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?

The feeling of dying..

I’ve been dying for about a year now, at least I’ve felt it since then. I have a lot of health issues and developed an odd vibratory sensation back in 2015. At it’s strongest, it can be felt by others on my legs. I feel it everywhere though, lightly in my upper body but it’s like I’m hooked up to an electrical current and all my muscle cells are dancing. It was interesting at first, then a bit annoying, now it’s an awful feeling that not one doctor has been able to explain. It may be dystonia. I’m still waiting on genetic testing..

On a flight home from Texas in 2018, I felt a lump in my left thigh area. It was a swollen gland. I went to my doctor after if it didn’t go away and she said it was probably due to a small shaving nick she saw on my leg. I knew it wasn’t. I waited the two weeks and informed her that not only did it not go away, but others had enlarged in my groin area. My blood work was perfect so I was sent home. Looking back, I had a slight fever at the appointment.

I started dropping weight. At least I noticed I had lost a little weight but it kept on dropping until I eventually went from nearly 140 down to 108 at my lowest. The doctor then blamed the swollen glands on my weight loss. Keep in mind, I noticed the gland before the weight loss and they only enlarged more. I lost my appetite and felt full quickly. I was bloated and gassy. Eventually after arguing with my doctor, I was finally sent to hematology oncology. My brother has leukemia and my uncle had just died of it a few years before. It runs in my family. I also had an enlarged bartholin gland on my right side after having the left removed in 2017. The right had never bothered me before.

I developed pain in my lower left abdomen and she sent me to a gyn oncologist. He found a complex cyst and told me to come back in a few months to evaluate. He wasn’t concerned about all my symptoms. He said everything looked good. I felt in my heart I had cancer. Maybe ovarian cancer? He dismissed me. It couldn’t be that. I’m young.

Hematology doc was nice and listened to me. Unfortunately, because my blood work is normal, there wasn’t much he could do. In addition, prior (2) MRI’s showed bone and bone marrow inflammation in my hips and femur neck with progression. My palliate care team wanted a biopsy of the lymph nodes next time I went into surgery. But I have no surgery scheduled. The gyn said he could removed the bartholin gland if I’d like and do exploratory for endometriosis since I had some symptoms of it but he wasn’t concerned. He’d remove a gland for them as well. His laissez-faire response had no urgency, and assured me it wasn’t cancer, even when I pointed out the darker patches of skin on my vulva. So I left in frustration. The cancer has to be somewhere. I also noticed most of 2018 doctor visits had a low grade fever. But no one mentioned this to me…

My CT scan did show some scattered nodes in my lungs. One in a suspicious location. The pulmonologist is great. He will be doing a follow up in 6 to 9 months to see if any grow. He took me seriously and treated me respectfully. An incidental finding on a bone scan had shown a bright white spot on my lower LEFT (not right) abdomen. They had no idea what it was and determined it had to be a bladder diverticulm barely seen on prior MRI. So I went to urology. I let her know and she was adement it was not my bladder as that would have been seen on prior scope (2017). She was certain I needed to see GYN.

I went back to GYN and also showed a lump I found in my breast. He thought it was a weird part of my breast implant. He again dismissed my symptoms and said basically to relax. So I went back to urology after feeling tubes inside me burn intermittently when I urinated. I felt it worse at night and it was quite painful. I thought it was either bladder tubes or my Fallopian tubes. My urologist once again said, It’s NOT my bladder and that I NEED to see GYN. So she sent me to someone else. The referral came in quickly and I saw a new Doctor. He was great! He listened. He asked a bunch of questions that my oncologist never asked me. He asked about cancer history. He asked about my children, my sex life, ect. I told him how I’m estrogen dominant and have almost 0 progesterone and testosterone. I had just found that out due to my pain management doctor looking to add hormones to help with my pain. Well, shit, estrogen dominance can cause cancer.  I also started developing really bad leg pains that radiate down the back of my legs, sometimes the front. I have had hip pain for 4 years (damn bone inflammation of unknown origin and not one doctor treating me for that), but the leg pains like this are new as of 2019.

My exam revealed a grade 1 prolapse of my uterus. That sucks. It also revealed a thickened uterus with watery fluid, was very painful and irritated. He didn’t even take a swab was immediately scheduled me for exploratory surgery. I read about uterine cancer and the symptoms of that. It makes sense. But why of all people, would a GYN ONCOLOGIST NOT think of this??!!!  How could he dismiss me with all my symptoms going on?! My new doc is retiring so his colleague will do the surgery. I want my uterus out. I assume the prolapse will continue to get worse and sex already hurts so be gone! I might ask to have my left ovary removed as well since I have had pain in my lower left side and cysts there. Just to be safe. I feel like I’m dying. I’m just hoping it’s not too late…

Or maybe, I’m just a hypochondriac…. They sure make me feel that way sometimes.