattered lung nodules. One was concerning. So now I have a follow up in September to see if they’ve grown. I also have very minor emphysema.  Emphysema at 40 is not very common. I’ve read it more typical in those with EDS. Still waiting on genetic testing for that. I’ve also had my breast looked at as I found a lump. I was told it’s my implants. MRI of my breast showed “stable enhancing focus in the posterior lateral breast consistent with benign
proliferative change” in my opposite breast.  Report mentioned repeat testing in one year. I was told my breast MRI was normal. Ok, with all my symptoms, I’m downright paranoid. What does an enhancing focus mean?!!  That’s normal??

My crazy is coming out. My fears and anxiety are on overdrive. Bone inflammation, lung nodules, enhancing focus in breasts… and now my recent news from my new Gyn.

I went to see my new gyn as my urologist requested. I told him about my issues, that I’m severely estrogen dominant with almost no progesterone and very little testosterone. Apparently, estrogen dominance can cause female cancers. He examined me. He asked if I knew about my uterine prolapse (grade 1). Umm, no. No one mentioned this to me. He asked if I was told about my thickened uterus. Ummm, no. No one mentioned this to me. He asked if I knew about the water fluid and once again, no. I’ve had recent ovarian cysts on my left ovary. I asked the prior Gyn oncologist about cancer since I had the weight loss and swollen glands. After all, he is an oncologist. He assured me it’s just a cysts. We watched it and repeat ultrasound showed it disappeared after a few months. It’s possible I had another shortly after that burst. I had gone to the ER for severe hip pain, pain radiating down my legs, lower left abdominal pain and pressure in my abdomen with lower back pain. He simply xrayed my hips, yelled at me for taking advantage of the system and sent me on my way. Woke up with blood in my pants the next morning.

I’ve had changes to my period, some spotting between as well. My ovulation pains have increased in intensity over the last couple years, something I mentioned to my prior two gyn docs and they shrugged their shoulders. I also have worsening cramps and I won’t go into details about the other issues that have changed. I’m thankful to have a new gyn who actually listened to me. Who actually noticed the issues down below. He didn’t bother to take a sample. He went straight to schedule me for surgery. I’m now waiting on that and waiting to know if this could be the cancer I’ve been searching for. I feel like it’s there somewhere. I feel like I’m dying and yet no one has been listening. Hopefully, for once, it’s all in my head. When you look at the whole picture, it does sound like cancer. I’m not crazy for thinking that. But what of my bone inflammation? Could this be linked? Could it have started there and moved elsewhere? I never have presented like a typical patient. I’ve pointed this out to doctors many times. I have oddities that defy normal medical science. I’m a zebra. I’m different.

Anyone else suffer with bone or bone marrow inflammation?

The medical system is often a joke to me. It needs an overhaul. Both in how doctors/nurses treat patients with their consumed bias due to those with drug addictions and mental health issues that they automatically assume we’re all faking and must be drug seeking or just a mental health case. Umm, even drug addicts get sick and need care as do those with mental health issues. Not everything is in their heads. And bias. They should have had classes on this as they’ve learned, “first do no harm…” which somehow got lost in translation and as we are all humans, they’ve allowed their biases to creep in and taint them. Now with us who are zebras, we’re often mistreated as those above. There is not enough training other than to assume we’re all horses which puts us all at a disadvantage when we really are…Zebras.

I should know about the gyn issues this month.  I should know about my lung nodules later this year. I still sit wondering about my bone and marrow inflammation, dealing with bone pain and muscle pain, ligament pain. No one is addressing that. Back to Dr. Google..

Anyone else have this experience? Any thoughts?

Yes!! I take Pain Meds!!!

Painpic

 

I recently read a very heartfelt blog in regards to pain management.  Her words could have echoed mine.  It seems that those who take pain medications have become villanised during the recent opioid ‘crisis’ sweeping through this nation.  As doctor’s slash prescriptions across the states and other’s stop supplying all together, where does this leave those who sit here in chronic pain land?

Did you know that studies show less than 6% will abuse their opioid prescription?  LESS than SIX percent!!!  Let that sink in.  I thought we were having a crisis here?  Ok, many people apparently die a day on opioids…  Please enlighten me as to how many of those death incurred were from following their doctors orders and not abusing their medications?  How many?  Why in the blue monkey hell does 94% of the population who take their medication as prescribed have to suffer for those who CHOSE to abuse their drugs?  If you blame addiction being the problem, then you don’t have a crime, you have a mental health crisis for those that do so.

Studies have also shown that those with TRUE chronic pain do NOT abuse their medication and many do not get high or sleepy when on them.  I’m one of those people.  I don’t get high on my pain meds, I get activated instead.  My doc informed that a small percentage of people get energetic on pain meds rather than sleepy which is why it is difficult to take them before bedtime and which is why I do NOT take pain meds at night.  I suffer till sleep takes over.

I’m also a rare patient indeed.  I have found my body to contain a rare double metabolic mutation on my CYP2C9 pathway that is responsible for metabolizing anti-inflammatories and blood thinning medications.  What does that mean?  I can’t take those drugs.  Less than 3% per one study and less than 1% in another study have that mutation.  It’s not well known.  I also happen to be allergic to Morphine, discovered that toroidal has no effect on me and I’ve exhausted pretty much all of the migraine medications available.  I also metabolize other medications differently and tend to have opposite reactions to drugs and extreme sensitivities to many others.  Meaning give me even the smallest dose of some drugs and they will send my system into overdrive with various horrible side effects that don’t tend to go away with time.  Other drugs you can pump me full of and they have no effect, like valium, a long acting benzodiazepine but  give me Xanax, a short acting one and it will make me really sleepy.  I was told that is not how it’s suppose to work, but hey, that’s how it works on ME.  Can you imagine going to the ER in pain?  Hey doc, I need this pain drug, that’s the one that works.  “I’m sorry, you need to leave, your drug seeking.”  I’ve had this experience.  You think maybe I just know what works for my body since it’s my body and I’ve lived in it for 39 years?

Never have I gone to the ER or the doctor asking medications for any reason other than as needed and intended.   I’ve taken opioid medications on and off over the last 17 years and not once have I abused them.  It wasn’t till my last flare when I was knocked off my axis and having to live in unending debilitating pain and muscle fatigue that I started using opioids full time.  But opioids don’t work for chronic pain says very few people in true chronic pain….  But the doctors seem to believe that.  What about the patients.  You can see article after article saying that these meds do not work for that and yet all the comments from real people say they do.  Opioids do NOT work for fibro.  Well, I have that too and it damn well reduces the pain enough for me to function so it works for ME!

TMI, but just to give you an idea of the reality of my life:  I suffer from: ME/CFS (Myalgic encephalomyelitis or Chronic fatigue SYNDROME), Fibromyalgia, Migraines, Chronic headaches, IBS-D, IBD (in remission), Interstitial Cystitis (A fun one), Tendonitis in many locations, esophageal spasms,  dysphasia, (constantly inhaling my own saliva and choking), GERD, Gastritis, significant ovulation pain that can drop me on my knees, painful periods, restless body….   Is that enough for you?  MOST of those cause me pain.  What I found is that opioid medications have helped ME with those conditions, almost all of them.  One drug for many problems. I’m also on a medication for nerve pain.  I have joint pain in almost all of my joints either all together or flaring up in various places throughout my body at different times.  And I haven’t even mentioned my hip pain. The most excruciating place on my body.  Imagine feeling like your groin bones are being twisted on and off all day long.  Imagine trying to walk when each step flares that pain up.  Imagine being in tears in bed at night because you can’t get comfortable due to the pain! No position helps unless I’m sitting criss cross apple sauce in my chair. And due to a failing medical community (in my opinion), I have yet to even be allowed an MRI to investigate it even though I’ve asked many times. Imagine having to buy your own cane as the pain is so bad.  I have bone pain.  I have nerve pain.  I have PAIN.  InvisibleIllnessElianaMeir Picture Created by : Eliana Meir

I also have fatigue.  Due to ME/CFS and fibro, I have fatigue.  Imagine going to a pain management doctor seeking pain meds for ME/CFS.  Most only know the name of Chronic fatigue syndrome and most of them that do, have very little knowledge of the condition as it is not typically taught in med school, very little money has been given for research for a condition that has effected a portion of people around the world.  As one pain doctor told me, “I would NEVER have put you on pain meds for chronic fatigue!”  I knew right then she was ignorant to my condition.  I’m not tired.  That is not the fatigue I suffer from.  The majority of those who hear those words, CFS, ASSUME I am overly tired and most likely lazy.  Let me give you a little idea of what I mean.  My muscles will feel like I have the flu without having the flu. Can you imaging having aching flu pain in your muscles all the time?  My muscles will fatigue so easily that if I push it, I will be paralyzed until my muscles have had enough time to recoup the energy it’s lacking.  It hurts.  Imagine holding your arms or legs out for hours at a time.  You know the quivering shaking painful feeling that builds up in the muscles the longer you hold them out there?  THAT is fatigue! So people can assume I sit here being lazy and ‘tired’ with my unknown condition and make judgements on me based on their own misinformed mind.  Muscle fatigue HURTS.  It will flare up just walking to my mail box.  Try going grocery shopping!  One time I was determined to trim a few branches (thin ones) that were growing and hitting our roof.  I sat on the roof with some tree trimmers, clipping the little branches until my fatigue was building up.  I was curious what would happen if I kept going.  Well, I learned.  I won’t do it again.  My arms became paralyzed.  I couldn’t use them. I couldn’t hold anything in my hands, I could lift them up, they flopped like a fish and I sat there on my chair (with help getting inside) for over an hour as the feeling gradually faded and I could use my arms again.  This, again, is muscle fatigue.  Now imagine that in your legs when you’re trying to go grocery shopping or any length of walking.  Now you know what I suffer.  I have a wheel chair for events that require a lot of walking as I wouldn’t be able to attend otherwise.  I am mostly housebound and when I’m not, I pay for those times I leave my home.  It can be paid for days while my muscles work to repair themselves.  Opioids have helped me with this.  They take away from the painful heavy feeling that comes on from use of my limbs.  I still have to pay for it, but it allows me to leave my home and attend my chores, cook dinner, vacuum, and just LIVE. I want to give a shout out to Jennifer Brea for being brave and bringing awareness to our condition by creating the documentary called Unrest! In limited theaters now and free on PBS in January.  I’m so proud of her!

So please tell ME how opioids don’t work for these kinds of things?  Do you live my life? You know what it’s like or how much better my life is managed when I have a medicine that actually does work for me?

The regulations that have come down in regards to opioids are not helping patients. In fact, it’s harming them. If they think the objective is to stop abuse, they need to know that they will only create more abuse by taking true pain sufferers off of the medications that reduce their pain.

If a person is going to abuse a drug, they will still abuse a drug even if it’s taken from them. They will just find something to replace it. Stopping true pain sufferers from having a medication that works for them will only create more pain and more addiction as they seek out alternative sources to stop the pain. This is my body. I have to live with it. Why can I not chose what to put in it? Why can I not have a say in my own healthcare? Why are people being left to suffer and told to see a shrink, that will help with the pain.

Not only do we deal with doctors judging us, but pharmacies as well. It’s not the first time I’ve been looked at like I’m doing something wrong. They too hold strong opinions without knowing your history. It’s a sad world when one finds something that works, and yet it has such a strong stigma attached to it. If I did NOT have my opioids, I would be living illegally or would be bed bound. I have two children to take care of. How am I suppose to do that from my bed, riddled in pain and suffering? I’m hearing the VA is stopping the use of opioids. Many got cut off cold turkey after long term use. One of those people from our group committed suicide. The pain is real. The support is lacking.

What studies are finding is that even though opioid use is down (I wonder why, hah) the crisis is getting worse.  People are left crippled in pain, others are turning to illegal drugs, thus making the situation worse, and even more alarming is the rise in suicides taking place due to the pain being too much for people to bare.  They are creating an even bigger crisis!  Doctor’s that DO want to help patients are being made to jump through hoops in order to do so.  They are on a watch list and as a patient, you can only pray that the hammer doesn’t come down on your doctor’s head leaving you existing like those who have already been cut off and drowning in pain.  Patients are being passed around from doctor to doctor as each tries to get the other to prescribe the pain relief needed but won’t do so themselves due to fear of this barbaric system.

Another major point is that opioids can cause physical dependence.  This is one of the reasons sited for stopping the use of opioids.  It will be a challenge getting off of those drugs in the future.  Some will build a tolerance to the drug and will need to continually increase it to achieve pain relief.  I agree that this is an issue.  But please tell me what alternative method of pain relief will NOT cause the very same issues they blame with opioids?  Do we not become dependent on Gabapentin, Lyrica, Cymbalta, and other anti-depressants they’re passing out like candy in hopes of relieving some pain?  Have you actually read the studies on those drugs?  Essentially, per one study on Gabapentin, 30% of patients achieve pain relief on this drug.  Typically going from a 7 to 8 level pain down to a 4 to 6 level pain with use.  Not many actually look at those numbers.  You may very well be in the 70% that has little to no relief.  Also true is that many have to continually increase the dosage to maintain pain relief.  And getting off of this drug!? Wow, the side effects of reducing the meds or even being on them are intense.  How is this different from opioids?  I was on Cymbalta and it did nothing for pain, in fact it was the WORST drug I have ever had to get off of.  I was enraged, full of anger, dizzy, felt drunk, nauseated, and suicidal even reducing this medication at the slowest possible rate I could.  It was ugly and I will never touch that drug again.  I tried gabapentin at one pill a day at 100mg.  Anyone taking Gaba will know that that is minuscule compared to the 3800mg most will end up taking.   One pill and I woke up with swollen eyes that were oozing liquid, dizziness, blurry vision, and chest pain.  Can you imagine had I taken a typical starting dose?

So my point is that we become dependent on most drugs given.  Your body adjusts to the chemicals it’s taken and getting off even the simplest drugs like Nexium will cause withdrawal in some form or another.  Our body has to readjust to the medications being taken away from our system.  So why I can’t I chose which drug I want to risk?  Why can’t I have a say in what I chose to put in my body?  Especially when I know what WORKS for me?

The stigma is real, the pain is real, and the problem is getting worse.  The pendulum has swung in the opposite direction and it’s far worse than it was before.  Because we are left suffering.  No quality of life.  I’ve made the decision that quality is much better than quantity.  It should be my RIGHT to chose that.  We should not be left to suffer.  What’s the point in asking a person’s pain level if they don’t care to correct it?  So here I sit, in pain as I wait for my next prescription, putting me back on my prior dosage after dropping to try something new that did not work for me.  So because of the laws, I can’t get relief now.  I have to wait two weeks for my next allowed time to fill so I can get the relief needed for my pain.  Today is my daughter’s birthday party.  I can only hope that my medication will get me through so I don’t have to suffer in front of others and I can enjoy her day as I count down to the day I can get a bit more relief again.

 

The link to Unrest:  https://www.unrest.film/

 

For now, I’m going to publish this.  I will pull up the studies and add them to my blog when the time allows as I need to now focus on my child and making her day as special as I can.  I will add them though.  They need to be seen.

 

https://medlineplus.gov/magazine/issues/spring11/articles/spring11pg9.html

http://europepmc.org/articles/PMC4026559

http://ajph.aphapublications.org/doi/10.2105/AJPH.2017.303906

https://www.researchgate.net/publication/262695649_The_damage_done_by_the_war_on_opioids_The_pendulum_has_swung_too_far

Invisible Illness…

The pain is there, inflammation too, but doctor’s are clueless, what should I do?

I have an invisible illness that has taken hold, slowly crippling my way of life. I had my dreams ahead of me, a future to look forward to.  I was in the gym getting myself in shape, discovering that I had a love for running. I was studying for the LSAT, getting ready to start a new journey, one that I had been looking forward to for many years. Master’s degree down and Law school in my future, perfect for my type A all in type of personality. I’m no wimp.  I like to get my hands dirty. In fact, I’m a bit of a micro-manager.  I rather do things myself, I have high standards, no one will do it as well as I could.  But all that has changed. I’m not who I am anymore. I have an invisible illness.

Probably one of the most difficult things with an invisible illness is not what I suffer with daily, but the doubts in my doctors eyes, the suspicion, the questions. How do you prove what you feel when pain can not be measured? When holding up your phone in bed causes your arms to throb, cleaning causes your body to flare up in pain, weighed down by invisible weights pulling you towards the floor. Just walking up the stairs with those heavy weights is enough to make me pause and rest, draw in my breath, and gather my strength.  Noises smothering you till you just want to crawl in a quiet dark hole and let your mind be at peace. Movements overwhelming, filling your vision till you just want to shut everything out and rest.

I’m hypersensitive. I feel every ache in my body, my bladder only slightly filled yet the sensation is every present, a tiny gas bubble searing it’s way in my insides, my heart beating against my breast, a tiny hair irritating my cheek, the way my breast squish against my bra, the artery pulsating in my stomach, my dry eyes, painful joints, aching muscles, horrific stomach pains day in and day out. I feel everything. Surrounded by a sea of sensations waiting for my next escape. The drugs dull the pain, the sensations, the heavy fatigue, pushed at bay for a few hours relief until the effects wear thin and the feelings return.

I have an invisible illness, one shared by many but never the less, ignored and pushed aside, treated as though it is a disease of the mind and not physical, physiological or neurological in nature as the symptoms suggest. Remember when epilepsy was a mental illness, locked up in an institution because doctors didn’t know how to handle what they couldn’t measure?  History repeats itself.  Rather than telling the patient that technology has not caught up with the process, they blame them instead for PTSD, anxiety, somatization, and depression. Anxiety may be my cross to bear, but logic rules my mind. Can they not handle defeat? Do they not know that they are not infallible, not all knowing and all mighty?

One day they will look back and know.  They failed us.  They denied us, ignored us, and left us to rot. They had no answers, but they will…one day.

 

Please share, comment, or like on this post.  Most of my posts are just for myself as writing helps with my frustrations, but I think my story represents a large number of people in this world.  Even a quick comment to say hello!  I just want to see if this post is being seen, if you can relate.