Hi I’m 18 years old and I’ve been in constant pain since the age of 10 and no doctor wants to do anything about it. I’ve been to the hospital over 50 times trying to figure out what’s wrong with me, but the doctors don’t do shit as usual, I’ve been getting constant headaches for the past 6 years that never go away literally, my back is in constant pain. I have a red circle patch in the middle of my back with weird hair growing on it and it aches, I can’t stop thinking cus of the pain so I never really get to relax, I forgot what relaxing felt like, and forgot what happiness felt like and emotions too. I’m aching all over and I have no friends my family treats me like shit and doesn’t take me seriously. I’m honestly at the point where I’m gonna kill myself cus no one gives a shit and I guess I’m just a number after all so fuck you all…………..
I had an epidural neck injection for a herniated disc at C3-4 andC5-6. They brought me into the room to do my injection and one of the nurses mentioned that the women at the front desk weren’t processing patients fast enough and they really needed to rush through the procedures so they could have lunch. Of course laying on the table and hearing this made me very nervous. When they did the injection I felt the most excoriating pain throughout my entire body, my arm shot up and I could not control myself from screaming. My husband brought me home and I was in terrible pain. The entire left side of my body locked up (the right side is where I was having issues before the injection). I spent a month in bed, barely able to walk. I was told I would be ok within 24 hours, but obviously that was not the case. I called the doctor day after day crying and telling them how much pain I was in and they wouldn’t do a thing about. Finally the allowed me to come in and see the doctor, he didn’t even look at my injection site and made a joke saying I was fine and part of the needle wasn’t stuck in my neck so it’s all good. He would not admit to anything going wrong during the procedure and I still have no idea what happened. I am now doing physical therapy, I’ve done one month and have two more to go. The therapy has done nothing at this point and I have been told that I am in so much pain, because my muscles overreacted to the trauma from the injection, which has caused my head and shoulders to be pulled forward from the muscle tightness. I am in pain 24/7 and have no idea what to do. Has anyone ever heard of this happening during an epidural injection?
When I was first diagnosed with chronic daily headaches and migraines, I didn’t understand what it meant. It’s so much more than endless pain. Sometimes, it’s being woken up at four AM by the excruciating drilling pain of a cluster headache, and firmly deciding to be “okay”: mentally, emotionally.
I didn’t know that chronic pain would mean experiencing sometimes-overwhelming disappointment when a treatment didn’t work.
I didn’t know that it meant learning to let myself rest when I needed to.
I didn’t know it meant having to deal with disapproving relatives. Disapproving doctors. Hundreds of tests. Hundreds of different opinions, and very few options. Missing Christmas dinner. Missing the family reunion and birthday parties. Losing close friends, because they cannot understand why I keep canceling plans.
I didn’t know that chronic pain would mean feeling guilty for having pain. Feeling like a heavy burden on my family because of my inability to work, or to even do the dishes. Feeling completely exhausted. Feeling completely overwhelmed with sadness. Feeling so angry at myself for not being able to do more.
I didn’t know about all the different types of headaches I’d experience — horrible, cyclical cluster-headaches, icepick headaches, sinus headaches, the monthly menstrual headaches which can leave me incapacitated for days, nausea-inducing migraines — all on top of my normal, already-painful daily headaches. I didn’t know that sometimes, all of these would happen at once.
I didn’t know that I’d feel so alone.
I didn’t know that thirteen years would pass by, and I’d still have no answers.
I didn’t know that, at twenty-two years old, I’d feel so broken by pain.
When I was in the seventh grade I was winning my division in road races and running state ranked times in cross country. However, when eighth grade XC season came around I started experiencing extreme pain in the calf when I would run or walk strenuously. My school trainer said it was growing pains so I continued to try to run although most days would end in a fall to the group and crying from the severe pain. I didn’t think the pain could get any worse- I was wrong. I was to the point where I couldn’t run at all. I kissed goodbye my state ranked times and my training schedule and fell into a stretch where I was so mad with myself that I didn’t want to do anything. My mom took me to an orthopaedic doctor at the end of season and he said the pain was being caused because my bones were growing faster than my muscles. He sent me to physical therapy. I did PT for a few months while I continued on in basketball season. I could only stay in the game for minutes at a time before I couldn’t feel my leg anymore and had to sit out. I decided to take the summer off from running and thought that a break may help. I returned to the XC team my freshman year. The pain was still there and only getting worse. My basketball coach and a few teammates suggested that I was faking just so I didn’t have to do the running. My mom took me to another orthopedic doctor hoping for a new diagnosis. He said that nothing was wrong and I should do more PT and stretching. Crushed once again, I did what he said. Track season rolled around and I only did the short distance races but still in pain. At the last race of the season, during the 800, I felt a pop in my foot and fell to the side of the track. I was in a great deal of pain and could barely walk. As I sat and iced my foot at the meet, my cross country coach came up to me and informed me that he had been researching my symptoms and found something called Compartment Syndrome. That night, my parents and I researched it and the symptoms matched exactly. We went back to the previous orthopedic doctor the next day. He diagnosed my foot as having a fracture and gave me crutches and a boot. When we asked him about compartment syndrome- he completely turned it down. Just when we thought we’d finally have an answer, we were yet again crushed. However,my mom wanted to get a second opinion. So we went to a new doctor but he didn’t have any appointments open for a few months in advance so we saw his assistant. She immediately suggested compartment syndrome. She had just been to a conference on it and my symptoms matched exactly. She said my case was so obvious that she didn’t even have to do the pressure test- god bless. My mom and I left that appointment crying tears of joy because this long journey of doubts and unanswered questions could finally come to an end. But..it was just the beginning. My first step in my recovery process was to heal the fracture. For three months over the summer I was on crutches then a few more in a boot. By the time it was healed we were a few months into my junior year. My surgery date was finally here. This surgery was so painful and the recovery process seemed like it lasted decades. After months and months on crutches and months of learning how to walk again, I was finally able to start doing activities like biking. I moved up to the elliptical and swimming then finally running. When I ran again, the symptoms returned…only in my other leg. We immediately went back to my doctor and he said, sure enough, that compartment syndrome often occurs in both legs. I was scheduled for surgery in the next 3 weeks. This time I knew what to expect. I religiously took my pain pills and wanted to push myself to walk sooner so hopefully I could run at the end of track season. Two weeks post op I learned how to walk and the day after I boarded a plane down to the Caribbean Island of Saint Maarten. I kept my fresh scars covered with bandages- which left some gnarly tan lines- and by the end of the week there I was able to hike and walk normal. I am a senior in high school now and just recently got cleared to run again but have not yet because of the fear. I am scared that the pain will still be there- whether it be the surgery didn’t work-which is fairly common- or a new pain arose from the surgery.
I still have 4 very large and visible scars along with no feeling in my ankles. I am patiently awaiting the day where I am not scared to do what I love again- just run. I think about giving up running but then remember why I’ve held on for so long. This will never be over for me, and it’ll always be a fight, but it is possible and I’m going to prove to everyone, but more importantly myself, that I will run again- stronger than ever.
I am a mother of three, 14, 5 and 2, who in my previous life was the primary breadwinner for my lovely family of five. I was a tax manager at a large public accounting firm and it was 4/13. I got home from my who knows how long of a workday and at some point sat down in the recliner and kicked back only to feel a foreign pain shooting down my right leg. I said nothing and went to a fitful night’s sleep. Next morning I painfully got ready for work, having dealt with numerous lower back pain flare ups starting with my first pregnancy and labor during which I broke my tailbone (who knew that was a thing?) I was used to working through pain so I pressed on. The drive in was the most excruciating thing, but goodness it was 4/14 and I’m a tax manager so…I closed the door to my office and feigned total busy immersion. I called my husband to bring me a heating pad and ice packs. I almost overdosed on the little packs of ibuprofen the firm put out in baskets for us screen gazers (three at a time). I left the office before lunch and have never been back except to gather my things.
That was 4/14/2015 and I am still in constant pain. The spine docs took one look at my MRI and listened to my symptoms and I was in for a microdiscectomy lickety-split (I mean, you know, it all goes slow as molasses so that’s relative).
I remember those first few weeks after surgery , things felt so rosy, I still felt pain but I could chalk it up to recovery, it would all be better soon. I started my post-surgery rehab just as prescribed with an inspirational therapist paralyzed from the waist down. Every time ended with me hanging in a pool on a noodle because any other effort caused me too much pain to continue. So you know, I am no wuss as far as pain, three natural labors (I’ll spare you further details) can attest to that.
One month after surgery prompted by my continued pain and therapy performance I got another MRI. When I went over it with the PA she said there was scar tissue that was probably causing my pain but that the herniation (L5-S1) had been “successfully” removed.
I have since have three failed epidural steroid injections, I have been under the care of a physiatrist, who really has done nothing but try to give me some awesome cheerleading, he said he has been dealing with a “similar” herniation for 21 years. So I suppose from that I should take what, that I should get off my ass, suck it up, what?
I am on so many medications. I never think they work until I miss a few doses. I know all about alternatives, have tried acupuncture, have a really great golden milk (turmeric) recipe, have bought out Sam’s Club’s supply of epsom salt, have made my own pain cream with solar-infused arnica and cayenne, menthol, MSM. It feels nice but come on, it’s all temporary.
I am in the process of switching GP’s in the hope I can get some revived attention. I had been fortunate to have been receiving disability insurance, but they and SS have recently denied my claims. I have cashed out my meager 401(k) but am still under so much water.
I rarely leave the house (that I can’t afford) except for doctors. Fortunately, or unfortunately, depending on how I am looking at things in that moment, I have always been an introverted hermit. I don’t know if that will be my saving grace or my downfall.
Today I went to lunch at a local restaurant chain. I’ve been there a lot. The people who work there are friendly. I’ve never had any complaints with either the food or service there.
Today was different. I asked for a large cup of water. I even paid for it, because the free cups of water are ridiculously small & as hot and thirsty as I was, I would have been up & down from the table a bunch of times going to ask them for more water.
I have MS & one of the most persistent problems of the disease for me is difficulty going from sitting to standing, or vice versa. It’s difficult for me to change position in any way.
When I asked this cashier for the large cup of water, I told her why. I told her that I have MS, but I spelled it out. I said multiple sclerosis instead of MS. I told her I wanted the large cup of water because I was very thirsty & that I was having a lot of problems with my legs & didn’t want to keep getting up.
The normally friendly cashier turned quickly unfriendly & turned away saying something under her breath about lazy people & their excuses. She also whispered something to a manager & pointed at me.
I didn’t say anything to the cashier. Just ate my food & drank my large cup of water. When I’m faced with conflict, I usually don’t do anything about it, but I was thinking many things.
Now it’s over & I’m wondering many things. Why did I even tell the usually friendly cashier about my MS? Was it because I wanted to educate, even in small doses? Was it because she was always friendly?
I wonder why this woman felt the need to judge me. I am not lazy, & I do not use my health as an excuse. I make it a point to avoid situations where people could possibly think I was using my health as an excuse as often as possible.
Then I realized – it doesn’t matter. The way this cashier acted did nothing but reflect poorly on her. She may have her reasons. Maybe something happened that caused her to act out. Things trigger odd reactions in people sometimes.
For me, this was just a bad customer service experience. I won’t complain. I have been on both sides of the counter.
But, people, don’t judge other people. You don’t ever know what’s going on inside someone. Just be nice. Or don’t be mean. Geez.
I Googled invisible illness. I know what they are. I live with them every day, but I wanted to see what the internet had to say about them. The internet offers up a basic and obvious definition – a chronic health condition with no outward signs of illness.
Well, duh. I know that. My fellow spoonies know that. Even the average non chronic illness sufferer probably knows what an invisible illness is. The average person doesn’t know it like a spoonie knows it.
I will always firmly believe there is no such thing as an invisible illness. Even though the very definition of invisible illness means a chronic condition with no outward signs of illness. I believe that we all just need to take the time to look.
Because of my MS, I have problems with balance. I often stumble and have difficulty going from sitting to standing, and will fall. Is that invisible? No. I have tremors that cause me to drop things. The mess that can cause certainly isn’t invisible. I faint easily, for a variety of reasons. That’s not invisible. My muscle jerks and spasms can be quite noticeable.
I have cognitive difficulties that mostly cause me to seem spaced out randomly, make me forget the words I need, and do things like put my house keys in the freezer. If you know me, those things aren’t invisible either. Take the time to look. It’s so simple.
But you, my healthy friends, co workers and associates, have blinders on. Most of you don’t, or can’t see the truth. Most of you have nothing but good intentions, but you don’t really see me. I don’t blame you, it’s hard to understand things from a perspective so different from your own.
So let’s take the invisible out of invisible illness. Notice me. Notice how I struggle to get up. Notice when I tremble and shake, or look weak. Notice when I seen exceptionally clumsy. These are signs of my so called invisible illness.
Notice me trying my hardest to push through all the pain and all the struggles. Pay attention. Even when you see me happy, it doesn’t mean that my pain isn’t there. It means that I managed to be stronger than the pain.
Invisible illness can be horribly isolating, even when you aren’t alone. It makes me feel invisibile. All I want is to be seen. Visible.