My Pain

painandperseverance.wordpress.com

In the middle of the night I woke up with a back spasm. I know that is nothing big for “typical” person, but for a person in chronic pain, being woken up at all is bad. I don’t believe a person in as much pain as I am in can get into a normal sleep cycle at all. So if I get interrupted somewhere in the sleep cycle, then a few things happen:

  1. Excruciating pain that cannot be ignored and sometimes cannot be stopped comes stampeding back. The cramp might go down but then my mind is awake and aware of the full body pain which I try to ignore when I am awake. It is impossible to ignore when you are half asleep and not prepared. (it takes quite a lot of preparation during the day to meditate and ignore the pain.)
  2. I wake up my husband who also doesn’t get enough sleep because I am whimpering in my sleep or reaching for him constantly. He has to be ready to get up and get me a pill, an ice pack, or whatever is necessary to help me
  3. I might not go back to sleep-

If #3 happens, that is the worst. If I don’t get enough sleep, which some days might be 14 hrs, as I have chronic fatigue as well, I cannot function at all. By function I mean sit up, walk, do anything on the computer. It takes a lot of energy to ignore pain and keep pain under control.

Many of my friends and family don’t know what I go through so I thought I would be specific.

flat,550x550,075,f

First I want to describe what my disability is and how I acquired it. I have arachnoiditis. I also have hashimoto’s thyroiditis and fibromyalgia, Degenerative Disc Disease, SI Joint Dysfunction, and Connective Tissue Disorder among other diagnoses’; but the AA (Adhesive arachnoiditis) is my number 1 problem. I got it from getting steroid injections into my back. I was lied to by a “pain specialist” and was told I would not be given pain meds unless I got the injections. Yes, I was bribed and from what I read on many of the facebook groups, it is a common occurrence. Little did I know that the injections of steroids into the spine is against FDA regulations even now in 2016 (I had mine done in 2011). Also, you are only supposed to have 3 a year. I had 12 in 10 months. All of mine were done with twilight anesthesia. Every time I got an injection, I hurt worse. Plus I would get fevers, and I would feel lightning bolts going down my legs, and the feeling of bugs crawling and my left leg started to hurt when it hadn’t hurt before. For me, a person with a legitimate bug phobia, it was a nightmare! Constantly slapping my legs thinking something was crawling on them and then it started to feel like bees stinging me all the time. When I mentioned this to the doctor, he just waved it off and said this was normal. However knowing what I know now, at some point, he had to have punctured my dura and injected steroid into my spinal canal.

Now granted at that time, I didn’t know what a “dura” was.  For those that don’t know, the dura is a thick membrane that is the outermost of the three layers of the meninges that surround the brain and spinal cord. Inside the spinal cord is a pristine environment. It has cerebral spinal fluid (CSF) and nerves that dangle down and rope around called meninges I believe. If a foreign object enters the spinal canal, especially something harsh like a steroid, it causes those nerves to stick together like spaghetti.When that happens, it destroys connections to the legs, the arms, even the brain. It causes havoc with the body. As you may have been taught in school, the brain and spinal cord run everything in your body. It is the central nervous system of the body. Central nervous system, central nerves, meaning it controls all the nerves of the entire body. If the nerves become compromised, it wreaks havoc on your entire body. Click here to read about Arachnoiditis on WebMd

So in 2012, after he gave me all the blocks and injections he could and I was hurting worse, he decided to get another MRI done because it had been a year since the last one (and he was stumped, nothing was helping me). A year of him telling me it must be in my head. A year of excruciating pain, but mind you, I was still working from home as a support engineer and software tester. After the MRI, I never heard from my doctor again. Instead, I got a call from a surgeon’s office asking to make an appointment. Apparently they found something on the MRI, that had been there all along. Imagine that I could have skipped having all those injections had someone just known how to do his job right! You see, whoever read the first MRI, a year prior to all those injections, missed that I had a grade 4 tear in my L4/L5 disc!

Imagine your disc like a Jelly filled doughnut and when you squeeze the doughnut, the jelly starts to come out. Well depending on the size of the hole, more or less jelly might come out right? Same with a disc. In your back, in between vertebrae, are your discs which are filled with a gelatinous fluid. If there is a pinhole size hole, that is a level 1 tear. The levels only go out to 5. Mine was a 4. Most of the fluid in my disc was out, and since it has acid in the fluid, it burns the surrounding nerves and tissue. This is why my pain was a burning pain.

WELL moving on, surgery on your spine isn’t cut and dry like it is for say, an appendix. Don’t let any doctor tell you any different. They can’t guarantee the pain will go away or if they are even operating on the pain generator! So for 2012 I literally went insane and ended up in a mental hospital for a week because I was in a lot of pain, I was still working, my husband got laid off, and I was afraid to die and leave my kids. I had a lot of anxiety. All that year I contemplated surgery and googled and joined every Facebook group, trying to learn everything I could but I still didn’t know about arachnoiditis.

However,by getting therapy I remembered and found God again, and by doing that, I was no longer afraid of dying because I knew he would take care of everyone. By then it was 2013 and I had a second opinion from another neurosurgeon who only wanted to do one level and not two (I had a discogram, the most painful procedure I’ve ever had next to the surgery which I had no pain relief for for 3 days). The discogram is a diagnostic procedure that helps tell the doctor which disc is causing pain. I screamed when he injected saline into L4/L5 and S1 but it was the same stupid doc that had given me the injections so he wrote he thought only L4/L5 was the bad one. Here I am in 2016 with S1 herniated. UGH!

The short of it is, the surgery only made my arachnoiditis worse and the surgeon did something wrong because I woke up with both legs numb/paralyzed from the thighs down. Eventually when “feeling” came back months later (I walked with a walker for 3 months and dragged both legs), it was bug crawling, water trickling, lightning bolt electricity coming up and down both legs and my SI joints feeling. When I saw my surgeon for the 3 month follow up again he tried to dissuade me from asking the questions about why my legs were still having weird feelings.

Now how I live. I am bedridden 90% of the time. I can sit in a comfortable recliner, if I have icepacks, for about 2 hrs. That is on a good day. So all day I am in bed. If I try to walk without a cane or a walker, I have excruciating pain running down my pelvis, around to my SI joints, and into both legs. I interchange 6-8 ice packs throughout the day with the help of my adult son, who is autistic, but a great helper, and my husband when he comes home from work. I cannot drive, cook, or clean. I have a shower chair that I use with a shower head holder that allows me to take showers by myself but it is so painful, I only shower once a week if that. The rest of the time i use wipes or wash clothes.

This is my existence. The ONLY time I get to “get out” is when I am going to the doctors or once in a while, my husband takes me to a movie at the local theater which happens to have electric reclining seats. It’s the only theater I can go to because of the comfortable seats. We put my power chair on the electric lift on the back of the car (which cost us $1500) and when I get to the theater, I ride it into the theater room and then transfer to the reclining chairs. I do this because the cushion on my power chair is not soft enough to be comfortable and due to the nerve damage in my feet and legs, there are things poking me that make it uncomfortable to ride in for very long. Don’t get me wrong though, when I decided to get it, it became the best decision since becoming disabled. It allows me some independence and less pain then if i were to use the walker.

First let me describe the nerve damage that I incurred from having a spinal fusion. My legs from the knees down feel like they are on fire 24/7. More so, they feel like they are on fire, then the fire is put out and my skin is dripping/sloughing off, then someone comes along and uses a electric sander on them. That is how they feel. My feet (oh my feet!) feel like I am walking on glass. All day long there is an ice pick is stabbing me in between the toes. The top of my feet have the same burning feeling, but add a prickling, ant bite feeling to it. That is how my legs and feet feel all the time with no relief. (This is WITH having pain cream and medication)

 

lower-back-pain1Then there is my back.  The pain only got worse after the surgery. The pain is a “burning from within” feeling. If you can picture a nerve with a Bunsen burner underneath it, that is how I picture it lol! This nerve looks like a pitch fork with a handle but with 2 tines, one on the left, and one on the right. The Bunsen burner is right in between the two, heating up each side. Now picture that the two tines are nerves that go down through my sacrum and down around my SI joints (the sit bones) and the tailbone. The burning is always there. Another way you could describe it is…well you know that feeling you get when you are exercising (maybe doing deep lunges) and your thigh muscle and gluteus maximus starts to burn? You know how it gets to the point right before you have to quit because it hurts? That is the burning I feel in my back, butt and tailbone. Only it never ends.

 

Treat-back-pain-with-cross-fiber-friction-massageSometimes, there is the deep ache. Maybe you have had that feeling like when you bend over and go to get back up and your back says No…and it “catches”. It’s a sharp pain at first but then mine just settles in and if I move the wrong way, I am doomed.  If I don’t have that deep ache, I have the burning, and sometimes I have both and if I don’t have that, then I can’t sit because my tailbone sometimes gets sore.

Then there is the fibromyalgia pain. I was diagnosed only 2 months ago as of this writing July 28th 2014. I have learned that there are 18 tender points and I have 11 of them. fibromyalgia-300x264 Basically, I hurt to be touched. If you squeeze me, say on the arm, it feels like you are putting 10 times more pressure than you are. I guess that’s why they call them tender points. It makes it very hard to find clothing that doesn’t “hurt” to wear. It also makes it hard to have a relationship with friends (no hugging!) and with your husband (ahem!).

If you look at the image on the right, my tender points are on my elbows, hips, Sacroiliac joints, inner knees, chest, and shoulders. Once I learned the gluteal area  (numbers 17 and 18) was part of the tender points, I realized I had double trouble since I also have SI joint dysfunction. (<—click the link, lots of good info there)

Finally there is the joint pain. I have an autoimmune disorder called unspecified connective tissue disorder as well as hashimoto’s thyroiditis. It is my body under attack…from itself.  The pain can be described as an achy feeling in all of the joints. First, again, there is swelling around the joint, and swelling causes pressure on the joint, which makes the joint ache. Think of the pain that you have when you stick your hand in ice water, or go outside when it snows without gloves and make a snow ball. At first it is cold, then it burns, and then you have this ache. That is the joint pain I have. Every joint in my body, from my toes, on up to my neck (basically anything you can bend or twist) hurts me. All the time.

I take narcotic pain relievers and pain cream as well as use ice packs throughout the day for my back. I have good days and I have bad days. Us chronic pain people use a number system you might have heard of it. It’s called the “Pain Scale”.

faces

My number is on average, a 5. Very rarely do I go under that. On a bad day I am an 8 or a 9. If I am a 10, I am in the hospital. That has happened only after procedures usually. For example I had a lumbar puncture and myelogram a couple weeks ago that unfortunately left me with a nasty spinal headache. I went to the ER and had to have a blood patch. That was definitely a 10 day.

Well hopefully I have sufficiently described my pain so that if you are reading this,  you have a pretty good idea of what my day is like. Comment below how you would describe your pain. I found it very hard to describe my pain in this article!

Advertisements

What is Arachnoiditis? 

Man I have gotten this question a lot lately or have had to explain it a lot so people understand my condition so I thought what better thing to do but write a blog post about it! What I hope readers get out of this is better understanding of what their condition is (if they have it), or if you care for someone who has it, a better understanding of how painful this condition is. Notice how many times they mention the word pain or painful in the definition (and the Wikipedia page). It doesn’t mention symptoms so I will put a few here.

Of course the main symptom is pain but the kind of pain is a burning pain in your back,legs, and buttocks usually. It is a burning pain because it is caused by inflammation in your back. Other symptoms are electric shocks going down your legs, the feeling of bugs crawling on your legs or bugs biting your legs. You may feel cold water is trickling down your leg. Arachnoiditis can also cause your whole body to hurt because it is stopping your central nervous system from working properly. You may feel hot and sweat a lot when it is cold to everyone else. Ok I think you get the idea. I have not mentioned all the symptoms as they are vast. I will let you read on to what Wiki says and then come back and put a comment and let me know what you think! 

I am going to use a portion of Wikipedia’s definition and then give you a link to their page because I believe what they have to say about it is spot on! Ok so here is the link first.

Wikipedia’s definition of Arachnoiditis

Here is the first paragraph of their definition:

Arachnoiditis is an inflammatory condition of the arachnoid mater or ‘arachnoid’, one of the membranes known as meninges that surround and protect the nerves of the central nervous system, including the brain and spinal cord. The arachnoid can become inflamed because of adverse reactions to chemicals, infection from bacteria or viruses, as the result of direct injury to the spine, chronic compression of spinal nerves, complications from spinal surgery or other invasive spinal procedures, or the accidental intrathecal injection of steroids intended for the epidural space Inflammation can sometimes lead to the formation of scar tissue and adhesion that can make the spinal nerves “stick” together, a condition where such tissue develops in and between the leptomeninges. The condition can be extremely painful, especially when progressing to adhesive arachnoiditis. Another form of the condition is arachnoiditis ossificans, in which the arachnoid becomes ossified, or turns to bone, and is thought to be a late-stage complication of the adhesive form of arachnoiditis.

New CDC Guidelines-an article by Dr. Forest Tennant

Please follow the link below and read a great article from Dr. Tennant. Once again, he makes it clear that the chronic pain patient needs to have a voice. With the new guidelines doctors might be scrambling to hand their patients over to pain specialists. Dr. T advices against it and explains why. 

New CDC guidelines-Dr. Tennant article

Pity party

Ok so I rarely do this but here it is, a pity party. I have been in a flare for about 7 days now and I am hurting so bad that I can’t stand it. Today I woke up and my right leg wouldn’t work and I almost fell to the floor if my yelling hadn’t have woken up my husband and he rescued me. He was trying to get some sleep but I guess that wasn’t going to happen. He has had the flu all week too. 

I’m just so freaking tired of these issues that pop up. Oh and also I keep having reoccurring nightmares of the way the disability judge looked at me when he asked questions to try and confuse me. I’m already confused with my medication and can’t finish sentences and he had a smirk on his face and I can just remember him looking at me like “you don’t look sick”. I SWEAR if one more person says that I am going to ring their necks!! My son with autism doesn’t look disabled but he is!!!! 

When is this world going to stop looking for visible illnesses and realizing that their are invisible illnesses such as Arachnoiditis (in early stages and even in late stages) that no one can detect by just looking at you! The judge said to me, “It seems like it was in the doctors best interest to diagnose you with Arachnoiditis if he said he would not ask for money if you did not have it.” I said to him,” You must have misheard me. I said the doctor said he would tell if I had it or not over the phone for free but if I wanted a report, that he would charge for the report. I believe it is fair to charge for his services your honor.” Then he said “ok but it appears your doctor had a problem with the fact that the doctor you sent your MRI cd’s to and records to did not have a telemedicine license for Texas and therefore should not have been giving you a diagnoses in Texas. “I said “Your honor that is true, my doctor told me and my husband that she did not like the fact that the doctor did give me a diagnoses without having this license however my rebuttal is that most patients with this condition can not barely leave their homes much less fly to florida where he is located, to see him in person. Also, the way this is diagnosed is by a radiologist reading your MRI, having never seen the patient IN PERSON themselves. So why would it make any difference if this doctor saw me in person? This doctor has spent 40 yrs of his life studying this subject and has even writen a book about the subject so I feel he is highly skilled to give me a diagnoses, telemedicine license or not!” 

Ugh I hope I didn’t talk myself out of my disability. It just makes me mad. I wonder if I should try and see this other specialist in California. I know it will just about kill me to travel but if I can see him in person it will help my case plus he’s the best and you have heard me talk about him, Dr. Forest Tenant! If I can I will update you all! 

Also, since my doctor filed a report through the Texas medical Board on the other doctor who gave me my diagnosis of Arachnoiditis, I have not heard from his clinic. My doctor left her clinic and is at a new clinic (not related to this) but I do wonder why the other doctor didn’t contact me. 

If anyone knows of a doctor in the Dallas/Ft.Worth area that will take Blue Cross Blue Shield HMO and will diagnose Arachnoiditis please let me know. 

Thanks everyone!! Have a pain free day!

Another great article by Dr. Tennant

It’s no coincidence that I have been posting more articles from Dr. Tenant. The man is very respected by his peers and I must say by myself and my support group of Arachnoiditis sufferers. So whenever I get my hands on an article I always try to share it with my loyal followers. This talks about how opioids may not be effective for patients who have had weight loss surgery or surgery on their intestines or who carry the cyp40 gene. Please click the link below and comment about what you think of the article. I know for myself, this made my mouth pop open because I have had weight loss surgery and I have felt like my pain meds were not as effective and it would make sense since I am not getting the same nutrients out of food. This would mean that my medications are not fully working-I take thyroid medication and pain meds? 

It  is very hard to convince my doctor! Please read article below! 

Opioids reduced effectiveness when taken orally in some patients

Opioid Induced Constipation (OIC)

I know, I know, who wants to talk about constipation? It’s not something people like to talk about but let’s face it, those of us that take opioids for our chronic pain usually have dealt with it at some point or you may be dealing with it right now.
Studies have shown that people have actually stopped taking their pain meds because the constipation was so bad. Severe OIC can land you in the hospital with a blockage. So here is what the experts tell us:

  1. Drink plenty of water. Ok that’s a no brainer. The more water in your bowels, the easier things “flow”.
  2. Before you head for the stool softener, try fiber. One of my favorite brands in Benefiber. You can put it in your drinks, sprinkle it on your food. It is tasteless and odorless and it helps things move along.
  3. Speaking of drinks, Coffee causes constipation because it draws liquid out of your stool. So unfortunately if you are a coffee drinker you will have to give it up if you are having constipation problems. Again, the pro’s out weigh the cons (having a bowel obstruction).
  4. Did you know that if you have hypothyroidism you are more prone to constipation? This was new to me too but as I was researching for this article I discovered it to be true. Because it is connected to having a slow metabolism, so having a slow gut makes sense. (see reference here)
  5. If the above doesn’t work, then you will have to bring out the big guns. In fact, if you are prone to having bowel obstructions, using fiber is not recommended as it can actually cause an obstruction. In that case you can try one of the following:
    1. Senokot
    2. Milk of Magnesia
    3. Dulcolax
    4. Fleet enema
  6. If all else fails, there are some new meds on the market, one of them being Methylnaltrexone (Relistor)
  7. It also helps to get on a regular schedule for your bowel movements if possible. Never hold in your BM because you are out in public. I know that no one likes going #2 in a public restroom but the alternative of getting your stomach opened up to remove an obstruction is well, a lot less appealing.
  8. These days people are big on eating protein with diets such as Atkins, but eating a lot of meat and protein without adding fiber can cause a blockage. You want to make sure you are adding vegetables and fruits to your diet. Yes, that is what they mean by a “balanced diet”. I am bad at this one. I tend to eat a lot of meat and cheese since I was pretty much raised on the Atkins diet. Since I have become disabled, I am at the mercy of my husband because he is the cook now and he hates vegetables. So I really have to remind him to add vegetables for me. He will also buy me ruit i I remind him.
  9. Do not just stop taking your pain meds. This can lead to withdrawals and even death depending on what meds you are on. Stopping pain meds abruptly is never the way to go. Make sure you work with your doctor if you want to wean off your meds.
  10. Exercise. I know what you are thinking. “Tracy, how can I exercise if It hurts to move?”. Well you can’t. So do the best you can. I am well aware of the problem myself. The only exercise I get is in the pool and I am only able to get to a pool in the summer season where I live. however, even stretching helps and a lot of us forget about that. If you are bed bound like me, there are plenty of stretches you can do for legs and arms and your abs. Just google them!

For more information please click here http://www.pharmacytimes.com/publications/issue/2009/september2009/counselingconstipation-0909

It’s been a while

I know it’s been a  while. I have had a lot of family things happening. Some good, some not so good. Yes, it effected my pain. After all if you are a chronic pain sufferer you know that emotions do play a part in your pain levels. The less stress you have, the less your pain levels are. So for several months now I have been at my peak for pain. I had my mother come stay with us for a month. I have always told others that it is never good to have family stay with you longer than a week and I still believe that to be true. Anything longer than a week and people are no longer on their best behavior.

So let’s talk about me some more so I can remind my followers what issues I have. I found out I had arachnoiditis. It means the nerves inside my spinal canal are stuck together which causes all kinds of horrible sensations like water trickling down my legs, ants crawling, and electric jolts going up and down. I also have fibromyalgia which makes my joints (yes my joints) hurt as well as tender areas. I have something called connective tissue disorder which is just a funny way of saying your joints look fine on xray so it must be  the connective tissue that connects to those joints that is hurting you. I also have degenerative disc disease, spinal stinosis, and now (pause for this) I have a torn PCL in my left knee!!!

YES I SAID I HAVE A TORN PCL IN MY LEFT KNEE!!!!

Now you are going to ask, “Tracy, how did you do that? You don’t run. You barely walk. What did you do?” Well this is what happened. Back at the end of June I got a power wheelchair. I also bought a ramp so I could get in and out of my house through the front door. However there was a problem. My front door has a screen. So someone has to either be holding the screen for me or has to prop it open or I have to open it but I can’t because the concrete step is right there where the ramp is and I have to go pretty fast to get up the ramp. So in this scenario I had my son holding the screen door. This was only the second time I had “performed” this feat. I get ready by cracking my knuckles on my right hand, the hand that holds the joystick. I tuck my elbows in and I go. I lean forward getting ready to hit the ramp. I hit it dead straight which is why I am confused as to why the chair starts to go towards the left. I clear the ramp and I am heading for the threshold and I couldn’t stop and I already knew I was NOT going to clear the door. I smacked my knee right into the door jam. I then hollered and cussed like a sailor and blamed my son (which I apologized later for) because somehow his presence there caused the problem. Yeah the old blame it on the kid routine.

So that is how I got a torn PCL and I have to go see the doctor to see what they want to do with me. So never ask God what else can go wrong because something else can always go wrong!

The 5 Biggest Struggles of a Spoonie

Just thought this was worth sharing..

5 Biggest Struggles of a Spoonie

  1. Learning to trust people, to either rely on when you really need help, or to tell people the complete down and dirty truth about your life without fear (or just not wanting to tolerate) being judged. This is something we are constantly weighing out. We would rather suffer alone than be judged, ridiculed, teased, or rejected when we actually finally pull ourselves to ask for a favor. We can’t even trust our own bodies, who can blame us?
  2. Losing our independence. and understandably so, as a human being this is one of the most confusing and traumatizing things to experience. “Able-bodied” people don’t have to think twice about standing, walking, taking a shower, breathing, hell just existing takes so much effort that no one will ever fully understand unless you go through it yourself. And none of us would wish that on anyone. (Unless of course you tell us we’re faking it, suck it up, etc then maaayybbbeee you can see what it’s like for a bit) We realize it’s very hard to understand, we all go through phases of feeling crazy, but so would you. Your body doesn’t work right anymore? You look like a healthy 25 year old, but you feel like a dying cancer patient closer to the age of 80? But that’s a 55 year difference you say? Yep, and we’ll live that entire time suffering this way. But hey “at least you don’t have cancer”.
  3. Ignorant, uncaring, lazy doctors. Generally healthy people have more trust in their doctors, they seem to be very knowledgeable when you have an infection, a cold, minor things. They can get you up and running in no time. They should be able to fix pretty much everything right? *Do you hear that? That’s the sound of spoonies everywhere laughing uncontrollably…* I remember being so shocked that I had all of these crazy symptoms that just kept getting worse, and the doctors pretty much telling me “Welp! Sorry but I have no clue what’s wrong with you. And I don’t feel comfortable prescribing anything that can give you relief so you can actually function and take care of yourself, but instead, let’s try something that will take weeks to work, if it even does at all. Oh, and I know you said you were in excruciating pain, but you need to suck it up and exercise. Try some yoga! And lastly, make sure you make follow up appointments every few weeks to pay for me to tell you that nothing works and to do more yoga. The nurse will show you out. Next!” (If you find a good doctor, never let them go!)
  4. Guilt, guilt and more guilt. Did we somehow do this to ourselves? Did we eat at mcdonalds one too many times, drank one too many Carmel Macchiatos and now our bodies are forever pissed at us and seeking revenge? Yes we know we bailed on our plans from last week, I’ve been beating myself up about it ever since. (Yes honey, mommy is sick all the time and I’m sorry I can’t get up and play tag with you but I will watch you play with your brother!) The guilt of not being able to do all the things “everyone else” can do can be just as debilitating as the pain. We don’t have much control over lots of things. But do we feel bad about it? You bet your ass we do.
  5. Being The Flakey Friend. We all want to go out and have a good time like every one else. We want to be able to actually spend quality time with friends and family, maybe host a barbecue, be the friend that throws the surprise party. But we’re trapped in a body that’s constantly battling us. And just to get up and take a shower is quite the feat some days. But for some reason, those days seem to always be when we are invited out to social function. And as much as we don’t want to, we have to cancel for the third time in a row. The anxiety from that is enough to send us into a flare on its own. So please try to be understanding. And please don’t stop inviting us. One of these days it will land on a good pain day.

-Anonymous fibro sufferer

Blah! Bad pain day! I’ve got the bad pain day blues!!

I don’t know if it is the crazy weather here in Texas or what but my back and muscles are killing me! First of all, I always have pain. It might be low on the pain scale but it is always there. If I don’t take my long acting pain pills, I would not be able to move (and some days, I still can’t!). I know there is a big controversy going on about giving people their pain pills and my stance is this: It is not MY fault that drug addicts are misusing drugs or lying to doctors or pharmacists so why should *I* have to suffer for their mistake? We have enough technology and ways of figuring out if a person has filled too early that all they need to do is add another step and record if the person TRIED to fill too early, or tried to get more or whatever the case might be. Some states are already doing this! Ok I will get off my rant now (but more to come in the next article!!)

So today I woke up and I couldn’t do the log roll to get out of bed. First of all, I am a…shall we say….plus size woman. If I can’t roll out of bed there is a problem! I can literally be stuck and need my husband to come in and lend a hand *he literally lends his hand so I can grab it. Picture him still in bed and throwing up his arm while he is still half asleep haha!) I thought…”Hmmm…ok, we are in for a high pain day!” and then I struggled to roll and grab my bed rail (I bought a bed rail from Amazon before my surgery in 2013 and it has been a godsend ever since!) and I pushed myself up so I was sitting with my feet dangling. So I sat there and rubbed my eyes for a minute. I said a little prayer (I always try to remember to do this before I start my day) and as I put one foot down with the other to soon follow, my knee gave out and I began to fall.

Again, picture me, a plus size woman falling matrix style. It wasn’t pretty folks. Luckily I was falling backwards and back on to the bed! I thought “Hmmm ok my knee is being rebellious today! Little whipper snapper!” and I leaned toward my night stand for my basket of “goodies”. You see, most people keep maybe some chap stick or night cream on their night stand. No not me. I have 5 different types of back/muscle cream’s including non scented aspercreme and some prescription compound creams, as well as Biofreeze, and a bunch of other little “goodies”. If you are reading this and nodding your head in agreeance thank you! I am not a nut!

So I go ahead and hit both knees with cream (I call it being logical, don’t you?) and started to get up. The next thing that “snagged” was my left hip and SI joint (the left butt cheek). Don’t you love it when you stand up and you have a shooting pain from your butt all the way to your toes??? Feels like you are getting shocked right in the booty! Not fun getting booty shocked. Not fun at all. So I grab another cream (Go ahead, call it my “booty cream”, I know you want to) and I put cream there. (Of course did the other side, it’s the logical thing to do right?). So once again I stood up gingerly and awaited my next “snag”.

So as I stood I felt the old familiar back pain but something new hit me today! Right smack in between my shoulders! I am hoping it is just a pulled muscle but something tells me I have a new herniated disc up there. When I move my neck from side to side it hurts in the middle of my shoulders so it’s either a T spine (thoracic/chest area) or a C spine (cervical/neck). Let’s just hope it’s a pulled muscle!!

I always have the low back pain. I have dealt with it since 2009 and after multiple procedures and 1 major surgery, I don’t think anything is going to change that. Today it started at a 4 on the pain scale. To remind you, that is “Moderate pain. Interferes with tasks” (see this article for descriptions of pain). 

Now as I sit at 10PM at night my pain has gone up and down and I have stayed in bed most of the day except for now, I am sitting at my laptop. My pain is at a 7 right now. I just wanted to share my day because I know there are others out there that are going through the same thing. I want you to know you are not alone. Comment below if you can understand what I am talking about!

Chronic pain is a horrible thing that we must deal with on a daily basis. Most people don’t understand that we have good days and bad days and days in between. My hope is to teach the non chronic pain group how to talk to the chronic pain group. So try this simple thing. Instead of saying “How are you today?” ask “Is your pain high or low today?”. Especially if you know the person has chronic pain. Or “How are you feeling today?” indicates you understand that sometimes the person has good and bad days. Just saying “How are you today” makes us feel like you should know how we are. We are in pain. We just want people to understand that if we are smiling and laughing doesn’t mean we are having a good day. It means we have gotten pretty good at hiding it.

Please share this blog article and let me know if you liked it!

Tracy

Ambien causes Back Pain!!!

Today I was able to get out all on my own! In fact all this week I have driven a total of 3 times!! Two weeks ago I couldn’t drive myself and was in the bed most of the time due to pain. In fact, I had been steadily getting worse for the last 6 months going from cane, to a walker, then to a wheelchair if I had to walk more than 15 steps.

I was also starting to forget things. First it was little things, like where did I put my glasses. Then it got worse with forgetting when I took my last pain pill. One night I couldn’t sleep and I guess I took another Ambien. I say I guess because I am really not sure if I did or not. You see Ambien makes you have amnesia. About an hour after taking it you might still be talking but you won’t remember any of it the next day. My husband told me many times and we used to joke about “What Tracy said last night”.

Well this night it wasn’t so funny. I don’t remember the next day (Monday) at all. All I remember is I couldn’t sleep Sunday night and it was about 4AM before I went to sleep. My husband said I tried to get up at 8 and was speaking gibberish. He poured me coffee and I spilled it all over because I couldn’t hold anything. My hands would not work. My brain would not work. He said he had to physically put me in bed and that is where I stayed. I woke up Tuesday thinking it was Monday. I remembered bits and pieces of Monday but it was like it was a dream.

It scared the crap out of my husband.

That day he sat me down and told me he wanted me off the pills. I wondered how I would get to sleep but it didn’t matter. I wondered if that was why I was forgetting things and not putting my pills in the pill organizer correctly. I was really worried about accidentally taking an extra extended release opioid. So I told him I would stop taking the Ambien.

That night I couldn’t sleep. I tried everything but still no sleep until 5 AM. (BTW yes I did try an OTC sleeping pill as well as Melatonin and Valerian root.) I knew it was going to take some time for my body to get the Ambien out of my system.

By the third day something cool happened. I woke up, got out of bed and made it to the bathroom before I realized I just did all of that with no pain, no limping, no stiffness. FIRST THING IN THE MORNING!!!??? I thought “Now this is odd” but had not put 2 and 2 together yet. However all that day I was walking in the house without a cane and I was not having to take my break through pain meds until evening and I was actually not taking ALL of my break through pain meds which is an oddity in itself!! That NEVER happens. I am always carefully keeping count of how many I have taken and how many I have left for that day in my pill organizer. By the end of the 5th day I finally put it together. Taking Ambien out was the only thing I had changed.

So how could Ambien cause so much pain? That is a question for the manufacturer. If it is true, then Ambien crippled me for 4 years. 50% of my pain is gone. How do you explain that?

Yes I am still taking pain meds. They are actually working for me so I can do the things I mentioned like driving and shopping. I still can’t over do things. I figured that out yesterday when I had overdone it and had to get back in the bed. So I have my limits but at least I am moving and can clean my house and cook a little! I feel like Ambien took my life away and caused a lot of pain and suffering and I don’t know what to do about it but I just had to share because maybe someone reading this is taking Ambien and has a lot of back pain too. Back pain is listed as a side effect.

Don’t take me wrong, I still have back pain and I have many issues with my back (degenerative disk disease, spinal stenosis, arachnoiditis, facet joint hypertrophy just to name a few) and those things aren’t going away but Ambien was causing MAJOR MAJOR pain that put me in the bed.

I encourage anyone reading this to please talk to your doctor first. Don’t do what I did and go cold turkey off Ambien. Make sure you have something else you can take because sleep is so important. Oh and one more thing that happened from getting off Ambien. Now I sleep without moving. With the Ambien I was moving a lot in my sleep. Weird things like sticking my legs up in the air and my arms and I constantly tossed around. Now I am like a log. Also, I wake up refreshed which hasn’t happened in 4 years!!!

Please let me know by commenting below if you have also experienced this or are going to try it. I would love to have helped just one person to feel better.