Slacker, slacker, slacker

Wow what a slacker indeed! It’s been 2 months since I was here. Feels like yesterday! So I still haven’t found the perfect Doctor. I’m pretty sure that person does not even exist…or at least not on my health insurance!

I’m overwhelmed with all of the comments from you all lately, thank you so much! I started this blog with the hopes of helping just one other person to feel better, or at least to feel not alone in this fight.

I’m taking the savella at 25mg a day, I found this to be the best dose for me, despite what my Dr thinks. I’m pretty sure at this point she has realized that I know far more about Fibromyalgia than she could ever hope to…or want to! 🙂

I haven’t told anyone at my new job about the Fibro yet and honestly don’t intend to, but I have to tell you that when you are 37 years old and it takes you 5 minutes to get up and stretch your muscles enough to get to the bathroom, people begin asking questions lol Yesterday I ran into a wall. Yup….straight into a wall, as if someone had erected it 2 seconds before I walked by it and I didn’t know it existed. It’s been there since I started over a year ago. Talk about embarrassing! I immediately started laughing but when I ‘came to’ so to speak there were 4 people standing there staring at me as if I had passed out and died. hahahahaha! The Office manager even wanted to send me to urgent care to be sure there was nothing wrong with me. Luckily, I passed it off as having a migraine earlier in they day and told her that sometimes my migraine meds make me a little ‘funny.’ I wonder how  many ridiculous accidents I can have before someone demands I get a brain scan!

Oh the joys of fibromyalgia…..they just never end do they?!

On the flip side, walking 1-2 miles 3-4X a week have done WONDERFUL things for my body! On days when I absolutely don’t have the energy, I simply stay home and do some light yoga or play ball with the doggy and rest my achy body. Getting started is the hardest part and making myself leave the house after getting home from work is a chore too but I’m sleeping better and the pain in the hips/thighs is starting to subside so that makes me oh so very happy. I’m sure that there will be another deep, dark muscle that rears it’s ugly, tight head soon and there are plenty of little ones, but you just got to keep pushing forward to make yourself feel better.

I wish you all pain free days and happy thoughts.

Get those vitamin levels checked! It could be worth finding out what you’re low on, the magnesium, B-12 and Melotonin have been a wonderful thing for me!

 

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Back to the drugs

Does that feel like a constant saying to anyone but me? “Back to the drugs”

I stopped the Savella and went to the Dr, completely excited about the S.H.I.N.E protocol I did so much research on and was so excited to start! As usual…I was completely let down by the so called Doctor. “Fibromyalgia is just so hard to treat because everyone is different, I recommend you go back on the Savella and stay with it for awhile longer”

The Savella drug rep had probably recently been by to see her as she pushed the sample triton packet for me to start it up again. I politely declined, through pushing back the tears and left her office.

I just sat in the car and cried. All I wanted was some tests for vitamin levels and a few other things. I didn’t ask for her to heal me. I didn’t ask her to do anything really, check some boxes on a form and sign it. Simple. I could even read the results on my own. This isn’t my first time, lady.

I really just wanted to march back up to her office and say ‘look B*&^H…you don’t have to deal with this crap every day of your life so it’s easy for you to brush me off and push some damn pill on me, being in constant pain sucks!’ If only I had the cajones. hahaha!

So back on the Savella with the dizzy spells and the spinning eyes and the ever present, imaginary earthquakes. On the upside it’s as though I’m on my very own private roller coaster.

I would still recommend FMS sufferers try it, if covered well by insurance and have access to it, especially if you can get the trial dose from your Dr. It supposedly doesn’t affect everyone the same way, imagine that. The pain level is definitely decreased which is always a wonderful thing!

I’d love to hear anyone’s comments or feedback on Savella or the S.H.I.N.E protocol!


Savella update and other ‘news’

I am the world’s worst slacker lately on blogging. Working 40 hours a week, a new puppy and keeping a house in order takes a toll on a normal person, let alone us FMSers.

I couldn’t believe that it was October when I started the Savella, it seems like just a few weeks ago! I’d like to continue on the path of saying that it was my ‘miracle drug’ but as we all know…the reality of it is, there is no such thing.

I weaned myself off the Savella a week or so ago. I could not take the insane dizzy spells, nausea and heart palps any longer.  I was having numerous tender spots popping back up and I felt that the drug may be doing nothing more than what a placebo may do with the ‘brain effect’ so I stopped.

I am juicing 3 times per day, eating almost completely raw and doing what I can for exercise. I have tried this once before and it is so darn hard to stick to that I gave up. Actually, I didn’t do the juicing, but the raw diet I tried. I am enjoying the juicing and luckily found an inexpensive ‘starter’ juicer at Kohls for around $35, we are also lucky to have a farmers market up the street that sells fruits and veggies far cheaper than a regular grocery store. I’m enjoying the juicing and it does seem to help me feel better than eating all the fried, white flour, bad for you foods out there in the world! No real surprise there though.

Here’s the thing though. The tender points on the insides of my knees hurt far more than I EVER remember before the Savella. Did I just get used to them not hurting with the Savella? Maybe… I went for my monthly acupressure massage last night and I honestly thought I was going to jump up off that bed and punch for Steven in the face if he touched the inside of my knees one more time! Unbearable pain. I’ve also noticed other areas that seem to hurt worse than before the Savella, wrists and elbows.

Oh and get this one; last week, I actually PULLED MY HAND! How does one do that you ask? Good question as I have absolutely NO CLUE. I was lounging on the sofa and went to pick up a ball to throw to my baby Lily, my hand went from a flat, resting position to a cupping position on the ball and it felt as though someone had my hand in two vice grips and they were pulling them apart. I literally cried. I cried and cried and cried until the intense ‘charlie horse’ type muscle spasm stopped. For 2 days I could not use that hand. I could not grip anything at all, I could barely move my fingers. I used my tens unit for almost 2 days straight trying to get the muscle to loosen up in there. Astonishing….a pulled hand. That’s one I never thought I’d experience.

I’ve also noticed that my new puppy, who now weighs a whopping 12 pounds cannot even come near me without me saying ‘ouch, ouch, don’t do that, don’t walk on me’ 12 pounds…really?! The little paws cut into my body like knives and the pain seems to last for an eternity in each paw print. ‘This isn’t normal’ is what I constantly find myself thinking. Oh duh, right, I’m NOT normal…..

So here is what I am exploring now:

S.H.I.N.E.  (click here for story)

I would LOVE to hear if any of you have heard of this, tried this, know someone else that has. I’m making an appointment to go see my Dr and taking all of this information to her when I go. Actually, I think I’ll email it to her BEFORE hand in the hopes that she will read it and research it BEFORE I get there. I wonder what the chances of that happening really are?! ha!

I guess I’ve just accepted that my constant looking for the remedy that works best for me is a part of my life. It may be that way for the rest of my life. But in the end I hope it’s worth it. I must say the few months that I started to feel ‘normal’ again were SO SO GOOD! So at least that gives me something to strive for. I believe that there HAS to be something out there that won’t have as many (or more) side effects as what you are trying to treat and though I fell off of the all natural wagon to try Savella, and it was worth it short term, I’m back on the wagon and I will keep trying.

As always, I love to hear what you are trying and what is working/what is not working. I figure someday I’ll have enough information to put together a book. Or at that point, it may be more like a dictionary of Fibro potential cures/supplements/ideas/helps, etc. I’m guessing it’ll be about 600 pages long! hahaha! I’ll be sure to list everyone’s name that contributed…there goes another 600 pages.

I hope you all are feeling well! xo


Savella – day 15

I’m still singing Savella’s praises! Though I did have a bit of trouble on moving up to the 50mg tablets. Dizzy, blurred vision, major chills and sweats in the same 10 minute time frame. I emailed my Dr and she said to stay on the 25mg for awhile and the side effects should diminish soon. She was right!

It’s been 14 days since my last headache! Pretty sure I don’t remember the last time that happened! Much less pain all around. As I said before, it’s not GONE, but I’ll take less any old day!


Savella…please try this at home!

So I switched Doctors AGAIN. Not necessarily because the one I was seeing wasn’t sympathetic to my overwhelming fibro symptoms, but mostly because I simply didn’t like him. I didn’t like the way he spoke to me, I didn’t like his bedside matter. It was the best decision I’ve made since I was diagnosed with this little monster we call fibromyalgia.

I’ve only had it for 4 years, I say only because I’ve read some of the blogs here and on other sites of people who have had it for 20+ years with little to no relief. We all know that 4 days can seem like forever when you deal with it, let alone 4 years so I’m certainly not underplaying the fact that it has made my life hell for those 4 years.

Anyway, on to my point of blogging today. My first appointment with my new Dr was mainly due to the fact that my hips hurt so bad that I could not take it anymore. I had gone back to vicodin which is HORRIBLE for me to take at work, I do wierd things I don’t remember and I don’t seem to add very well while taking it, which is not good in my line of work. I do alot of accounting, so it’s kind of important to know how to add haha!

My hips were so bad to the point that I was afraid to walk more than 10-15 minutes at a time because I knew I’d have to spend 2-3 hours on ice if I did. Ice and I have a serious love/hate relationship. It helps the hip pain but it hurts the rest of me. It’s definitely a lose, lose situation for me.

I chose this Dr because she is a Dr of Osteopathy and I liked that idea. She did a full history and we talked about all of my ongoing issues. The hip pain started about 8 months ago and progressively got worse. I woke up 20+ times in the middle of the night and couldn’t lay on either side. I couldn’t sit more than 20 minutes at a time without excrutiating pain. She decided it was time for hip xrays and got the paperwork all together for me. We discussed my asthma and got that all situated and then it was time for the fibro issues.

Right off the bat she starting listing the drugs and questioning whether or not I had tried them; Cymbalta, Lyrica, Soma, narcotics, etc. Then she asked me if I had tried Savella. I had not. I have read some information on it but honestly after everything I’ve tried I just figured that this one was the same and wouldn’t work either. Until she told me that she had 8 other patients that she treats for fibro and they all swear by it. GIVE IT TO ME! Give it to me right now I said. She got a good kick out of that comment, but I wasn’t kidding. I was ready to swallow the first pill right there in her office. You know what I’m talking about….we will try darn near anything to get SOME relief, ANY relief, even if only for a few hours.

She went over the side effects with me and said she actually had samples that she would be happy to give me to try for 14 days to see if I wanted to proceed with getting the prescription. I came home and took the first pill immediately, then sat down to do some further research on it.  Nausea was the most complained about factor, I can handle a little sick stomach if it will give me pain relief, anyday. Day 3 I definitely experienced that nausea, all afternoon at work, threw up and all. Not good, but I kept my mind open and since I hadn’t had a headache for 2 days which is pretty much unheard of for me, I still could handle the nausea.

Today is day 6 on Savella, I haven’t quite gotten up to the full dosage, you work up to it by increasing mg over the course of 2 weeks. But let me tell you what…..I have not had ONE SINGLE headache. That in itself is enough for me to keep swallowing those little pills twice a day. That’s not all, my hips hurt 75%  less. (I walked 4 1/2 hours yesterday and today I got out of bed like a normal, overweight, out of shape  37 year old would. Usually I rate myself at a 75 year old woman in the morning.) My shoulders, no pain and no tingling. My knees, at the tender points, no more tender points! My ribs……nothing, no pain. I ran into the counter top today (which I do frequently) and it hurt appropriately, not for an hour later and as if I had lit it on fire.

Please, if you have fibro and you aren’t getting relief from anything else, talk to your Dr about this medication. Read up on it. Tell your other fibro friends. I know that it won’t work for all of us as these medications and fibro are never the same in every person, but even if it helps 1 out of 5 of us I’ll be happy! Nobody deserves this, nobody wants to suffer every single day from pain and fog and headaches and everything that comes along with this horrible syndrome.

I said today to my wife, ‘It feels so strange to feel ‘normal’ again’ and I do. I feel normal. I’m sure there will be flares, but if I stay at the rate I’m going they will be fewer and farther between. I’m so so so very happy that I found the Dr who suggested Savella.

 

 


Hips on fire

Ok so I think I may have mentioned this before but as I’m sitting in the drs office waiting very impatiently in the chair that is causing me so much pain that I’m seriously close to tears, I thought I’d ask you all If you hAve the same pain.

The pain started about 6 months ago and has progressively gotten worse. It started just aching in my left hip. Then moved down to my outer thigh now it’s spread to the other side and to the inner thigh And the lower back. I can’t sit. I can’t stand and I definitely cannot lie down, unless it’s flat on my back staring at the ceiling.

I’ve been in this chair for 45 minutes and I’m about to die.

The chiro told me it was a Tensor fasciae latae issue And she gave me stretches that I’ve been doing. Honestly I think the stretches are making it worse.

This is a new Dr for me due to new job insurance change and I’m not exactly looking forward to this as it is. But I’m here. I’ve already paid my copayment, I guess I’ll sit and wait

If you’ve got this pain I’d love to hear what the outcome was!


Long time no blog….

It’s been a long time since I’ve posted anything….working is, well, hard work! haha!

I went back full-time and it’s definitely not all it’s cracked up to be when dealing with FMS on a daily basis! If it could just come for maybe a week per month, I’d be more accepting of the situation. But if we could choose then I suppose we all, honestly, would just choose it to just stay away!

I’ve learned to just deal with the fact that I’ll yawn continuously all day, no matter if I do somehow make it to bed at 7pm! (No that doesn’t happen often, unless I’m lucky enough to pass out on the couch) I’ve learned to deal with stretching before I even attempt to get out of bed or I’ll cry like a baby when I stand up. I’ve learned to wake up 15 minutes earlier than a ‘normal’ person would so that I can do further stretching in the hot shower every morning, then sit and rest for a few minutes from the exhaustion the heat causes. I’ve learned many many things about having to work with FMS. I’ve definitely learned that it’s a pain. But as we all know – almost everything is these days….literally!

I’m not complaining…don’t get me wrong. I CAN still work, though most days I beg to differ that fact. I DO have a roof over my head, food in my belly and clothes on my back. Some people don’t. I’m not complaining, just wishing it were easier.

Thank you to those of you that have stopped by to read my blog. I appreciate that immensely! I look forward to downloading the app on my new iphone so that I can blog from anywhere and keep up with all of your wonderful blogs as well. I miss the knowing there are others out there like me, that have to deal with all that we have to deal with everyday, with our heads held high and pushing forward.