Hi my name is Lenny im puzzled i have had cronic pain since I beat my first desiase alcoholism i stopped drinking in 2004 Thanksgiving day then found out i had a dead liver i walked in pain severe pain till 2008 then 09 wife saved me getting me a new liver amen.. I’ve been out of surgery for six years here is the puzzleing???? Getting sober is awesome but you don’t slow down and think about drinking was my pain pill for 34 years i killed my pain with buddy and Jack but I also started a new page of pain my old injuries started to appear nurothopy cronic arther three slipped dics torn ligament in left elbow finally me knee i tore that at twenty im 49 now and i just got that replaced april 14 2015 now at this point im on pain meds doctors are supposed to tell the paitiont to ween your pain meds before you get operatied on mine my doc forgot???? So imagine your leg is broke and you have no help no pain reliever thats how i felt when i woke from surgery no relief i started screaming the pain was deadly my whole bodey constricted pulling muscles in my knee all because they didn’t tell me to ween. Off my pain meds sorry im so pissed now.. well my knee is not well and im in cronic pain again i quit oxy cotin weened my self off the meds im taking tramadol and mind over matter for pain i agree shut up to for now there is know cure I quit the addiction to meds and grew some larger balls for my wife sorry gram…… finally i just want to know the writer of this page do you take anything for your suffering or recommend anything I take tramadol fifty mg does not help i want to try the patch if you and others help i would appreciate it thank for listening to hope i didnt piss any one off but this relieved some pain!!!!! God bless everyone

Chronic Pain in the Education System

They say that being a teenager is hard. And, I can attest to that, it’s been the hardest part of my very short life – and that seems consistent with those around me too. The pressure that is placed on the ones who want to achieve is excessive: grades, exams, uni applications, meeting deadlines, the lack of sleep, the excess of work to complete. The current education system places us under extreme conditions, pushes us to the breaking point, it stretches us beyond limits – and in some cases, breaks us. I see way too many of my talented and intelligent peers crumble under the expectations and pressure set to us to get a grade that is suitable to get into academic pathways such as law, or engineering, or medicine.

This is more than hard enough without constant debilitating chronic pain.

To get up in the morning and know that the day is going to be difficult is something that I feel is somewhat consistent throughout my peers, though I feel this way for a completely different reason.
I wonder if I can get out of bed and get my clothes on.
I wonder if I can eat breakfast without dropping it everywhere or feeling sick enough to regurgitate it back into the bowl.
I wonder if I can make the bus ride without having to take a stop and get a breather.
I wonder if I can sit in class and take all of the notes.
I wonder if I can pull myself away from the pain well enough to follow what the teacher is saying.
I wonder if I can sit the assessment to my full ability.
I wonder if I can make a day without having to remove myself from the classroom in an attempt to stop myself breaking.
I wonder if I can complete all of my school work that has been assigned to me for that night.
I wonder if I can make the night without the need of an ER doctor.
I wonder if I can get more than four hours sleep.

I wonder if I’ll make it.

The worst part about all of this, is that I know I can do it, and I know I can do it well – but the thing that is stopping me is my own body, the largest betrayal known to man.

You could walk past me, and you’d think I was a completely normal person, going here, and going there, though what you don’t see is the internal warfare. The constant battle between yes and no.

And the drugs specifically given to me to make me better, ofttimes do the exact opposite. Can you imagine an essay written by a brain clouded with heavy opioids? (Spoilers: it’s not pretty, as my literature teacher knows all too well). And the judgement that goes along with the drugs is especially evident. You get pretty good at doing a Taylor Swift and shaking it off, but it is still always there. They don’t know what you’re taking, which is probably for the better, but when you’ve got a rather extensive regime of drugs to take at all different times during the day, you’re subject to some speculation.

Aside from the drugs, the constant questioning of just about all of my actions really begins to take a large toll. There is a fine line between curious and invasive, and that seems to get overly clouded when in the realm of chronic pain.

The pressure that is placed on students is exemplified majorly by the presence of chronic pain, and, unfortunately, that is largely misunderstood, and seems to be passed over when assessing students in their adeptness to situations. I can work at the same level as the average (when I’m functioning), but I could be working at a far superior level without the burden of chronic pain, and that is what really gets to me.

How is it that some manage to be dealt the bad hand, and are expected to win the game?

The name of my monster

I’ll try to keep this brief and would appreciate any input from people, especially those with similar symptoms who perhaps found a diagnosis somewhere down the line.

Background on me: I just turned 24, I’m a final year med student and I’m set to graduate may-june of 2016 (God Willing). I used to be pretty active, take very long walks, go kart-racing and loved any sort of vigorous activity.

About 18 months ago, I started having recurring lower back pain on exertion. Things like doing dishes, picking things up and putting them away, walking for 15-20 mins etc. It wasn’t regular pain like the sort you get from a muscle strain, it was of a very different character. It started off sharp and then tapered into a very dull gnawing ache in my lumbo-sacral region but it would be relieved by rest.

About a year ago, this pain was no longer “recurring” but rather a constant ache that I classified as either “tolerable” or “intolerable”. I had trouble doing the simplest things and i couldn’t walk or stand or even sit for too long. 6-7 months ago this was followed by tingling, numbness and heaviness of my right lower limb along with very obvious weakness.

Today, my pain is always at a level 6-7/10 on the severity scale (hence it has now become the new 1-2/10 for me since my scale doesn’t have a ‘no pain’ number), I can stand/walk about 7-8 minutes before the pain becomes severe and I get a limp within 15 minutes which becomes more and more pronounced the more i have to walk/stand. Along with this, my leg also gets numb and heavy and eventually, becomes nothing more than dead weight that I have to drag along.

Seeing as how I’m in the medical field, I diagnosed myself with having a prolapsed disc or some other sort of lumbosacral pathology with nerve impingement leading to sciatica. The pain was unrelenting so I got an LS and pelvis MRI and it showed a very mild annular tear with broad disc protrusion and some very minor degenerative changes in L5-S1. We were told by multiple doctors that we consulted that these changes were quite insignificant and didn’t at all explain my symptoms.

This last week, I went to an excellent ortho who noticed that my clinical examination signs and description of symptoms warranted another MRI, this time for brain and full spine to rule out multiple sclerosis. My sister is a doctor and I myself knew this was highly unlikely and the doctor was just being thorough by admitting me and seeking a neuro consult. The neuro also believed it was highly unlikely but wanted to rule it out anyway. I was excited because I thought that even though i was sure it wasn’t MS, this MRI would show us what it actually was and the mystery would be solved. But I wasn’t that lucky.

The MRI came back unremarkable. I should’ve been happy like my family was, but I wasn’t. The neuro told me that it was “nothing” and I knew she meant there was nothing neurological but the tone in which she said it made me think that now I had lost credulity with professionals because they couldn’t find a clear medical explanation. I often given this analogy that “if there is a monster in my house that i can’t get rid of, I’d rather know where it is at least”, which means that since i do have pain and it’s not going anywhere, I’d at least like to have a diagnosis or give a name to the monster.

It’s very hard for me to get narcotics because no one wants to give a 24 year old narcs and if I hear one more doctor tell me to take an NSAID and “not jump to heavy pain meds”, I will tear my hair out. It takes about 120mg codeine for my pain to be influenced at all. Even morphine shots don’t take the pain away entirely anymore. The last time I remember being pain-free was the first time I got a morphine shot a few months ago and those magical 40 minutes showed me what a pain-free existence was like because I had forgotten. There are people out there, majority of people actually, who live in that bliss almost everyday! and they don’t know how blessed they are!!

My previous semester at med school was awful because I had to be sent home or had to go to the er multiple times from pain exacerbation. Ward rounds became torture to me because by the second bed we’d go to, my body was done and I can’t even begin describing how difficult clinical examinations were. I was almost not allowed to give my exams because of my attendance (even though the days i missed were mostly times I was sent home by doctors because of how pathetic I looked dragging myself along, using the wall for support with pain-glazed eyes). Thankfully I gave my exams and got through the semester and now I’m on to my last one which is going to be brutal and mostly on my feet, and I have no idea how the hell to do this. I can barely shower without needing to take rest afterwards and little things like combing are now an ordeal.

I want this monster gone.

I’m a lucky one with LPHS

I wanted to write my story here, but it is super long so you will get the abbreviated version! I have had LPHS for almost 20 years. I have been to hell and back. I lost my friends and some of my family, my fiancee, and my career. If it weren’t for my parents, I probably wouldn’t be here today. I want everyone to know that there is hope, and I am proof of that.

When I was diagnosed, the treatment for LPHS was auto transplantation. With a 10% success rate, I said no thank you. I was then shuffled from pain clinic to pain clinic, because the docs said they couldn’t help me, most just looked at me like I was a drug seeker. My nephrologist was in Ohio, but I live elsewhere in the Midwest. I have taken every narcotic that you can take, not to mention all the other medications that doctors prescribed off-label. I also had many procedures (ultrasounds, CT scans, IVP’s, cystoscopies and a kidney biopsy that positively identified the LPHS). Then there was the numerous experimental procedures.

I was at my last hope of having a pain pump implanted, when my nephrologist suggested I see their pain doctor for a procedure called Pulsed Radiofrequency Ablation (PRFA). I went for the consult, and the doctor said I was a candidate for the PRFA, but not to get my hopes up. I was the sixth person with LPHS to have this done, and the results of the other five were not good. And of course being experimental, my insurance company did not pay for the PRFA. I didn’t care, I needed it done. Made a payment plan with the hospital, and had it done. My doctor said that it would be a success if it lasted 3 months and I could get off of 75% of my medications.

The PRFA lasted for 9 and a half months and I got off of 95% of my meds! I was thrilled! The good news is that the PRFA can be repeated. The bad news, is that you don’t know if it will work again. I had it repeated, and it has lasted 7 and a half years. Yes, I said YEARS! I am completely pain free in my kidney. I’m one that passes a lot of blood clots. I do have pain when the clot is moving down the ureter into the bladder and then out of my body. This is why I have to stay on a maintenance dose of morphine, to help when I pass the clots. But the dose is so small compared to what I used to take before I had the PRFA.

My life has completely changed. I now have a husband and a child. I wanted to share my story to let you know that there are options out there. When I was diagnosed almost 20 years ago, there was not many options for treatment.

I am not saying that the PRFA will work for you, but it is an option. All I know is whatever you do, do NOT give up. Keep searching, keep trying and keep your head up. Find what works for you.

A Teen in Pain

My name is Dani Alys and I have been in pain every day of my life.

When I was born I was a regular baby; 8 pounds. Actually pretty heavy, right? Well for the next few months, I did not gain a pound, not even an ounce. I did not grow. I would not stop crying.
We were living in Taiwan at the time and the doctors there are not the best. However, eventually they found a medicine that worked on me. I was still a very fussy baby, but I was finally growing.

Three years later, age three, my family moved to Maryland in the US. The first night of living here I had my first asthma attack. From then on, even until now, I am unable to be active or cold without getting asthma. It has taken me out of several sports that I love and has made me miss innumerable days of school.

Four years later, age seven, we were now living on Long Island. This year was extra rough for me.

At the beginning of the year, I had the biggest asthma attack I had ever had. It landed me in the ER and was absolutely terrifying. I was gasping for breath, unable to get any oxygen into me.
What else happened that year? Oh yeah, the thing that changed my life. Celiac disease. So for my entire life I got huge stomach aches whenever I ate. Eventually we checked it out and I had an endoscopy. This alone was pretty scary for me because I was only seven and I was having tubes stuck onto me all over my body and I was going to be put to sleep.

A few weeks later, they diagnosed me with Celiac disease. In case you don’t know what that is, that means I am allergic to gluten. Meaning no cake, no cookies, no pasta, no bread. It took a while, but I eventually got used to it. Now, as most of you know, “got used to it” does not mean I like it. It does not mean it is not hard. It means I learned how to deal with it. Kinda my life motto right now.

Five years later, age eleven. My asthma was still terrible. But my body decided to give me another eternal problem! Dizziness. I faint every couple months. I black out. I have tunnel vision. My vision goes blurry frequently. Yay, another problem to add to my list.

One year later, age 12. At my school we are forced to do two sports a year. Even though I have asthma, they made me do track. After two weeks I had a large lump on my knee that hurt so much. I was out of track, but my parents wouldn’t take me to the doctor. Finally after almost a month, they took me once I was literally limping everywhere I went. The doctor put me on crutches, and it was supposed to go away in a week. I ended up doing 2 ½ months of crutches. It started to feel a lot better so I did an adventure camp where I went hiking. Then the entire thing started right over again. I tried a gel that was spread on my knee for 15 minutes, 4 times a day. I did a patch sort of thing. I did PT for 2 months. NOTHING worked. To this day, I have to wear a brace everywhere I go because there is no way of fixing it. They said it was called Bursitis or something like that, and that if we surgically removed the fluid in the large lump on my knee that it would come right back.

Three years later, age 15, 9th grade, 2014-2015. Probably the worst year of my life. I’ve had medical problems all of my life, but this was just over the top. In January, I started to have intense stabbing pain in my stomach. I was nauseous whenever I consumed absolutely anything, even water. I was so dizzy that whenever I got up I felt like I was about to collapse. It often felt like everything in my body was being squished into one ball, making me unable to do anything except lay in a ball on my bed. I have huge panic attacks at least once a week. I always have to concentrate on my breathing. I have some sort of infection in my throat that hurts on and off and makes it excruciating to swallow anything. I have massive headaches a couple days a week. I have had diarrhea all my life, but it’s non stop now. I have heartburn in my throat.

I have gone to four new doctors in the past few months. Every doctor says the exact same thing. “Try this medicine and wait a few weeks to see if the pain goes away.” I AM DONE WAITING!!! I went to the doctor today, June 26, and they told me that there is no other medication and we just have to keep waiting to see if this goes away in time.

I missed three months of school this past year, and because of that I have to repeat 9th grade. I am still in intense pain every single day. I do not get a break.

If you passed me in the hallway at school, or even had a class with me, you would think I am a perfectly normal person. I am very happy most of the time and I actually love school. I always get straight A’s. I have always been the top of the class. From a glance, I am perfectly fine. Well guess what? I’m not.

I love writing, I love reading, I love school, I love to hike and bike and swim and play basketball and sail. But I can’t do any of it anymore. I want desperately to just be a normal teenager! Is that too much to ask?!

The worst thing for me is when people think I am faking. LIKE DO YOU THINK I WANT TO SIT AROUND ALL DAY AND MISS OUT ON EVERYTHING?! I rarely get to see my friends!!! I rarely get to see anyone!!! And honestly, I hate it so much!!! I just want it to be gone! I want to be a normal teenager!!! UGH. Every single medical problem I have is piling onto me and I have simply had enough.

To all of you who have some sort of chronic pain, stay strong. My friend wrote “Don’t give up, don’t give in” in a card to me once. Repeat that to yourself when things get tough. You can do this. Yeah, we are all struggling with this. Yeah, it is so insanely hard. But we can do this. I am praying for each and every one of you.

You may be thinking that I just went from an angry, worn out teenager, to an encouraging, happy girl. Well, that’s just me. Yeah, I am completely, utterly worn out. But I am also very blessed with amazing friends and family. As all of you probably know, there is a very big difference between happy and healthy.

If any of you want to talk, I am so up for that. I would love to compare stories and we can encourage each other and help each other get through these rough times. Especially if you are a teen, I am so here for you.

Chronic pain with no diagnosis

I have been suffering debilitating lower back pain since 2007. I have had facet nerve injections, MRIs of lumbar, cervical and brain and ENGs. Everything keeps coming back negative. I have no life. My life consists of two heating pads and very strong narcotics. I have bipolar disorder, generalized anxiety disorder and extreme depression. I am so tired. I have an 8 year old son who suffers because of this. I cannot go outside and run and play with him, I can’t ride bikes with him, I can’t do vacation with him and it is totally unfair to him. I cannot clean my house. I start and might get one room done and then il down for two days. My mom tells me to get up and clean and go for walks etc. It’s almost like she thinks I’m lazy and just love laying around on my butt watching the same crap, different day on TV. I am just soooo soooo tired. The pain is obviously not going anywhere. I have begged for a myelogram and/or contrast MRIs. My doctor refuses to perform these tests. I had an appt with a neurosurgeon two weeks ago and he said I had excessive rigidity in ALL my joints and ordered the MRI of my cervical and brain because the lumbar was completely normal. I called the day I had my MRI to schedule a f/u and they had scheduled it for 6/29 but neglected to inform me. I asked to speak with scheduling so I could get an earlier appt. I called again on that Friday and yesterday and noone called me back. I finally spoke with a supervisor and she r/s it for 6/22 but she also looked at my MRI report and said it was unremarkable. I know she is not the Dr. But it is so disheartening. I don’t know what to do. Please pray for me.

My Story Matters

In February of 2013, I began a new career as an interventionist and street outreach employee. I had previously been an emergency dispatcher for 8 years and a part-time police officer for 2 years. This new opportunity was quite a pay cut for me but my dream position. I would be outside all day, responding to calls dispatched by the largest police department in the state, and helping people experiencing mental health crisis’s. I felt like I was born to do this work.

About a month into my new position, I began to experience pain up the side of my legs and in my calf muscles. At first I thought it was just getting back in shape. With the career change, I would walk up to 14 miles a day. I just ignored the pain in the beginning. I have a high pain tolerance due to having several other painful conditions. The main one being interstitial cystitis. Basically my bladder doesn’t have a lining.

The pain continued and became way worse. My symptoms expanded as well. For example, I was experiencing numbness in my feet and my calfs literally felt like they were going to explode. I finally couldn’t take it anymore so made an appointment with my orthopedic surgeon who had previously performed both a knee and ankle surgery on me. Unfortunately it was a 2 month wait to see him so I saw a PA at his office.

At my first appointment, I explained the pain and numbness and that I have had plantar fasciitis for 12 years but this pain was different. The Dr was very short with me and said I needed the layering method and needed to attack the fasciitis from all angles. I explained I’ve done that for years and this was different. She blew me off sending me to PT and home with gel heel cups. At one point she stated that my calf muscles were really tight and I may need to see a massage therapist to work on them. When I asked if insurance covered that she stated: “honey sometimes in life you need to pay for things!”. Easy for someone making a PA’s salary to say.

Needless to say, I felt defeated. Little did I know, this was the beginning of a very long and windy road.

I started going to Pt immediately. Within a couple visits, the therapist told me that he thought I had something called compartment syndrome. He told me it was rare and the drs may not believe me at first but he was positive I had it. I was finally able to get into my original surgeon within a month. He stated the condition was rare and he highly doubted I had it. He sent me instead for an EMG (nerve testing). The EMG came back negative and of course it was several more weeks to wait to go over those results with my surgeon. When he came into my room, he said I think you have a very rare condition called compartment syndrome (have to love how no one listens to patients it seems) and I needed to see a Dr who performed pressure tests to confirm it.

Of course it was several more weeks before I met with that dr. If you aren’t familiar with the compartment pressure tests, be glad. They basically take this huge needle with a gauge on the end of it and insert it in each of your four compartments on each leg after numbing you. This gives your resting pressures. They then had me get on the treadmill and tell them when the pain was worst. It only took two minutes for the pain to show its ugly head. They asked if I was sure…trust me I was sure.

Another note to add is that while you are on the treadmill, blood is running down your legs. I don’t recommend wearing a new pair of socks when having this test. They then retake the pressures. Normal pressures are around 5. My resting ones were in the 30’s and after 2 minutes, in the 90’s. The Dr told me I shouldn’t be able to walk 10 feet let alone miles everyday.

I was then referred to the orthopedic surgeon who told me all the details of having my fascia released. He told myself and my Mom once the compartments are released then there will never be any problems again. He also said I’d be out of work a max of 3 months. At the time 3 months seemed like forever. I’d never taken more then 10 days off since being an adult. My boss was amazing about everything. He even wrote me an email saying how valued I was as an employee and that it seemed as if I had done the job all my life.

Fast forward to August and it was finally my surgery date. My date had been pushed up two times due to my pain level. The surgery took a couple hours but the dr told my Mom and I that everything went smoothly. It was shockingly an outpatient surgery so we headed home to my parents in NY which is 2.5 hrs away.

I honestly don’t remember a ton about the ride home. When I arrived home, we were able to get me in the house. My Mom had my Dad stay at our other house (my parents live in a house on the property that she manages so we still have our house I grew up in) with our 2 dogs. Luckily I was still pretty doped up at that time and slept pretty well through the night. The next following days were regular post op days.

My Mom was a gift from God (she always is anyways) when it came to caring for me. Lots and lots of icing and always elevated. I was unable to get out of the chair by myself so she would have to help me and then I’d shuffle along with a walker. The first week or so, my right foot was at a 90 degree angle outward and I was unable to straighten it. The pain was well pain.

I was taking oxy for the pain so that helped. The high pain tolerance helped even more. I later found out that this is considered a very painful surgery for most people. About 4 days after my surgery, I noticed I had a UTI. I am prone to them because of my bladder condition so have a standing rx for them. My Mom drove the 30 minutes to the pharmacy for me (like I said, she is a saint). I was able to take the rx around 1pm that day. Around 5pm, I began not feeling great. I had a bout of diarrhea and then a terrible tightness in my chest. I went to lay down and it got progressively worse. I began shaking so bad that I could barely speak. I was freezing cold and felt like my chest was going to explode. I remember thinking this is what it feels like to die. My pulse was 104 and my blood pressure was around 200/100 and something.

Long story short, the ambulance brought me the hour ride to the hospital with my parents. We later found out that I had developed an allergy to the rx I had always used for my UTIs. Add that to my list of issues.

The next couple weeks were filled with me developing a reaction to the dissolvable sutures so my body “spit” the stitches. It was quite painful and very nasty looking.

I ended up staying with my parents a week longer than anticipated. The next month or so was filled with lots of pt. It seemed like the pain was gone but it was hard to tell from the post op pain. The spitting of the sutures delayed pt at one point as well. Before I knew it, the 3 months had come and gone.

I went from short-term disability to long-term. I went from making over $45 grand the year before to around $17 grand a year. It makes you realize just how fast you can lose everything. If it were not for my parents, I would have for sure been homeless. I also have a horse (Ernie) which is my child…my life. I still am able to have him thanks to my parents and amazing friends (who I also consider family) who took Ernie in at their farm.

Overall the severe pain seemed better as did the numbness. Unfortunately, my left foot went into a major flare. My ortho sent me to their podiatrist. This of course took forever to get in and lots of pointless appointments. They put me in a walking boot for several wks. This was followed by 2 removable hard casts and being completely non-weight bearing for around 4 months. When it hit about 8 months of being out of work, it finally set in that I was not returning to work. It was very difficult and sad for me to accept.

My boss was again amazing. They had held my job for me the longest they had ever for an employee that had only been there for 6 months. By August, I underwent a partial fascia release of my plantar fascia of my left foot. Several more months of a boot, forearms crutches, and a knee walker followed. Still, zero relief. I began going to a new PT who was highly recommended by Mary and Jerry who own the barn where Ernie is.

We made a small amount of progress and I went back to my original ortho from before my surgery. He put me in a walking cast for 8 wks and gave me hope again. That was short-lived when after the cast was removed he told me he had nothing else for me. I saw another specialist who was brilliant. He said the surgery should not have been performed on my foot with my track record. He also said that they had injected my heel so many times that there was no fatty pad left there. He agreed I needed to see a vascular specialist and continue with pt.

December of 2014 I headed back to pt. The ladies there were amazing. They agreed that many blew me off because of my weight which angered them. I had gained 75 lbs since the leg surgery. Ive always battled with my weight but working out has helped me keep it down. I hadn’t been able to be physically active in well over a year. They even took pictures of my legs and sent them to some of the best vascular pt specialists in the nation. They agreed my legs were not from being overweight. There was some sort of mechanical flaw in my body but not sure what.

I finally was sent for an ultrasound, doppler testing, and etc at the vascular department to check for intermittent claudication (where your blood flow gets cut off). I won’t even get into how terrible the tech was. He said there was nothing wrong and the dr probably wouldn’t even be willing to see me.

After filing a complaint and my pt reaching out to the vascular surgeon, she agreed to meet with me. My appointment with her gave me hope again. She told me she would figure it out no matter what. She scheduled an MRI/MRA with plantar flexion and said after that we would do an catheter angiogram to check for PAES. Popliteal-artery-entrapment-syndrome-paes is where your nerve becomes entrapped in the back of your leg. It is very rare. I had to search myself to even come up with that possible diagnosis.

About a week later, I had the testing done. I was in excruciating pain during the 3 hrs of testing. I was told , I’d hear back in less then 4 days. 5 days later, I called and a nurse told me the results were negative. She then called back the next day and said she was wrong and they were still reviewing the results. Another week went by and I finally heard back from the dr. She stated you do not have a vascular issue. Go back to your primary care. I asked about angiogram and she said there is nothing vascular wrong with me. Talk about blowing me off and ripping my hopes apart. I then decided to call another hospital.

In the beginning of May 2015, I met with the new vascular surgeon. Upon exam, he stated that he believed I still had chronic compartment syndrome. I was astonished at this. He said 11% of people can still have it after surgery and need to have the fascia completely removed. Due to my extremely high pressures the first time, he believed this was definitely a possibility. If this is the case, the surgery is much worse the second time around and then there is a 30% chance it doesn’t work. He also said there could be more than one problem. I can not explain the relief that this surgeon believed me.

2 years of an indescribable pain that has taken over my life. I have an appointment this Monday, June 15th to have my pressures taken again. I’m praying for answers. I also have an appointment on the 30th to have my upper back injected (I also have thoracic disc degenerative disease and thoracic spondylosis without myelopathy) by my pain management dr. He is also going to check to see if I have CRPS as well.

Complex regional pain syndrome (CRPS) is a chronic pain condition most often affecting one of the limbs (arms, legs, hands, or feet), usually after an injury or trauma to that limb. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. The central nervous system is composed of the brain and spinal cord, and the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body.

CRPS is characterized by prolonged or excessive pain and mild or dramatic changes in skin color, temperature, and/or swelling in the affected area. It is an extremely painful condition which is considered number 1 of the top 10 most painful conditions. I have nerve damage from the leg surgery and my right leg will literally feel like someone is stabbing it with a hot poker.

I’m afraid to say I’m hopeful again because I’ve lost hope so many times. I keep my life and pain well hidden from most who aren’t around me from day to day. I’m still battling for my SSDI but am making progress. On a daily basis, I can’t fall asleep until around 3am. My sleep is not good sleep. My leg pain is often so bad that I’ll have disturbing dreams where something has happened to my legs such as they catch on fire and etc.

I go see Ernie around noon and can not stand or walk longer then 10 minutes without having to sit. Sitting is also painful so there is little relief. Around 4pm everyday, the pain is so bad that I have to take a 3-4 hr nap with my legs elevated. I then head back to the barn to see Ernie again. He’s my mental therapy. He’s so used to my disability that when my leg gave out last week, he actually moved not to step on me and braced to catch me with his shoulder.

At 32 years old, it has been very difficult to adjust. I look normal on the outside and don’t have a diagnosis such as cancer that catches people’s attention. The stress of no income is unbelievable on top of the physical pain. I dread going to bed every night because my stairs are so painful to climb. You begin to feel like people forget you and have no clue what you are going through because you “look normal”. I feel people looking at me when I pull into the handicapped space. They don’t need to say anything. Their expressions say it all.

My life is forever changed. I often feel that it’s such a waste of a life. I’m so incredibly blessed with my family and loved ones who remind me daily that just because I’m disabled doesn’t make me worth any less. I can not put into words the love I have for them and how I will be forever grateful.

My parents have taken care of me after every surgery. I feel like my Mom and best friends get the most of the burden when I tell them my pain level from day to day because there are so many I don’t share it with.

I’m writing this to make others aware of my story. I want to remind everyone to always be kind to each other. You have no clue what struggles others are facing. Your kind hello that takes 1 second to say could be what makes someone like myself feel like you care. I will never give up even though there are many days I need to remind myself not to.

You are not alone