I so wanted to write a pithy post for today, but my body has other plans.
The Fibromyalgia has been acting up all week. Today it has been really bad.
My legs feel like the insides are frozen. They are aching so bad I can’t stand myself. Add to that my arms and my right hip…Ouch!
I don’t know if I am the only one here with this struggle, but…
I have CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) as my primary illness with FMS (Fibromyalgia) secondary to it.
One of the frustrating aspects of having both is that I never seem to get away from not having some sort of flare-up. This week it has predominantly been the FMS with the CFIDS in the background, if you will. The first four (4) months of the year, it was the CFIDS.
Having one or the other flare-up is one thing. But because I have both illnesses, one flare-up causes the other illness to then flare-up. So as I am coming out of one, I roll into the other! So frustrating. And tiring.
I remember a time when I use to have several days a month where I was normal, meaning I was 100% of who I was before I got sick. Gosh, I used to love those days. It was amazing what I could accomplish in one day with all my old energy back and no pain or cognitive dysfunction!
Anyway, this vicious cycle of repeating one illness flare-up after the other, at times, makes me feel like I am stuck in that movie, Ground Hog Day, (I think that’s right). You know, where the guy wakes up and repeats the previous day over and over and over. Seriously, sometimes that is how my life feels.
I know part of the reason for this flare-up of the FMS is the rainy weather. Humidity will do it to me as well. Then add the stress of a wedding, laptop fiasco, my dad’s surgery and cancer, and so forth and so on. Well, stress definitely does not help.
I can’t imagine what this week would have been like if I had not been taking a stress herbal remedy! Yikes! I tell you, New Chapter, is becoming my favorite herbal product. I cannot believe how well these herbs work for me.
Now if they could just create one that would magically make CFIDS and FMS disappear. It wouldn’t even have to be permanently. I would settle for one or two good days a week. Heck! One or two good days a month would be okay too!
Oh, that would be so lovely. The first thing I would do is put on my running shoes and go for a long run. Oh my gosh! That would be heavenly. Then I would clean my whole house from top to bottom, but the really deep kind of cleaning. You know the kind that is so clean you can serve dinner off the floor!? Uh huh?
I would end the day with dinner at PF Changs and a night of dancing. It has been so long since I have danced. That would be a really great day! Gosh, I think I’d even settle for one day a month if it could be that good! Sigh…
Having one day a month that I could do anything I wanted … Well, that would most definitely be a great day!
Determined to continue forward,
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Dominique, My first dx was CFIDS and then after my recent relapse (January), a return trip to my internist gave me dx of Fibro as well (although I had long knew this even before he confirmed it.) He said both illness are related and while most people usually have only one, they have a few tendencies from the other (so people with CFIDS may have some of the achiness that goes along with Fibro etc.)
He went on to say I know have both (hmmm…I guess that makes you and me two of the ‘lucky’ ones…eh?
…..)
And….having one day where we felt like ourselves again (and didn’t fear the next day pay backs for having a day like that)….yes…that *would* be a GREAT day!!
.-= Linda´s last blog ..From years gone by… =-.
Linda – So we share another commonality, huh! It one I wouldn’t wish on you however. It does make it a little more challenging, I think.
Yes, it would be a great day. I would like to have a great day!
dominique i have suffered with cfids for 20 years also bedridden for the first 7 years. was told i had fibro around year 5. about 4 years ago i was in so much pain and fatique i truly did not want to wake up. my gastro had found out i had yeast in my bowels that got so bad was in my blood stream. i tried detox a trim otc that was like a miricle the cause of my fibro was yeast. still have flare ups. it seems when i find something that works and never works forever. still struggling but thought you might find that info helpful. i enjoy reading your blog. i am new to the world of computers but it really is great for us with cfids best of luck to you i will say a prayer for your father godbless robyn
Robyn – Thank you so much for not only dropping by, but leaving a ‘note’! Your journey sounds similar to mine. I was bed bound – on and off – for about 2-3 years so I really get that. I have heard about the yeast culpability. I now eat a healthy diet that I get from a farm. I am almost down to no gluten products whatsoever, plus I have cut out most of my fat (a little is still good of course) and and most of the sugars.
I added digestive enzymes, live pro-biotic and a colon cleanse which has really helped. My FMS flare-ups are a lot less frequent then they use to be. I actually seem to do really well with them now.
I also added upper-cervical chiropractic care, stretching (yoga), walking (when I can) and massages (when I can get it into the budget) which all help. Chiropractic care has been a God send for me.
I am so glad you enjoy reading my blog. I am still amazed that people find it so interesting or relate-able. I am thoroughly thrilled that they do, however!
I understand, completely, that struggle to find something that works, only to find it works for awhile and then you have to start over. I hope they find out the cause of FMS some day soon!
Thank you so much for praying for my dad. I am humbled that you would do so!
Than God for computers, huh! What a difference technology makes for those of us who struggle to live within our 4walls!
I am looking forward to getting to know you a little better. Don’t be a stranger, okay?
Again, thanks for sharing! Gentle hugs!
I was so happy for you when your 6 plus weeks with a virus ended
and for I’m guessing a short time you were feeling quite a bit
better — than the rain and all the stress- and now the severe FM.
I’m so sorry to hear that is going on. You wondered who here had
both CFS and FM. I have very severe CFS -95% housebound and
often couch bond when too much happens in life or I overdo. I am
fortunate to have very mild FM. It was interesting what Linda said
in her reply – that someone like me could have tendencies towards
FM also. I’m so fortunate that when I ache it isn’t often (like
not monthly) but it reoccurs at times and I’m fortunate that OTC
pain med takes care of it. Now my mother developed moderate
FM (sometime close to severe pain) in her early 60′s. Makes me
think their is probably a genetic predisposition to these disease.
I’m praying you will be relieved of the severe FM pain soon. And
I hope the next news about your dad is good news.
Patricia – Well, my hypothesis is definitely being proved wrong! LOL With the herbal supplement I take, the Phenocane, I actually do really well with the FMS. If you will notice, my blog has been predominantly about CFIDS because for me that is the most difficult one. Wow, 95% housebound. I’ve never thought of it that way. I’m not sure I could even figure that out. I know I’m in my apartment more than out but how much, I really don’t know. I will have to think about that one.
I think for me it also depends on the time of year. Summer is my best time so I am able to do a lot more than in the winter.
As far as my dad is doing. They moved him out of ICU into a second ICU that isn’t quite as bad. He is still hooked up to lots of wires and what not but his vitals – according to the doctors – are good. He is having a very difficult time, however, with pain and being in the hospital. Plus he had an adverse reaction to the antibiotics they put him on.
My mom is really stressed out and called asking me to pray for her, so if you could keep her in your prayers as well, that would be great.
Thanks for asking, btw. Hugs to you!
Dominique, Twenty years ago I became ill with CFIDS. About two years in the FMS dx was given. I was bedridden for most of those early years and some where along the way was given the Chronic Mayofascial Pain Syndrome dx as well. So I really understand about layering the illnesses on top of one another.
I am just pulling out of a CFIDS crash and now the Fibro flare and CMP is just horrible. I tell my husband that I get so tired of the “wheel of symtoms”. It seems like just when I am begging in my mind to be able to get past the weakness and flulike CFIDS crash mess so I can brush my own teeth without it being a major task, that right on the hells comes the PAIN. And that is just so hard to deal with.
Yes, I am thankful to be out of bed and having conversation with my hubby again. But when the pain is so front and center…..Well, you know how it is. But we do deal with it and it does pass.
Right now I am in PT doing some mayofascial release and a very little bit trigger point therapy. It helps but have to be ever so careful not to make things worse as we all know so well.
I hope you are able to find a way to make it through this current flare and that it doesnt cause you to crash again. I know how heartbreaking the cycle is….
Susie
Susie – Hi and thank you for sharing your story. Your story sounds like mine!
To be honest I am almost at my breaking point. It the pain doesn’t start to subside by Monday, I will need to get an injection. I haven’t had to get one in over a year. I manage the FMS really well with an herbal treatment, but every once in awhile, I have a really bad flare-up like this one.
You are right that we get through it. I am so ready for summer and hot weather so I can start to feel better for a longer period of time. Summer is always so much kinder to me!
My chiropractor has started working on one of my trigger points near my right shoulder. It causes such havoc that I have pain all the way down my right side and can even have problems moving my head left/right. Even though it can ‘smart’ it really helps break up the trigger pint and release it so I can get some relief. Love that.
Thanks for dropping in and sharing your story.
I think we are already friends just as a result of life experience!
If you don’t mind me asking, what kind of injection do you get? I have had Botox in different areas in my neck and shoulders to help ward off Migraines. It has been helpful.
I was amazed about the location of your current trigger point therapy work, as that is the EXACT same area that I am having such trouble with too. My shoulder has so many and they shoot right up to my neck,ear and jaw and down the other way to my fingers. My PT is ever so gentle to not work but one if even that because she is afraid to send me back to being bedbound if she gets too enthusiastic. And oh yes does it hurt when she does the littlest bit of work.
She recently had me try EMU OIL to rub on my sore and aching body. It has anti-inflamatory properties and some people with FMS get some releif even though it is not an inflamatory process. During myofascial release with her she has used it and I must say that I do feel a bit better for about two hours. So I ordered some. We will see if it is all placebo…But even if it is my mind making me think it is helping, that is okay to give any ounce of comfort.
What a Godsend it is to find you all online to share this battle with. The ups and the downs. It was only during the latest bad crash that I started looking at CFIDS/FMS blogs and I have to say it is such a suprise to find people just like me. I too am also about 95% housebound and other than my husband and doctors don’t have and outlet for this type of talk.
I hope the warmer months do make you feel better (I am in a sub-tropical area so I have a hard time in the heat)and that the next few days give us all a little break with the pain. Here’s to finding your comfort tools, what ever they may be, audiobook, heating pad, pillow and blanket are my favorites. And curling up for some self care.
Susie
Susie – I get injections of Toridal usually but they use other drugs to get the pain under control when I can’t. The last flare-up I had was 18 months ago and I had to have 3 injections. Morphine (I think), Toridol, and another one. It took three to just take the edge off so I could relax and not groan in pain. The pain was coming in waves like I was having a kidney stone but the doctor said what happened is I waited too long and the FMS flare-up caused me to have muscle spasms which caused my back injury to flare-up and all hell broke loose after that! It was very, very painful. Once I had that third injection, however, I felt much better!
My chiropractor uses this tool I call a jack hammer. I have no idea what the real name is. He actually laughs when I refer to it that way! Anyway, it ‘pounds’ into the trigger point(s) just like a jack hammer and ‘breaks’ it up. I actually look forward to getting it done. No pain,no gain, right! Anyway, he got a newer version last time I was there, and it worked even better. I’ve been thinking I need to pay him a visit this coming week when I get paid, but I have to get a ride so all the details have to be worked out first.
I will be glad when my daughter’s wedding is paid for so I can start saving for a car!
Susie – I hope and pray that today is you best day yet! I’m excited to have ‘met’ you and look forward to walking out this journey with you! Here’s to staying ‘determined to continue forward!’
Hi Dominique
Glad to hear your dad is in ICU2 and vitals are good. One step at a time…. Sorry your pain continues. Today the pain is so bad ~ and nothing seems to help it ever~ It has surprised me as it has not been like this in muscles for years. I am thinking the surgery is still the underlying cause as my liver is a slow detoxer and the GYN said it would take a month for a healthy person to get rid of all anesthetics from body. I guess, I wanted to ask you if sometime you could share what herbal remedies you take for pain, sleep, anxiety, or anything? I am going to ask my LLMD about them…and I will be seeing my LLMD’s homeopathic Dr. in May for help in all areas…She is a medical doctor who went back to school to treat with homeopathy. It helped me in the past.
Off to rest.
Will keep your dad in my prayers and add your mom…and you. Thanks for your comments on my blog..
Hugs
R
.-= Renee´s last blog ..Saturday’s Scribbles =-.
Renee – Yes, I actually have a post that I am planning on writing on that very subject coming up soon. BTW, as for the anesthetics, I have an herbal tea – cinamon flavor – that is designed to naturally detox the body. I get it from a company called Sunrider. I have been drinking their tea for years now because I have come to believe I need to be constantly flushing my system out. If you would like, I can send you one or two. It makes a gallon. Let me know.
Most of the herbs I do are probably not homeopathic as I don’t always get great results from them. But I will make it a point of putting that post together this week (I will try – my pain levels are increasing and I am thinking I may need to go and get a shot if this doesn’t ease by Monday.)
I’m sorry you are in so much pain. I wouldn’t be surprised to find out that a side affect from the anesthetics is muscle pain. Anyway, I will be saying a prayer for you today.
Gentle hugs to you and your husband. I hope you have a restful day Sunday.
Your hypothesis is probably correct for some people that having
CFS and FM — that one can set the other off. I think that is
what your hypothesis was. We have so much in common but what is
so mysterious about FM and CFS is the variations in the symptoms and the severity.
(–About 95% housebound – I don’t know if that is accurate
exactly – but I can go out once a week only because my church is
a 5 minute drive and I sit there the whole time. The getting up
and going by 9:30am is real difficult; but it helps me so much to go.
Otherwise I only go out to med/dental and I try to pace that out
so I don’t have more than one or less/per month. When other demands
come up it is very very difficult and something has to give -
rescheduling, cancelling, missing church. That is how I came up
with a high percentage of being housebound.–quite a long aside!)
It seems the commonality has to be the severe fatigue and post
extertional worsening of fatigue – post exertional malaise.
I’m glad your Dad is in ICU2 and hope each day there will be
improvments. Dear Lord Jesus – I praise you for the privilege
of bringing everything to you in prayer. So I’m asking that
Dominique’s mother will soon come to a place of more emotional
peace and rest and comfort. In your precious name Lord, I pray AMEN.
It occurs to me that I might be posting too late in the day; especially
if I post two times. You are on to writing the next day’s post and it must
be a bit of a chore to back track for late post. I figure it is
two hours earlier aprox there in Tulsa than in my town, Oak Grove,
Oregon. It is about 7:47 pm your time as I write and probably
you may not see this, but that is ok. God heard my prayer and
that is th most important things.
Patricia – We are two hours difference. Odd. I thought it was just one hour. Anyway. I won’t be writing again until Monday as Saturday and Sunday are my rest days. Today was spent dealing with ever increasing pain. Ugh. I don’t know which one I’d rather have if I had to choose one. Fatigue or pain. Probably fatigue. I don’t do so well with pain.
Yeah, I would agree with your assessment of 95%. Holy Cow. I get out more than that. I actually got out for a movie this week (and then crashed for half a day). And I do my own grocery shopping although since I joined the co-op, it so much easier. They have it ready. I just walk in and pick it up and that’s it. I have to get it every week but so far that has been okay. I have a friend who does it with me so she drives. Thank God.
Because I live on the river and have Dekker, I get out one or 2 times a day a do some walking whether for 5 minutes or 20 minutes. So I am probably more at the 75% ish I would guess. Again, it really depends on the season. Summer is my best time of year while winter is the worst.
Enjoy church tomorrow. I am going to be watching it live broadcast on my laptop. I love that my church does that!
So sorry you are getting these repeated flares. I get the inside frozen leg, but only in my right leg. Like someone has poured ice water down the middle of it. I can sympathise a little. I’m CFS with FMS too. Stress will make it worse and it sounds like you have a whole lot of that on your plate.
I miss dancing too.
Take care of yourself now.
.-= Jo´s last blog ..White Knuckle Ride =-.
Jo –
I can actually see you dancing, JO! I would gander a guess that you are pretty good at it! Hope this finds you doing better today!
I’m very sad – did not go to church. My Sammy
dog is 15 and he won’t eat. I did talk to my brother in Alaska
I know to diagnose the problem will cost several hundred dollare with
the physical and then the possiblities are probably serious
and difficult to treat and costly. My brother has told me to
feed him whatever he will eat – I’ve tried EVERYTHING. Today he
only drinks water and non fat milk. He isn’t especially weak YET
I wish I was rich I would do everything even if the end result
is his passing anyway. I’m asking God to help me stay calm in
my emotions. I’ve asked my daughter/son in law to be on call
to drive me to the emergency vet when needed. At least they
are aware, but they aren’t always avaliable. I’m praying a lot
for comfort and calmness of emotion and that if the time comes
someone will be easily avilable as I cannot drive in heavy
traffic and places I haven’t gone to since I could do “real”
driving – freeways and across town. I prayed last night
that if Sammy’s time is here that I would find him gone this
am – it is torture to go on and on and not be able to just get
in the car and go spend the money and do my supreme best for him.
The waiting is so hard. At first I thought he was having an
upset tummy and put him on rice and boiled chicken breast -
but for three days he is only eating about an ounce or so of
whatever I’ve tried. Maybe I should not send this you are
emotionally upset about your dad and mom and in pain. Maybe on
Monday you will check here and maybe not. If you do Please
pray for me my heart is breaking. I’ve had sammy for 15 years
and we have never been separated not even one day. I’m trying
to focus on how remarkbable a blessing that is and being
grateful rather than focusing on loss – but I go back and forth.
Patricia – My heart is breaking for you, my friend. Oh my…what a most difficult and challenging moment. Please, never feel bad about being ‘real’ on my blog. I so admire that about you.
I hope you don’t mind if I pray for you…
“Father Lord, I come before you, with heavy heart. Patricia’s closest friend is not feeling well today. I ask for your miraculous touch, Lord. I ask for healing, strength and a return of appetite. Lord, I ask that you would give Patricia a peace that surpasses all understanding. That you would quiet her mind and extend your hands to her as you guide her forth this day.
Father, if this is the moment in time for Sam to go home, I ask that you prepare Patricia’s heart. I ask that you enable her to let him go. I understand how difficult this is, but I know that with your power and your strength, Patricia can do it.
I ask father for any and all divine appointments to happen at exactly the right moment for Patricia. May you not only be her God today, but her friend and husband, as well, in this moment of need.
I surrender this difficult situation to you, Lord, and trust and believe that you will work this all out for good. Amen.
Feel free to use my blog as a way to keep me up-to-date and or to just talk.
Hugs and more hugs!
GOD BLESS YOU DOMINIQUE I’M HOLDING UP PRETTY GOOD. I’M SUPPOSE
TO CRY AND BE SAD. BUT I ALSO NEED TO BALANCE THINGS WITH
TRUST AND PEACE THAT ALL WILL BE WELL. YOUR PRAYER BROUGHT
GOOD TEARS AND I’M GOING TO PRINT IT OUT SO I CAN READ IT AS
OFTEN AS IS WISH WHICH WILL BE A LOT. I WILL TELL YOU HOW
IT ALL RESOLVES. THANK YOU SO MUCH FOR SUCH A WONDERFUL PRAYER.
Patricia –