Pfizer Frustrations, Pain on the brain

Waking up was excruciatingly painful today. Pain, weakness, brain confusion, in between right and left handed. Every single move I make has to be calculated into how much energy I have to spend on the day. I have had to slow down even further than my normal slow, yesterday and today. Feels like Gravity quadrupled overnight.

Psychiatrist appointment tomorrow. Then going back to my moms for the rest of the day, she wants a girls day. I wish I had more energy! 

I spent most of my morning trying to contact Pfizer (the drug company who manufacturers and provides Lyrica to me for free)

My primary care doctor snow wants me to take it 3 times a day instead of twice, and wrote a prescription for it. I faxed the prescription to Pfizer last week but haven't heard anything from them so I gave them a call today. Again, it was One and a half hours on hold before I could talk to a human being.

I found out some vital information I do indeed have to call in to refill it every month. If my doctor wants to change the dosage on Lyrica it would be a five Day to a six week wait while they look into changing the dosage. This kind of a wait could leave me with no Lyrica for a period of time which I do not want because the side effects of withdrawal are awful. Also the doctor himself must fax any new changes directly to Pfizer, it's like pulling teeth to get my primary care office to fax anything. Ugh.... 

Messy house, Greasy hair and Pain.

Waiting for my morning meds to kick in.

I slept late today.. withdrawals from Prednisone are still in full force. I have noticed more fatigue within the past few days. It is a fight to keep my eyes open. Days have blurred into each other, time has no relevance. It is hard to stay focused when pain keeps wriggling itself back into your mind.

Its sometimes hard to keep personal life thoughts out of this MS blog. But honestly our thoughts, feelings, life going ons do directly affect how MS reacts. I feel like sometimes I have very cut and dry posts, and sometimes they are full of feelings.

James has been working 6 am to 6 pm seven days a week lately. He does not get home until around 7:30 and he is snoring by 8:30. I have not bothered him with things that need done around the house, he is working so hard. But this leaves for a very very messy house. I have been unable to do hardly anything lately.. but at least I know why I am so weak, in pain, and fatigued to the point of needing naps. And I also know that withdrawals are temporary, but it is necessary to get off prednisone.

My snailery is suffering some, but It is physically demanding to keep it up. Even as low maintenance as it is, it is too much right now. 

This may sound icky but I have not washed my hair in a week and a half because of the pain it causes my arms to do it. It is work enough just to get in the shower. Now I just sound like a complainasaurusrex.

I do not want MS or any of my other health issues to define me. I think I am going to go longer than 10 days before next step down of prednisone. It is too hard on my body, and I need to give myself time to build up my adrenal glands. 

I am very chatty, I can tell Percocet is trying to work! 

PAIN!

I wish I could take a USB cord and just plug it into my head and my thoughts would come out in words.

PAIN! Pain has been so bad lately, on Friday I stepped down five more milligrams of prednisone so now I'm down to 15 mg every day. Not just arm and leg pain this is body pain everything every little part of me hurts.

Pain is a constant, I can't get rid of it or lessen it enough to not completely take over. 

I have had to take 2 Percocets everyday and even with the help of opioids I cannot shake it. Medical Marijuana helps some, but with pain as strong as this it is hard to make a dent. Edibles seem to help more, they are so expensive here in Nevada but I am to the point where I don't care about the price of less pain.

Why am I having so much pain? 7 months on prednisone. Just now taking that away from my body. Body is NOT happy.

I'm smart and pay attention to my body. For the most part I am fairly accurate with my assumptions. I did post on my awesome MS Groups on Facebook regarding the pain I am experiencing due to stepping down from pred. Asking if it is normal to feel THIS much pain. I do realize that prednisones is likely suppressing pain and inflammation which is the reason why I was on it in the first place after a bad MS flare. 

I have gotten some feedback from my fellow multiple sclerosis peeps that was useful to me. Most people with multiple sclerosis have not taken it nearly as long as I have seven months is a long time on prednisone and it can wreak have it on your body. I have gained almost 40 pounds which is awful but it is the truth and due to prednisone.

Consensus says:

- It will get worse before it gets better

- Pain is part of withdrawals

- Lots of heating blankets

- Occupy your mind

- Keep stress AWAY

- Eat well, meats fruits veggies

- The cortisol thing (will research)

I am taking adrenal support which seems to be very important when you were coming down from prednisones I also was given some information about taking cortisol when you get down to about 5 mg of prednisone, which I had never heard of but I will research it and if it seems like something that will help me I will talk to my doctor about it.

From people who have come off of prednisones even if they've been on it a month or two they say it's like being run over by A semi truck. Hormones go crazy meaning moods are absolutely wacko, hot flashes come out of nowhere, the "adrenaline" flashes are really bad. I can best describe it as having the feeling of someone scaring you really badly and then having the feeling of being really angry that you have been scared so badly out of nowhere, and then having the feeling of "haha" you got me. All of these feelings happen within about 20 seconds and then repeat itself over and over and over again. It is extremely exhausting to have those emotions. I can only guess since prednisones is so tightly linked with your adrenal gland and hormones that I am having adrenal hormone freak outs.

Also! Having your adrenal gland go through so many emotions ups and downs it triggers my mind to thinking that I have low blood sugar and I need to eat something chocolate very quickly. Imagine having PMS times 20. Your body is absolutely demanding something sugary, I have never had my body feel this way prior to all this MS crap. 

I want to note that I did order Turmeric curcumin with black pepper per my primary care doctor suggestion. Turmeric and curcumin our best absorbed into your system with black pepper and coconut oil.

Bad week, Falls Pred. And Hormones outta Whack

I realize I haven't updated in a little over a week!

I wish I could say that I have been so busy that I have had no time to put how I'm feeling into words.  But that is a lie. Honestly, I have had so many different feelings that every time I start to write how I'm feeling I can't seem to describe it correctly and I scrap it. I should stop doing that, nothing has to be perfect and I doubt anybody is reading this blog other than myself.

I am writing today because my pain is so bad.  

Usually when I am having a really bad time, that is what indicates my brain to want to document it. I should get in the habit of just summarizing my day at the end of every day.

This past week has been bad. I have gotten pretty good at paying attention to my body, and which pills or lack thereof do what.

Main current issues:

- Hives creeping up my throat (due to pred. Step down) I have benedryl.

- Arm and leg pain

- Depression

- Extremely weak all over

- In between right and left handed

- Limbs giving out, lots of falls 🙁

- Cannot get my words out right

- Hormones out of whack. Crying inappropriately.

- EXTREMELY overwhelmed by anything outside my own house. I push myself but usually regret it. Embarrassing and I let myself down. Circles back to depression.

1) I am on my period and that makes all MS symptoms worse. *note* (Period was way late started on January 18th instead of January 1st)

2) I am stepping down from Prednisone. Stepped down on January 10th and January 20th. I am currently at 15 mg per day. Less Prednisone means more pain coming back and more emotional episodes. Only Time will tell how much the pain will come back when I'm off prednisones completely. Hormones have a lot to do with pred.

3) The weather has been very wet and I think it's messing with the pain level of my arms and legs.

I am thankful that I now have a pain pill prescription of my own. (Percocet) I was trying to hold out and only take them when I am in crying pain, but honestly by that point the pain is SO bad that waiting 45 mins. for it to take effect is excruciating and takes up precious energy. So.... I am listening to my mothers advice and taking a pain pill in with my morning medication pile.

Problems with Pfizer

I just want to note that During our visit with Dr. snow he prescribed more Lyrica and gave me the prescription. I have called Pfizer the company who manufactures Lyrica and gives it to me for free to try to figure out how to get my upped dosage to them as in doing to fax it or what. I called on Tuesday the 10th but I called after business hours on accident so I called Wednesday the 11th they said that their office was closed even though it was during business hours I also called Thursday the 12th and they were also close that day and I just called today Thursday Friday the 13th and they're closed again today and will open on Monday. I don't know why they have been closed for three days and the operator who text messages isn't sure because she wasn't in the same state or whatever.

New obgyn, Drugs, Feeling strange

So...

Pain clinic with Dr. Snow went well. Since he is also my primary care doctor he knows what I've been going through. Thankfully it was not a fight to get help, and he prescribed generic Percocet and upped my Lyrica (I will have to figure out how to reiterate that information to Pfizer, the company who supplies my Lyrica for free)

Since I am stepping down from prednisone now, Dr. snow also recommended adrenal support. So I bought some from his office and am taking it. Need to watch for breathing problems coming back while I lower the prednisone as well. 

Tomorrow I am seeing another obgyn. Hopefully he is a decent doctor!

I have felt really weird the past few days, almost too weird to find the words to describe it. In between left and right handed, my limbs do not feel like my own. They want to lift, and I almost feel like my body wanting to float away. Everything aches and feels like it weighs twice as much as it should when I walk. I feel like I have stopped making serotonin suddenly, and am an empty shell who cannot find happiness in anything. I feel as if I have no control over it either.

I hope these awful feelings pass. If I can have a positive mind, I can handle most things. Without it, things feel hopeless. 

Oral Surgery, Pain Clinic

I have not updated in a week!

Thankfully the Nausea and hot flashes stopped once I meticulously went through my meds to make sure that I am taking them all.

Oral Surgery was on the 4th, I now have five teeth less than I did. Taking Vicoden and Amoxycillin from Oral Surgeon. 

Pain clinic is tomorrow at 9:50

Confusion, Severe Nausea

I felt really awful yesterday. 

I was so nauseous and confused and the hot flashes were so are bad. Also I realized that I have not taken mirtazapine in about 4 days at least. (My sleeping pill which also has antidepressant properties) so maybe that is part of this nausea thing. I cannot believe I am forgetting to take important pills. That scares me.

I was in bed all day with my earplugs in because sounds were like knives to my ears. Light made me even more sick. I watched two movies on mute in the dark, Honestly I dont even remember what I watched. I didn't realize it was new years eve. Fell asleep very early, slept for 15 hrs.

Note to self- Today

Was starting to feel nauseated and dizzy and a lot of arm pain. Took pain pill and Nausea and dizziness is a lot better!