Terrified

Support
1

I'm new to this site. I joined it a while ago in a moment of strength and hope for the future. Such strength quickly waned and I shied away from here.

I didn't know why. I thought then it was the anxiety of socialization or the stress of expectations (all built up in my own mind of course).

Tonight I realized what it was: fear. Fear to acknowledge I was sick. Fear that by acknowledging my fibromyalgia, it would mean its won and I've lost. Fear that I was resigning myself to let it overtake me.

I sit here, 5am, not having gotten a wink of sleep because of my pain. Day and night it plagues me. I am either in bed or in my desk chair, my mind addled with the pain and me struggling just to find the energy to bear through it to make it to the kitchen to get water, or the bathroom.

Honestly, in the last month or two it feels like its been a landslide of just getting worse and worse. Where just over 8 weeks ago I could go out to pie and coffee at Shari's with my husband with ease, I now can barely fathom it. I have good days, and on those days I go out, but even on the best of days I can no longer walk without the assistance of a cane.

A cane...

I'm 24 years old and I am resigned to using a cane for the simple act of walking...

...not to mention in the last 2 months I have only slept in the same bed as my husband a less than half a dozen times. I have my own room set up with a desk and my computer and my own bed so I can have a space that's warmer than the rest of the house and can facilitate my up and down lifestyle and the me being awake till all hours of the morning.

I'm terrified. I feel like my fibromyalgia is swallowing me whole and I don't know what to do. I'm trying meds - Gabapentin. I use a heating pad to help with the pain.

The last doctor I saw, his aid gave me the lecture on exercise. I know. I know exercise has been found to be the best medicine but...I just wanted to strangle him and say, "Dear God man! Can you even fathom what I feel like? What it feels like to be in this much pain? I can barely walk to the bathroom, how do you expect me to exercise regularly?"

**sighs**

I'm lost. I hurt all the time...it never ends. It never stops. Its just a game each day to decide what action must I do today and how much of my energy will it take up...how much pain will it cause

I'm sure it doesn't help that I live in Seattle and there are always weather systems moving in and out which wreck havoc on everything. Why is that, I wonder? Still, what I wouldn't give for a few weeks of sunshine and no rain storms.

I'm sorry if this seems like a rant, or a pity trip. I do not mean it that way. I know there are people out there who have it so much worse than me. Who have come back from so much worse than I have. Still, its hard. So very very hard...

I'm terrified.

I'm 24 and I feel like my life is fading away rather than just beginning...

2

Hello Calli

Has the doctor sent you to physical therapy? I went to aqua therapy awhile back and it really helped. The theripist also showed me exercises to do before i get out of bed and they help. Talking to a counslor about depression may also help. I went many years with no problems at all sometimes it takes awhile to find the right combination of things to help the group is always here to offer suppport.

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I am seeing a counselor for my depression and it is really helping. Thank you for your help and support.

As for physical therapy, not yet. It takes forever to get appts with my doc. Aqua therapy sounds lovely, I'd just have to make sure to find a saline pool nearby (allergic to chlorine).

Good ideas. Thank you.

4

**gentle hugs** Calli, I understand where you're coming from. I've been given the lecture, from more than one person, about being the one who overcomes the disability instead of BECOMING the disability. I bit my tongue, but in my mind I was thinking, yeah, sure, right, live my life for one day and then give me that speech. When my symptoms first started everyone, including my parents, thought it was all in my head. Or, it was a bid for attention/sympathy. Not being able to stand the feel of cloth on your skin isn't a bid for attention. (I'm not an exhibitionist)

I, too, am on Gabapentin. It's the only fibro medication my system will tolerate. I believe it's messing with my memory and brain function BIG time, but I cannot go back to what it was like with no medication at all. Perhaps you need to up the amount of it that you are taking. I finally plateaued at 800 mg, 3 times a day. And, btw, 800 mg is the largest dose of it that they make. Does your doctor specialize in fribro? If not, perhaps you might think about finding one who does. I know, sometimes that's easier said than done.

As for the pain, yes even on that high of a dose of Gabapentin I still have pain. Are you taking any pain pills? Adding that to the Gabapentin might help. But I must tell you that even with both of those meds, I still have some pain, but it is nothing like what I experience with no meds at all. A friend of mine who has this told me to try to compartmentalize things. When I start to feel the pain, mentally I acknowledge it, imagine an impregnable box and put the pain in it, seal it up, ignore it and go on with things. Now, this doesn't always help, but over the years I've become better at ignoring the pain.

My doctor also has me on Xanax. The reason for this is two-fold. One, it is a type of muscle relaxer--that helps with sleeping. Two, it does help with stress. I don't have anxiety attacks--anymore. I use to. Then I divorced the reason for them and they went away LOL ;) However, stress I can't seem to get away from. I tried sleeping pills. The one that sort of worked was Lunesta. I did sleep, but I didn't dream. I don't think I achieved REM sleep while on those and woke up feeling not rested at all. With the Xanax I sort of do. These days "sort of" is about all I can hope for. My doctor told me restful sleep during the normal circadian cycle is the best thing you can do for this. I guess at this stage of research on this disease everyone has an opinion of what works best. I think what works best is what works best FOR YOU.

I can't do the exercise thing either, it seems to make it worse. The most I get out of it is a small amount of the endorphins that hit your brain when you finish exercising. And they didn't last that long. Then my body hurt worse from "using it". I usually have to "roll" myself out of bed in the morning. By the time I wake up, my rib cage feels like it's wearing a jacket of fishing lead weights. As if there's one tied to, and hanging off of, each rib. Spaced about one inch apart. I have to take my meds first thing when I get out of bed. And then I have to wait for them to start working before I can be somewhat functional. Of course, you could try my Dad's solution for everything: Jack Daniels! LOLOL ;) He says it'll kill you or cure you. Either way. . . YOU WON'T CARE! :) Just kidding, my Dad rarely drinks the stuff, it's just his brand of humor.

I tried the nutritional diet for this--for as long as I could afford it. It didn't help at all. I have no idea why. And no matter which type of vitamin I take, they never seem to do any good. I tried the liquid, supposedly fibro patients absorbs nutrients better if they're in liquid form, it didn't seem to help either. As for getting the nutrition from the food I eat, sad to say, but I simply do not have the money to buy the "good" stuff. I wonder, sometimes, if it's not the way the food I can afford has been nutritionally degraded that contributes to this. Who knows?

I know it's hard, but don't feel bad about the cane. I have to use one, too. If you have the means, there are some very lovely "walking sticks" you can get to accessorize your wardrobe. That's one way you can turn the negative into a positive. And my husband thought I had too many shoes to go with my outfits! LOLOL Or if you have one of those hurry canes, find a way to decorate it. Personalize it for you.

Sorry for my rambling. I just want you to know you're not alone with this. And I hope some of this helps you.

5

Dear Calli,

I understand how you feel, we all do! It's not something that is easily accepted or shrugged off.

By coming here and seeing a counselor, you are on the right track. It helps to put it all out there, as something good will always come back to you. It may be a much needed friend or two, a way to cope, or just a smile!

I lived in Seattle for a year, and it was one of the toughest years of my life! The weather is hard enough for a native, but for a transplant it's a mountain to climb, to find warmth and sunshine. We've had an exceptionally tough winter here on the east coast, and though it was 60 degrees Saturday, it calls for snow tomorrow and Wednesday. My body is screaming already!

When the barometric pressure, from building storms, DROPS, it expands (swells) the body and makes it thump! That is the best explanation I have had to date, from my Chriopractor.

Though I have fibro, my Rheumatologist tells me that is the very least of my problems, the arthritis of the spine is the worst, without a doubt, the bouts of exhaustion/fatigue comes second. The more inactive I am, the worse I am, moving is a necessity for me, or I 'lock up', and walking and stretching are best for me, though they still want cardio!

If you have not seen a Rheumatologist, you may want to ask your Doctor for a referral to one, though it may take months to get an appointment, it never hurts to have a real expert keep an eye on you.

Keep a running list of the things you want to tell or ask the Doctor, and start asking about family history. See if anyone else in your family has fibro or autoimmune. The more you know the better care you will have. Being informed is being armed to advocate for the very best care you can have.

I'm glad you came back to LWF, if anyone understands, it's the people here!

Sending a hug, and wishing you well,

SK

6

I feel your pain, I'm 44 and although I'm much older I feel responsible of being there for my family...I'm the biggest provider for my family so they rely on me for a wife life, mother life, working life and I barely can make it.

I enjoy what I do for living but I don't feel I'm living I'm surviving.

Reading this site can be overwhelming you will see people that are worst than you and people that are better than you

I have learned to read and understand that everyone is unique and not necessarily I will feel the same way as others.

The most challenging for me is for my family to understand my symptoms, it is quite challenging for people that are close to you understand that you can get weak, you always feel that the next day will be worst than the previous one.

I really hope you find answers and feel better soon!

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Hello. I’m so glad you felt like you could,post to us. I understand how your feeling.
Heat is best on those bad spots for me. Also I add deep heat with my favorite lotion, which it goes best with eucalyptus and I actually rub it with the deep heat, everywhere. I know about exercise we have this awful feeling that overwhelms us when someone says exercise. Ha ha ha okay. I get this picture in my head grabbing them by the hair and tossing them back and forth… And saying there I’m exercising. (Kidding)
Anyways a walk to the mailbox or the corner is also included if you can do that. Or just lay in bed and do range of motion exercises-- you can see online some. Do whatever you can exercise is can be less, because at this point a little of something is better then nothing. I’m here for you anytime hang in there and I wish I had more suggestions for you.
Joy

8

Dear Calli,

I know it doesn't seem like it, but your life isn't fading away, it's changing. Learning to deal with a chronic illness is difficult. I go through crests and troughs as if I were in the ocean without a raft. Many of us feel that way, and that's why we try to gather together online to support each other in a positive manner. We need it!

There will be canes to support your balance, but there are many ways to look at it... a helpful tool that helps you when you need it .... a fashion accessory (get a pretty cane).

I live my 24 hour days in two 12 hour segments. I sleep 4 hours in my bed, then get up and read. In the afternoon or early evening I take another nap, then get up and spend time with my family.

As you plan your life, the key word will be flexibility. Flexibility of time, of activity level, of thinking demands (cognitive demands), etc.

The weather doesn't help, but then again, as I live in So Calif, I can't say it's better because of smog and rapid weather shifts. Weather is just there. A wardrobe that is comfortable is a must. I wear yoga pants because they can be casual or dressed up. Think comfort.

My husband likes the bedroom cold and I like it very warm. We turn the thermostat up, he kicks off the covers, and I pull the bedspread over my neck. If I cover my neck and arms, it seems to help. We don't have a spare room, so this is what we do to find some sleep together.

Another thing to examine is whether you are getting all the help you need. I have been in physical therapy a number of times, and can now do it at home as needed. I also use a home exercise bicycle in short, easy bursts throughout the day. The less we move, the less we will be able to move. I also have an exercise DVD which focuses on flexibility at a slow pace. It stretches muscles that have tightened and improves my balance.

Whatever you do, don't give up! Don't disappear! Those of us who have had fibro for awhile are happy to share what we know as well as the feelings that go with fibro. This is the most positive board I have found in years, so I think you will find hope, coping strategies, and even friends who understand.

Hang in there!

Gentle hugs,

Susan (Scribelle)

9

To everyone who responded, and is still responding, I must admit I am overwhelmed by the kindness, love and sweetness of each and every one of you. I expected support but I never could have imagined the support you have all given me just with this post.

You inspire me, that life will go on and though it will be hard, there is hope for better times. Times of acceptance. Times of understanding. Times where I fight and let it know that I will not be beaten.

I am going to be making an appointment with my doctor tomorrow and I am going to talk to him about my pain and see where we can go from here. I'm going to talk about perhaps uping my Gabapentin, starting physical therapy and perhaps seeing a specialist (if my Medicaid covers it) for my fibromyalgia. Also I will be talking to him about exploring whether or not I also have rheumatoid artheritis. The pits in my nails started a few months ago and lately there are new pains and challenges that make me wonder.

Still I will find hope. In knowledge there is power and right now I need to learn everything I can about coping, treating and remedying the changes that are happening in my life.

Again thank you all. I look forward to talking more on here and getting to know each of you.

<3 <3 Much love

10

Sweetie...I'm 58 and I'm terrified too! I feel that I am becoming such a burden. All of our money goes to doctors, pharmacy, hospitals, pain clinics, trips to all of these!!! Very hard to keep your head above water with the financial stress our health puts us in....+.... we're already stressed from our health and trying to figure out what we're going to be capable of...today. Stress tries to ruin our lives. We need to learn de-stressing techniques...your therapist is prolly doing that already.

I've been dealing with fibro for decades plus a handful of other health ailments. The lifestyle we (my family)live is not everyones cup of tea but it works for us and at the heart of all we have to deal with is acceptance.

Now, just because I accept that I have fibro doesn't mean I'm gonna roll over and let it have me...nope, not happening. By accepting the limitations fibro puts on my life I gain control. There are still so many things that I love to do and CAN do if I am patient with myself and use the knowledge that I've gained through fibro to figure my way to and through the things I want to do that I told myself yesterday I can't! I can!

Now sure, its pretty much a given that when I decide I'm gonna tackle a project or an outing, say...berry picking... the next few days I mark as healing days cuz I'll be broken... but...we'll have sweet berries for our cereal or a cobbler and I will have a great sense of satisfaction/accomplishment for not backing out and letting the fibro win. And it always seems not to hurt as much when I know the why/how I got to hurting.

You should never worry about ranting or having a pity party here. We do it daily...and it's awesome! It's like spewing the poison out that holds us down/back. It's very therapeutic and EVERYONE here understands. I am so very glad that you found your way back here and gave us a chance to listen and help. That took some doing sweetie and we're happy for you and proud of you!

My name is Laurel and anytime you see my name 'Northwoods G-Ma' in the members online box...I'm here and will be very happy to help you out in any way I can or to just talk...

We're all here for you, to help you make the most out of your membership here and to hold your hand when it's not such a great day.

Anytime my friend!

Be sweet to yourself today!

PeacenLove~Always~Laurel aka Northwoods G-Ma

11

Dear Calli,

You just rang the gong when you wrote “pitted fingernails”. It took me 7 years to get a solid diagnosis, and that was done by an Assistant Univ Professor-Rheumatologist. Which means he teaches this. He said " Susan, all they had to do to diagnose you, was to look at your pitted fingernails". I have always had those ‘dents/pits’. To me they are ‘normal’. To him they are ‘psoriatic arthritis’. I do not have psoriasis but all my grand kids and great grand kids do. Not having psoriasis made me very hard to diagnose.

Of course I’m not a Physician, so Talking to your Doctor is a wise decision. Getting him to clearly document your records should help you get the care you need.

For me, the best thing for the joint and bone pain is NSAIDs, meaning seething like Tylenol, Motrin, Exederin for Arthritis, if you are NOT already taking a prescription be very careful NOT to exceed the daily recommended dose though

I wish you the very best, please feel free to contact if I can help.

You are on the right path so stat strong.

Sending love and understanding,

SK

12

Susan,

I have started sleeping wrapped up in a heated blanket on low. That way my husband can have the room cool but I'm not freezing and I wake up not feeling stiff. I have also found some pajama bottoms at Walmart that look like regular pants, on clearance so I got 5 pairs. Now I wear my $7 pants with maternity looking expensive tops from J.Jill. haha My husband would die if I actually wore maturnity tops because he hated those when I was pregnant but after seeing the price of the J. Jill tops he might change his mind. haha

And thank you for the paragraph on exercise. My mid back has been hurting really bad today so I went to the gym, at work, and laid on one of those big round things that are the length of your back and then relaxed on the exercise ball. While the pain hasn't gone away it has let up a little. Sometimes we just need a reminder about what is good for us.

Gentle hugs,

Stacey

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Hi Calli,

God Bless you. You aren't alone. I totally get feeling FEAR. When I was first diagnosed with fibro fear and anxiety and feeling like you - that life is fading away was definitely a part of me. I'm not saying that I don't feel it now, but it is better. I have had 3 years to get use to my diagnoses. this is all new for you. Give yourself some time and be comforted by the fact that we are here for you and you are not alone. I mean it - even if you feel this way in your day to day life know that there are people out there who do really understand what you are going through. Know that you are going to get through this initial phase of the diagnoses.

Some people here have recommended Gabapentin. I take Lyrica - it is FDA approved for the treatment of Fibro and it is supposedly an improved version of the gabapentin. It can help. I also take Cymbalta and have had the most pain relief from taking it. it does not take all the pain away, but it brings it down to a more manageable level for me. When you go to your DR ask them about these two drugs.

You may want to find a Rheumatologist. They are specialists in Fibro as well as in RA. Your pain could be fibro and/or it could be RA which causes pain all over and decreased movement as well. I met a young woman a few years younger than you who had RA from the age of 19. She said that gentle Yoga (for people with fibro, RA, and general Arthritis) helped her the most and that she did it every day both to help her stretch and move better as well as to become centered and get her mind "in order". Maybe once you get your pain under some control you could try the yoga. Anything is worth a try.

I truly wish you the best of luck Calli. Thinking of you.