A lot to be Thankful for

Here we are a little over a month later from my last post.  I always have good intentions to blog, but getting on my computer has not been a priority.  Even though there are many holiday things I should or could be doing I've made me the priority.  Many days I've been resting or reading and thought I should update my readers and let them know how I'm doing.  Finally, here I am.

I saw my rheumatologist a week ago Monday.  On that day I had started the medication he recommended just 3 days before. To soon to tell anything yet.  I was shocked to hear him say that patients who have never been on an opioid have a higher percentage rate of it working.  What?  Now you tell me.  I'm always in that low percentage so I didn't like hearing this.  Never the less, I'm thrilled to no longer be taking the pain medication.  I'm at the point that every day that is a "normal" day my pain scale is level all day.  It never decreases, only increases with activity.  I can live with this much better than the highs and lows of the way narcotics effect you.  If this new medication will help my FM pain I will feel really good about the place I'm in right now.

The first Monday of December I saw my therapist and asked her if I could taper off of my antidepressant.  I really expected her to say no.  What I was taking is also good for anxiety so I didn't think she'd go for it.  At the end of our session she told me it was obvious to her that I was still hurting but she saw many differences.  The tone in my voice, the sound of hope, and some smiles.  (Geez, didn't realize I never smiled)  She said, "YES".  Woo hoo another one bites the dust. ( pills ).  I've been off it for 11 days.  So far so good.

I really believe everything I've been trying in the past and taking now was not helping because of the narcotic.  Last week I had a particular day that was tough for me.  That night I had hives by the time I went to bed on my arm on my hip on same side.  The next day I was down most of the day.  Sore muscles, nerve spasms in most of the FM tender points.  The good news is that I seem to be having fewer of these days.  If I'm at home and don't over exert myself with something out of my normal routine I can say I'm doing better.  Again, the day to day pain has been so much more manageable than before.  I know this is it.  This is my life.  I think part of dealing with it better is that I no longer have any idea of what "normal" feels like.  You don't miss what you don't remember.  I have no clue what it would feel like to wake up and feel well.  

I'm still walking as often as I can.  If you suffer from back pain and you can manage to get started it will be so beneficial for you.  If you don't do something to continue to strengthen it, it just gets weaker.  Does that mean it's easy...no chance.  I really do a lot of "I can do it" chanting and I listen to Christian music while I walk.  It has become therapy mentally and physically for me.  I get a natural "high" when I make it to the finish line.  It must be something like that for runners.  It is a big challenge, and you should take it on.  It is so worth the time you put into it.  Stretching after it must, so it adds a little more time.   If your going to do it, do it right so you really do some good.  I feel the best I feel all day for the first hour after my walk.  Web MD has some great stretches for people with lower back pain.  Do's and don'ts.  You have to make sure they are ok for your particular case.  

So what am I up to right now?  I'm recently obsessed with The O'Reilly Factor.  I've learned more about politics since the Michael Brown shooting than I've learned in my adult life.  Not to mention all the other things going on in this INSANE crazy world we live in.  

I'm making a reading list.  All of a sudden there are a lot of new books out I want to read.  Also some new music I'm interested in.  I'm not stressing out about Christmas.  What I get done, I will.  What I don't, I'm really not that concerned about it.  That's unusual for me.  

Going to the movie theater is not big on my list.  To hard to sit through the movie.  I'd love to see the Hobbit (The Battle of the Five Armies) and Unbroken....at the theater.  If I go once a year that's a lot for me so I'm challenging myself.  There are some movies you just need to see on the big screen.  Last night my husband and I watched "When the Game Stands Tall"
It was awesome and I highly recommend it.  It's based on a true story.

What am I excited about.....what else? The Celebrity Apprentice is BACK! Jan 4.  A great cast of celebrities.  The only thing that makes up for the end of DWTS.
Alfonso was my pick from the beginning.  I was so happy for him.  Everyone in the final four was great though.  All deserving.  

Tomorrow will be two weeks on the new medication.  I really want to believe it's helping.  Time will tell.  Oh and one more thing.  I found some research that links hives with FM.  I've been doing a lot of trials of getting off of things to see if that was the cause.  I really believe I've found my answer, which is, they are not going anywhere.  Monday I had to have a biopsy for a spot on my arm and it just so happened that the other arm had several hives out.  I discussed with my dermatologist once more and showed him some pictures so he could see how many more I have at one time these days.  Not to mention the size of them seems to have increased.  He gently told me after this long I can't count on one thing, they are here to stay.  The good news is that studies have found that sometime in your 60's you "outgrow" them.  Such a hilarious term.  I'll be 50 in a few weeks. 10 down 10 to go.  Something to look forward to.

Wishing everyone a very Merry Christmas and a safe and fun New Year.
Theresa

The joy in my heart

Thanksgiving day

A new plan

As I mentioned in my previous post I've made some decisions regarding my medications.  At my last visit with my rheumatologist he discussed a medicine with me that has new studies out to help with FM pain.  He asked me to go home and research and for some time I forgot about it.  When I did look it up I was disappointed in what I found because the drug seemed to be used for patients detoxing from high doses of narcotics.  At first I was kind of upset thinking he had the wrong idea about the amount of pain medication I take.  At one visit I remember him telling me that some time your pain medication can actually cause your pain to elevate if it is blocking another medication your taking.  Then it dawned on me that he said to make sure and research the medication along with FM pain.  Not just the drug name alone.

After researching this way I felt better about what I found and read.  There were several studies and some patient reviews also.  I can tell you I'm shocked at my own self for even trying this after trying 3 different drugs for FM treatment.  Then some years later trying the Lyrica again.  This was the second time I'd heard this information from  Dr. C and he is my favorite doctor of all of them and I don't think he'd recommend the drug if he didn't think I'd get some results from it, even if small.  The draw back is you cannot take it if you are taking a narcotic.  Which means I have to get off of my pain medication before I can even try it.  Just thinking about trying scared me to  death.  Everything I do revolves around my pain medication.  What time I go somewhere, when I try and exercise, when I do any house work.  I could go on and on.

Right about the time I was considering this option it was time for my 3 month check with my PM doctor.  I talked to him about it and he was pretty positive about the medication too.  I started to have a little hope.  We discussed what was involved and how long it would take.  He said if I wanted to do it the best way with the least withdrawals it would take about 2 months.  He said towards the end my pain would definitely increase for a period of time then it would level off.   A lot of patients who have taken a pain medication for a long period of time and get off find that if they make it through getting off they find their pain is not any worse than with it.  

So why would I do this then?  For a long period of time I've hated that I have to take pain medication to get through my day.  I hate the stigma that comes along with it.  I hate how long I've been on it.  I hate the side effects and the harm it's doing to my body long term.

My stimulator allowed me to cut back, but it doesn't work well enough alone.  I can't say "it won't hurt to try" because if you've ever had to come off of a medicine you need to taper off of (not just a narcotic) you know how sick it can make you.  If this other medication works for the FM then maybe, just maybe things will even out.  I'm ok with not being any worse.  Of course if it's Gods will that I get "real" relief then hooray.  If not, I'm thankful to not feel worse for stopping the pain medications.  

Back to our conversation....he asked me when I wanted to try and I told him that I'd like to get through the holidays then get started.   After a few weeks passed and my husband and I talked about it more I decided I was ready to get started.  Why wait?  Maybe I could be done and better by Christmas.  So I made the call last Thursday morning.  I had an attitude going into it because I'm always complaining about the staff at that office.  I really like my PM doctor but it is so hard to deal with his staff.  Once I get to the back and I'm with him it's all good.  I've threatened so many times to go somewhere else but it's just not that easy with my stimulator.  

The nurse called me back about 3 that afternoon.  I told her in detail what I wanted her to discuss with him for me.  I told her if she had any questions it should be in my notes from my last visit because we talked about it.  It was Thursday and he wouldn't be there Friday.  She told me not to expect a call until Monday or Tuesday.  So until Tuesday afternoon I was patient.  After that, I was annoyed.  So typical of this office.  I called Wednesday am and left a message in case they weren't aware it was approaching a week I'd first asked for a return call.  By 3 pm no call.  I called back and talked to the front office.  This lady was certainly honest.  She told me they get a complaint every day regarding this matter.  I asked her to leave my message personally to the doctor.  She also said she would inform the office manager of what happened. 

Today, still no call by 9 this morning.  I decided to reach outside the office for help.   It was a long shot, but I didn't care anymore this an important decision I'd made regarding my health and I felt like my doctor didn't care about ME at all.  I text Mr. R and asked him if he happened to be working with my doctor that day.  He called me an hour later and said he'd been in surgery all morning but not with my doctor.  Mr. R told me he had no problem texting my PM doctors nurse and mention that he was setting up an appointment with me for reprogramming (this was true) and I mentioned the issue going on with them getting back with me.  15 minutes later I received a call from the nurse.  "what can I help you with Ms. Theresa?", she asked me.  Are you really serious?  I left a detailed message with your co-worker (his other nurse) and a detailed message on your machine.  She said the other nurse was working at another office this week and she really didn't know what I needed.  As far as the message I left yesterday she looked in my chart and didn't see any notes about what I left the message about.  I started crying and the next thing I knew my doctor was on the phone with me.  My tears were real, but I'm here to tell you sometimes a few tears goes a long way.  Don't be afraid to cry :-)

I did have to jog his memory and he remembered our discussion.  We talked for about 15 minutes and he reminded me this wouldn't be easy either way I did it.  He said my dose was low enough I could just quit cold turkey but I'd be down and out sick for 2 weeks.  His exact words were "you'll feel like your dying" and I believe him.  Or...we stretch it out slowly over 6 weeks.  Same results but a lower levels each day.  I will be completely off in 2 months.  I'll be dealing with some intense pain he said but it should level off in a month or so to where I was when we started.  As soon as I'm completely off I can start taking the new medication.  I'm really anxious about this entire process.  Who can put there life on hold?

I plan to try and keep you informed on how it's going.  I hope to get through this without to much discomfort so I will feel like getting on my lap top and catching up.  You wouldn't believe the emails I need to check.  In October I have an appointment with Dr. C so I can get some encouragement from him if I need it.  He's going to be glad to hear I've made the choice to at least give the medication a try.  

Wish me well and thanks for listening.  I know some of my readers understand exactly where I am and what my experience will be like.  
Living with HOPE (hold on pain ends)
Theresa

New News

If I pick up where I left off I'd share that I love my new psychologist.  She is a lot different than who I was seeing.  I liked her though, that's very important for someone who will be prescribing you medication that can change your total attitude and nature. 

She had a drug in mind at the end of our session that she thought she'd really like me to try.  UGH...I hate coming off of antidepressants.  It's always so scary.  Not to mention I'd just had this awful experience with the Limbrel that was still slightly present.  She went into discussion of why she was considering this medication.  As I left she wanted me to just take my current medication and she'd call me the next day with her decision.  She wanted to review my genetic testing.  

On Tuesday she called as promised but had something else in mind she wanted me to take.  I have to say I was disappointed at first because I'd done some reading the night before. For the first time I liked what I read and even the patient reviews were good.  Those can really scare you.  D does not like for me to read all of that.  I had to trust her judgement though.  Dr. L's notes mentioned that she was considering me trying this medication and she agreed it seemed to fit my needs based on her notes and genetic testing notes.  The good news was she had the first month in samples for me.  My husband went by and picked it up for me and the journey started.  

OMG !! I shouldn't have read the reviews on this one.  Maybe 1 out of every 10 was positive but 9 negative with a lot of side effects.  The next day I started tapering down on the Viibryd and started the new one.  Two days of 20 then up to 40.  Today was the last day of the Viibryd.  It hasn't been to bad.  Not sure the side effects I'm feeling are from coming off one or starting the new one.  This new one has only been on the market since the fall of 2013 so I'm a little nervous about that.  My new doctor likes that it helps with chronic pain.  Like Savella, Cymbalta, and Lyrica all of which I've tried.  Maybe, just maybe this is the one with the perfect balance.  Pain, depression and anxiety.  Supposed to cover all of this.  What a wonder drug if it does! 

Yesterday was my annual eye exam except it was a little later than annual.  I just can't seem to stay out of a doctor office so there are a couple I scheduled out during the year even though I was due to go at the end of the year.  I have to see the dermatologist next month.  

I've been telling my husband that I had a feeling my prescription for my glasses would change.  Seems every time I go in my eyes are worse.  She said around age 60 they will level out and should stop changing.  Not urgent.  I can wait a few months and just call in when I'm ready.  After my eyes had reached the point they were dilated enough she seemed to spend more time than usual looking and studying.  After she was done she talked to me about Fuchs Dystrophy.  The good news is that I come for my annual exam so we caught it right away.  I was kind of in a fog as she explained about the disease, causes, symptoms and worst case scenario.  

Wow, I sat in my car feeling like every time I go to the doctor they tell me something is wrong.  I think I will stop going.  I know that's not the answer but right now I'm still in the "why me" & "don't I have enough" stage.  I'll be past it soon.  I don't stay there long, but it's something I have to go through.  My way of dealing I guess.  

Fuchs Dystrophy, no matter how you look at it, has no good end.  It's a slowly progressing corneal dystrophy that usually effects both eyes and is more common in women.  It rarely effects vision until people reach their 50's and 60's.  I'm 7 months from knocking down that door!  Symptoms may include:

Blurred vision on awakening that may gradually clear up as the day goes on.
Other types of visual impairment, including distorted vision,  sensitivity to light, difficulty seeing at night and seeing halos around lights.
Eye discomfort..
Painful tiny blisters on the surface of cornea-caused by excess fluid within the cornea.
A cornea that is cloudy or hazy in appearance
Blindness-may occur late in the disorder.

Treatment involves in early stages topical hypertonic saline, the use of a hairdryer to dehydrate the precorneal tear film, and therapeutic soft contact lenses.  Definitive treatment however is surgical in form of corneal transplantation.  

At this point I stopped reading.  I don't want to know or understand anymore right now.  My progressive change in vision is not related to the Fuchs Dystrophy.

Gluten Free is going well.  I want to mention because there has been some talk in the news of GF being unhealthy if you eat too much of the same thing over and over and not getting in enough veggies.

Kind Bars....very good  GF

scrambled egg with veggies, GF shell with salsa

A couple things I discovered that are good.  The Kind bars are tasty.  I try to just have one occasionally.  They are expensive at some places like health food stores but Albertson's carry them.  They regular price is still cheaper than HFS. I recently caught a sale on them for .81 cents.  Thats why you see a box of them!  I never eat breakfast for breakfast.  Honestly I hardly like any breakfast foods.  I do however like scrambled eggs for supper.  I decided one night to jazz them up and put in a GF wrap add a little salsa and it was awesome.  

At least 2-3 nights I've been stuck on jasmine rice with saute bell peppers and onions, grilled chicken and broccoli all tossed together.  Guess what I add for some spice?  Yes your right, some salsa!

Jasmine rice, broccoli, bell pepper and onions 

Thats all I have folks.  I'm processing this new news and really can't wrap myself around anything else.  
Enjoy the rest of your week and I wish you peaceful and painless days.
God Bless,
Theresa

My two week pity party

I changed my mind three times for the title of this post.  I saw some hope and once again feel defeated....

Two weeks ago tomorrow it dawned on me that I was supposed to stop taking any NSAIDS until my scope that was scheduled for that Friday the 30th.  Great, day one tomorrow of a week of hell.  I just didn't know how I was going to deal without my "extra" help.  

Sunday wasn't to bad because I tried not to do anything more than I had to.  The following day was Memorial Day and D had grilled the day before so I didn't even have to cook.  I'd really started to dive into my gluten free change. I had very little left in the house of mine that would be a "no-no".  I was pretty set for the week.  

Tuesday I went to my daughters house as usual to watch the grandkids.  I got through it.  I'm usually pretty beat when I leave but my pain level was pretty up there this day.   Each day seemed harder and harder.  I did everything I could to get through without the ibuprofen and not increase the pain medicine.  More creams, increased stimulation and a lot of praying.  In the end it caused a flare up that was out of control and guess who came to visit...yeah my friends the hives.

Thursday evening came around and I was so relieved it was over.  Try and sleep tonight, take the test tomorrow and get some answers.  I always believe before every appointment or test I'm going to get an answer.  The same answer I've wanted to know for years.  No different news about this text.  Pictures looked the same as last year.  That part is good, but the fact that my symptoms are much worse are not.  He said absolutely no more ibuprofen.  I'm crushed! What about cutting back I asked him?  He said, "well, you could take 1 TID"  I seriously thought he was joking.  I take 4 at a time.  I was thinking more along the lines of taking the 4 once a day instead of twice.

My mind drifts back to the Limbrel that my PM doctor wanted me to try.  I tell the gastroenterologist about it and he agrees it's a great option to try.  So I take my first dose when we get home with my coffee I missed earlier that am. I had another prescription to pick up that day so I discussed how to take the Limbrel with my pharmacist.  I was thinking it was like the ibuprofen and you have to wait 2 hours between it and pain medicine.  She let me know it doesn't work like pain medicine and not to get my hopes up to get relief instantly.  If it  works it will be an overall reduction in pain scale by reducing some of my inflammation.  She said it won't make me feel better, then ware off like the pain medicine.  So when I returned home I was glad to know I didn't have to wait two hours to take my pain medicine.  It was almost lunch time and I was just taking my morning regime of medication. 

It's supposed to work best on an empty stomach so I wanted to do my best to try and take it that way.  By my second dose that night I was so nauseated :/(
Please God, let this be temporary.  One of the side effects but should pass quickly.  Not taking with food will help your body absorb better.  It continued most of the week.  Wearing off a little each day.  Finally by Thursday I was past it almost completely.  Then the bombshell hit...I went to bed that night and shortly after lying down starting feeling as if the bed was spinning.  Ok, this was weird.  What in the world is different.  It continued to get worse and keep me from sleeping.  I took out my pain/medicine journal and started to study.  

I got up Friday morning and when my feet hit the floor I felt so dizzy I went right back down.  It was so weird to me I'd never really experienced dizziness like this.  Both times I tried Lyrica I though I was dizzy but now I'd call that "light headed".  More like a brain fog or brain zaps.  My eyes twitched with that medication also. 

I had a friend coming over to visit and wasn't by any means canceling my plans.  My car was in the shop and I was stuck home anyway so I tried not to let it get me down.  I told myself hey, your not going anywhere today anyhow so couldn't be a better day to happen to you. It will pass and be over.

Speaking of my friend,  One of the things I love about her is she has no problem calling me and saying, "hey are you free this week I want to come visit?".  Perfect day for her to come since I was at home and even though I was feeling pretty weird having her here kept my mind off of the dizziness and my worry of why? It actually lightened a lot for some time but then later in the afternoon right about the time D got home I had to get still and recline in my chair.  I still took my evening dose of the Limbrel and I could tell after that the swaying, spinning and nauseas feelings returned with a vengeance.  Ugh...this can't be happening.  Please tell me it's not the medication.  If it isn't though, what is it? I really need this medicine to help me and to not make me have new problems.  After another rough night Friday night and barley able to get around Saturday am I was really getting down about this.

Who can I call on a Saturday?  Ah..my pharmacist. I love her.  She knows my husband and I both and I can talk to her about most anything.  I let her know what was going on and she recommended I get something over the counter for nausea because that usually helps with dizziness also.  She recommended I try some Bonine until I talk to the doctor on Monday. 

 She said there was a possibility it may not even be the Limbrel.  It may be vertigo she said.  I don't know what would be worse to not be able to use the Limbrel or deal with treating Vertigo?  We talked about how I'd recently started swimming again.  Maybe I had some water in my middle ear she suggested?  Maybe this, maybe that.  Try this and call your doctor Monday.  The most she could do for me.  She's not a doctor after all she reminded me.  She could see the disappointment.  I couldn't hide it. 

I had taken the morning dose and decided on my own to skip the night dose.  At 1am I was finally able to lay my head down and try to sleep.  Even the Bonine was not helping at all.   I'd decided I'd rather start over if I have to because it's the only way I see to know if that's what's causing the trouble.  Sunday morning I was so exhaused from the previous two nights lack of sleep. I pushed my way though a epson soak hoping to detox some of the medication out of my system and I was really adding to the large amount of water I drink.

I wish I could explain how I was feeling.  I tried telling my husband.  He said he understood but I know he didn't.  What's new with me not feeling good?  It's always something.  I am a fighter though.  I was so sick of feeling sick that I wasn't spending another day stuck in my house feeling like I had to hang around the bath room and hold on to the walls.  I got dressed and made myself to to the store.  I think I know how a drunk person feels driving now.  Don't know how I got there but I did and I was ok.  Felt good to get out of the house. 

It wasn't until 5 this evening I seemed to feel better.  Matter of fact I had went out side and realized I was watering and doing ok.  I decided to get in the pool and walk around a few laps.  It went very well surprisingly.  Could this be over?  But what does that mean?  I can't take the Limbrel?  That really stinks.  Guess I will wait to talk to him when he calls instead of making conclusions.  Maybe I can try the lower dose of 250.  I asked my pharmacist if maybe eating with it may be helpful.  She said that is not a side effect that would change from eating with food.  

So I wait...like usual.  On them to see what they say.  I'm expecting to hear it mostly like was the Limbrel causing or why would it have cleared up over the past two days.  If it continues to stay clear guess I know for sure.  Like I said above, I really needed this medicine to work for me but I push myself though a lot with my back already hurting.  I guess if I can't take it just wasn't meant to be.  Worse case i'll take the ibuprofen anyway.  At this point I'm just looking forward to sleeping good tonight and waking up feeling "normal" for me.

Tomorrow morning I have an appointment with my new psychologist.  Third one.  I really like the previous one but she retired to be with her daughter in another state having her first grandchild.  I guess I can't hold that against her. I just hope this therapist and I connect and have the same relationship I did with Dr. L.  I have a lot of questions for her.  None pertaining to any of my issues from this week end.  She doesn't prescribe that medication for me.  I plan to ask her to try and wean off of some of my others if she thinks I am ready. 

Thank God for my stimulator and it working so much better than it used to.  I couldn't tolerate what I do without it.  Some parts of my post may not seem right as far as time lines and days.  I tried multiple times to write but many things were out of the question with the dizziness.  Reading, watching TV, checking email, walking around in the pool.  Very simple things I couldn't do.  It was so frustrating.  Tomorrow is a new day.  If I can't take the medicine I accept that.  I just hope it doesn't come back.  I have no idea what my treatment for inner ear problems or whatever vertigo treatment is.

Struggling to keep up H.O.P.E.
Theresa

Morning Prayer to start your day.

I will this day live a simple, sincere and serene life; repelling promptly every thought of impurity, discontent, anxiety, fear, and discouragement.  I will cultivate health, cheerfulness, happiness, charity and the generosity in giving, carefulness in conversation and diligence in appointed service.  I pledge fidelity to every trust in a childlike faith in God.  I will be faithful in exercise, deep breathing and good posture.  Eat only healthy foods and get sufficient sleep each night. I will make every effort to improve myself physically, mentally, emotionally and spiritually every day of my life.  

What's "Not" Happening

It's been so long I decided best to go back and read my last post.  How long ago was that now?  I've been a slacker...but I have a good excuse ok?  I'm not going to tell you I haven't had time.  We all have the same amount in every day.  I just haven't physically felt like it period!  Here's why.

During the week of my last post I started the move with my rheumatologist to try something for the fibromyalgia pain.  I've been putting if off because I don't like the choices of drugs for FM.   I had reached the desperate, I don't care any more, pain level.  "Give me something, I just want to feel better".  That's what God said through my thoughts when I opened my eyes that morning.  You can't deal with this any more.  So I emailed my doctor and asked him what he thought.  

At first he reminded me we tried it in 2011 and I asked to stop taking because of side effects and you didn't thing it was helping.  His positive side was that it was not "full blown" or a "flare up" at that time.  Now your experiencing the real ugly side of it, it can't hurt to try.  I wrote back and said, Lets go.  Last time one of the two side effects went away after two weeks even though the other hung around.  I'm ready to try anything.  So he recommended I start with a night time dose. 2-3 hours before bed time and 2-3 hours when first up is the worst.  If we can get results with a bed time dose that would be great. If that's not enough we'll make changes.   Sounded good to me so I started Thanksgiving Eve night.  I thought I noticed a small difference the following morning but didn't think possible to notice results that fast.  Night two, Thanksgiving night after traveling to and from D's families home town, even more noticeable.
  

D with his dad and one of his sisters

My family came here the day after Thanksgiving.  I had little to do.  My husband did the cooking.  My daughter brought pie and a dish.  I made a cake.  D's birthday was the day before and my moms the next day.  So I baked a birthday cake.  Not a big deal.  My granddaughter stayed the night before and she even helped.  Being on my feet a lot really effects how I feel also so I kind of jumped the game and took some of the medicine before the all over pain started with a morning dose. That has been the only day I've taken more than bedtime.  That night was my third dose.  Definitely a noticeable difference when getting up in the morning on Saturday.   I can't tell you how pleased I am with the results so far.  

Always ready to pose

My silly grandson

This medication does not effect my back in any way except that one pan level 8 is easier to manage without another pain level 8 present at same time.  I emailed Dr. C back that following Monday morning to him know I really felt like I was getting some good results.  He was thrilled to hear and hoped it continued.   

That week end after Thanksgiving brought something new to deal with though.  Life is never simple is it?  On the Saturday my pointer fingertip felt swollen and underneath side felt very tender.  Every time something touched it it felt tingly and sore.  I mentioned to D and he seemed to think I always have something hurting everywhere.   On Sunday it increased and by night time it was really feeling weird and swollen to point I couldn't bend it.  It kept waking me up during the night throbbing. 

When I went to OT Monday am she checked it out and asked the hand specialist to take a look.  Her opinion was I should get right on the phone and make an appointment with my dermatologist.  She said, "this is not going away.  What are you waiting for to happen?"  So I called.  Fooled around for 2 hours waiting for the appointment.  I had blood work at 8.  Saw my social worker at 8:45.  The OT at 10 and the PT at 11:15 to 12:30.  The PT did some more needling in my elbow and my second session on my back.  She inquired about results from the first but I let her know I'd traveled, had a day of company, and a busy week end.  Not to mention starting a new medicine in the middle of all that.  I didn't want to mislead any information to her.  I let her know in all fairness it wasn't a good week to try and judge on that.  

On to the dermatologist and he decided it was paronychia.  He treated it like staff to be on the safe side.  He said he really felt like that was what it was but without any infection present at this point to tell.  A medium dose antibiotic and recommended warm soaks or compresses which ever I preferred.  And when will this throbbing stop I asked him?  It kept me awake much of the night.  The soaks should help and after 2-3 of antibiotics in system I should feel much better.  I know I'm a pessimist, but I drove away knowing it wasn't going to be that simple based on how much it hurt.  Monday night it was worse.  Just couldn't sleep.  I soaked it on and off during night.  Tried propping it up.  Tried the TV to take my mind off of it.  Nothing worked.  At 5:30 am I gave up and got up with my husband and made coffee and tried to stop thinking about it.  I had my gloves on I wear for hand swelling at night and when I took it off in light I couldn't believe the difference it how it looked.  Oh goodness.  No wonder it's hurting even more.  It's even redder and more swollen.  

I called in at 8 when they opened and requested a call from the nurse.  At 10 I called back again.  What gives?  You saw me yesterday, I'm not making this up.  Finally at 1pm they called me back and said I needed a steroid Rx to help get the swelling under control.  All fine and dandy but I could have started on it this am.  Now I will be taking it in the evening when I haven't slept for 2 nights.  Prednisone always keeps me awake.  My pharmacist says, "didn't I see you here yesterday?". Yes sir, for the antibiotic.  In my opinion they should have given me this then too.  And yes, I was here Sunday also picking of three of the many others I take.  That's why you know me by my name.

Tuesday

Tuesday

I get home and eat some yogurt and slam back 3 prednisone's and pray that I'm awake from that and not from the throbbing feeling all night.  Unfortunately the one dose at 3pm didn't handle it.  Now on Wednesday, day 5 of the onset I see something very scary looking under my skin and a small black area under nail.  Of course this scares me.  So another call goes in.  When I reach someone I explain how many days I've taken antibiotic and i've started the prednisone.  The doctor said to call if 3 days go by and it's not better or it starts to drain.  It's not draining but it does feel like my finger will explode if it doesn't soon.  So that means it's not better!   I seriously thought about doing it myself.  I wasn't scared of poking my self just inflicting the pain to drain it.  They asked me to come in at 2:30 and I gladly agreed.

He took one look and said he was surprised I was back.  He really thought we caught it early before infection would get to that point.  He froze a small area and did a little slice and started draining.  It wasn't a pretty site and continued for some time to get it all.  I'd never have imagined he would have got that much out of my finger.  On the way home it felt so much better.  Sore, but I didn't feel the throbbing.  It was just really sore and tender.  The tough part was he wanted me to try at least 3 more time before bedtime to squeeze some more infection out.  UGH...I guess I can do this.  Yes you can he said if you don't want to come see me again.  I managed to get it done.  

Before doctor

4 hours later

I had mild throbbing and I slept so good.  I still had to keep it propped up because it tried to swell up again.  It got bumped and banged all day on Thursday.  It's the pointer finger on my prominent hand so every thing I do uses it.  Starting my car, unlock the door, writing, typing.  As long as it doesn't go on as long as the elbow pain I'm good.  I was feeling a little better that day and of course on the prednisone I feel like superwoman.  I bit off a little to much. It was throbbing again this evening.  It still looks amazingly better though.  Not sure why the swelling is sticking around.  I thought by Thursday night it would be gone but not yet.

Here it is Friday.  When I show up for OT/PT both therapist and the hand specialist wanted to know the scoop on my finger.  I showed them the pictures and of course they wanted me to uncover and see how it looked today.  It's still swollen on the underside and numb.  The hand specialist said if it was staff it will take a full 7-10 days to completely clear up.  The OT was smiling at how excited I was that my arm/elbow feels perfectly normal on this prednisone.  Of course I did have the dry needling done last week with the PT on my elbow so she deserves some credit too!  I can't wait to finish the prednisone and see how it really feels.  We did some more needling on my back today.  Nothing fun about it but I think it's helping.

So there it is, between the FM pain and this nasty infection in my finger I just couldn't bring myself to type a post.  I've been so tired.  Not even checking my email.  I really need to take a little time and get some of my surveys done before they kick me out of the program.   I've done what I can to get a little exercise in.  Trying not to worry too much because I've done ok with the WW's.  I'd would like to have lost more but I gained one the week starting Thanksgiving and back down this week.  You never know?  Somehow I deleted my picture.  You'll just have to take my word for it.  lol

I'll be challenged next week starting my treat making for all my doctors and some neighbors I like to share with.  I just try to lick the bowl instead of a sample.  My husband and I didn't get to do anything for our anniversary so we are going to dinner tomorrow night.  After we're going to stop by the outlet mall and after I pick up what is on my list for there, I will be really close to being finished shopping for Christmas.  

My mom and I

Happy Birthday D and mom

Filled with H.O.P.E. this week especially.  Hope everyone is enjoying this holiday time and not feeling stressed out over it.  It will come and go no matter what we get done so take a deep breath and enjoy the reason for the season.

Theresa

Fibromyalgia - a controversial silent disease

I will apologize right away for the length of this blog.  I've been coming back to the draft for days trying to cut out things but everything is important to "me".

Since my post in September where I open myself to ridicule of telling how saddened I am to have it confirmed I have Fibromyalgia(FM) I've done a lot of research. More intense research than when he first starting talking to me about it years ago.  Then, I was reading all medical sites like WebMD, The MayoClinic, Wikipedia and Ask.com.  There were more but these are the ones you would recognize.  Since September I've been on a different search.  Reading from patients mouths, hearts and minds.

Never in all my years of dealing with my numerous aches and pains; back, muscles and joints have I felt so vindicated by strangers. Every blog or article I read was exactly how I've felt and feel. FM patients are good at hiding their pain for fear of ridicule. As I mentioned over a year ago even a doctor I worked for thought FM patients are just crazy and that's the title the doctor gives them because they can't find anything else to diagnose.  That is so far from the truth.  Our pain is real.

You don't walk into your rheumatologists office and have them diagnose you with FM in one visit or even one year. I write this post to share with you a few bits and pieces that were important to me.  Important because it validates everything I have tried to understand over the past years.  Why do I hurt everywhere?  Why am I so tired all the time?  Why can't I sleep? Why is it so much worse when I first get up in the morning?  All this time I've been looking to my doctors for answers when others who feel just like me had all the answers.

I remember searching to see if someone with a Spinal cord Stimulator had a blog. I found a few.  Reading them inspired me to write, even if no one read.  It made me fill like I would get things off my chest.  Now I am searching through so many more Fibromyalgia blogs than I ever thought I'd see.  I believe I read 1 in 20 people have FM.  Every definition down to the detail is how I am feeling and felt for a long time.  To some, it would have made them more depressed. For me it has been encouraging.  This blog world is my support.  Not to say my family and friends are not, but your still tend to doubt even if the people you love understand.  

I can be fine one day and another I can do something that is simple for most people.  After I am done I really to tired to do anything else.  My husband struggles with this.  When I say I am so tired he wants to know why?    

One thing I read in common was how no matter how much pain or how bad of a day a blogger was having they made their self exercise if they could possibly do it. I've read walking and swimming are two of the best exercises for FM.  A plus since they are great for my back also.  The problem is I'm doing very little walking these days but not because I don't want to.  For some reason when I'm hurting I can tolerate my recumbent bike much better.  If I stop moving I will become so stiff the end result will be bad.  

Exercise is very important for anyone, but especially if your dealing with chronic pain.  Chronic pain = depression + FM = depression + exercise = accomplishment. On the other side of that coin I'm learning to say no, to go lay down if I need to and not let the undone things bother me so much. 

At my OT appointment on Tuesday the PT did some dry needling for me on my triceps and the muscle where it meets the tendon near elbow.  It wasn't that bad compared to procedures I've been through previously.  It was by no means comfortable though.  It's to soon to tell how much it has helped.  The swelling is down to an inch now so that is definite improvement.  I go back Friday and she will re evaluate everything and write my notes for my rheumatologist on our progress.  I can't help but wonder if the FM has exacerbated the whole experience.  

Below are some pieces I mentioned in the beginning.  If you have FM you know all about it.  If you don't, you may know someone who does and it will help you have a better understanding what their day to day life is like.  I think we all want empathy not sympathy. 

From Scope- an award winning medical blog


I can’t imagine anyone relishing the idea of being tired, in pain, or suffering from “brain fog” for one day, let alone for months or years. If you have fibromyalgia, this is what you experience on a regular basis. Yet there are people who believe that fibromyalgia doesn’t exist – that it’s a made-up disease with the purpose of appeasing patients, giving their complaints a name.

Incidences of muscle pains characteristic of modern-day fibromyalgia have been documented for centuries, but only in the 1970s did the disease begin receiving serious attention as physicians began to better identify trigger points, inflammation, and fibromyalgia-associated issues such as sleep disorders and irritable bowel. And only in 1987 did the American Medical Association recognize fibromyalgia as “an emerging condition.” But saying it’s a disease and convincing non-believers are two different things.

I’ve been asked what it’s like to have fibromyalgia and, just as it’s difficult to diagnose, it’s difficult to explain. Although I was only diagnosed a few years ago, I can trace the symptoms to my teens. I often experienced unexplained bouts of exhaustion and pain. I never slept well. I had other fibromyalgia-related physical issues, but no one could figure out what was wrong. After a while, I began to believe that it was all in my head. I knew I felt the pain, but there was no explanation. I knew I was exhausted, but everyone is tired – why would I be any different? The other symptoms? I was overplaying them, complaining too much, imagining them, looking for attention, wasn’t I?

My family and close friends were (and still are) wonderful. They never made me believe that I shouldn’t be feeling what I was experiencing. They tolerated my quirks, such as the hypersensitivity that results in a very strong startle reflex and not being able to stand the feel of certain things against my skin. (It wouldn’t surprise me if the princess in fairy tale The Princess and the Pea had fibromyalgia!) My husband, my children, my friends, all helped me when the pain was bad and the exhaustion overwhelming. But feeling so different and not knowing why take a toll on a person.

I did what many with fibromyalgia do. I withdrew into myself. By withdrawing, you minimize your chances of being criticized or attacked by those who don’t understand your “nonexistent” illness. But at the same time, because you are internalizing everything, your symptoms become worse. Your mind plays more games. And the cycle continues.


I cried when my rheumatologist told me I had fibromyalgia. I told him I wasn’t crying because I had it, I was crying because I finally had validation – that this was real. My pain was real. My illness was real. He told me that many patients react the same way. How sad.

A year ago, I began a project called 101 Questions About Fibromyalgia. I asked friends and colleagues for questions, either from the point of view of having fibromyalgia or loving someone who does. I received some great questions but I also received a long e-mail from an editor whom I had never met. Her angry e-mail outlined exactly why fibromyalgia doesn’t exist, point for point, but she also told me that if having a name for my illness made me feel better about myself, then it was OK with her.

This is why many people with fibromyalgia don’t speak out. There is no such anger against people who say they have diabetes or cancer or Crohn’s disease – but it’s acceptable to brush off, deny, or criticize a claim that you have fibromyalgia.

Living with any invisible illness can be difficult. Living with one that still is not accepted by many is so much harder.

Marijke Vroomen Durning, RN, is a health writer based in Montreal, Canada. She is a contributor at Forbes.com, HealthDay News, and other outlets. Find her on Twitter @MarijkeD.


Fibromyalgia is a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety. (National Library of Medicine)

COPING:

Fibromyalgia is a persistent condition for which there is no cure. It is common for symptoms of fibromyalgia to wax and wane; they may be more severe at certain times of the day, month, or year and they may remit for an extended period of time only to reappear later either for no apparent reason or following a traumatic event such as an automobile accident. But there are ways of coping with fibromyalgia symptoms and preventing exacerbation of pain. Here are some tips:

• Prioritize sleep – it is important for people with fibromyalgia to maintain a regular sleep schedule and to get treatment for sleep disorders if necessary.
• Create a quiet environment –chronic pain has been known to intensify in the presence of sound stress.
• Exercise – regular exercise is known to improve symptoms in some patients. For people with fibromyalgia, low-impact activities such as walking, yoga or swimming are the best choice.
• Medication – work with a physician to develop an effective medication regime.
• Massage – gentle massage, deep breathing, and relaxation techniques are all generally considered beneficial with respect to chronic pain management.

SYMPTOMS:

Fibromyalgia usually includes a broad range of symptoms including some combination of the following:

• widespread pain
• sleep disturbances
• chronic daytime fatigue
• morning stiffness in the joints and muscles
• migraine headaches
• irritable bowel syndrome
• painful menstrual periods
• numbness or tingling of the extremities
• restless legs syndrome
• temperature sensitivity
• dizziness and balance problems
• cognitive and memory problems
• mood disturbance such as depression and anxiety

Out of these 13 symptoms I have experienced 10 of them.  2 were in the past and much better but I still wonder? (irritable bowel syndrome and painful menstrual periods) The others are just like the COPING definition.  As bad as I hated having Dr. C tell me this news it feels good to understand what is happening to my body.  A lot of these symptoms I have never shared fearing people will just think I'm crazy.   Temperature sensitivity...oh I definitely deal with that.  Off the scale.  Ask my husband or my daughter.  The last one has been chronic for some time now,(especially the anxiety), but I've convinced myself it was due to my back pain.  My doctors agree, except for Dr. C.  My pain management doctor is the one who had me try two different medications that are commonly used for patients with FM. (Cymbalta and Savalla) Unfortunately neither worked. He never used the title he was just responding to my complaints of hurting everywhere.  

When Marijke spoke of not being able to stand certain things against her skin I almost jumped out of mine.  I never discuss that with anyone.  My husband has heard it a lot but even he gives me the strangest looks.  There are times that I can't be in the same bed with him because he has PLM and if his leg is moving I'm so sensitive to it I have to move!

The last I'd like to say, you know I mean for today, is that my mom has Fibromyalgia and Restless Leg Syndrome. The National Sleep foundation has written that there may be an association between FM and RLS. It's most common (RLS) in patients with FM and those with Rheumatoid Arthritis and she has both.  So what am I crying about?  The NSF also states that FM seems to run in the family though not knowing if genetic or environmental.  I have and continue to pray for both of my children that they don't start experiencing symptoms.  One of the hardest things of dealing with it is getting answers.  

To my friends and family, thank you for putting up with me.  I know you often wonder why I back out or just don't feel like it so many times. Your no need to know attitude has carried me far.
I have the greatest husband any one could ask for.  Even he struggles to live with the depression and anxiety with me.  You see I'm really good at acting.  When I do go out, I fall apart when I come home and he catches me every time.  

Lots of genuine hugs and H.O.P.E. to everyone dealing with this invisible illness.  Theresa


HOPE looks for the good in people instead of harping on the worst in them.

HOPE opens doors where despair closes them.

HOPE discovers what can be done instead of grumbling about what cannot be done.

HOPE "lights a candle" instead of "cursing the darkness"

HOPE regards problems, small or large, as opportunities.

HOPE cherishes no illusions, nor does it yield to cynicism.

Author unknown