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AKMamaBear
Regular Member


Date Joined Jul 2010
Total Posts : 35
   Posted 7/8/2010 10:03 AM (GMT -7)   
Hello, and thank you so very much for being here, for having this forum, and for letting me know I'm not as alone as I feel.  For the past 18 months I've been trying, without much success, to cope with the idea that the second half of my life will be spent in this much pain.  And while I'm no stranger to pain, (quite to the contrary) this wasn't what I expected, as I believed I'd finally earned the right to enjoy life to its fullest.  I'd worked hard, raised three children; mostly on my own, kept my nose to the grindstone, did the best I could with what I had, and I just knew that one day I'd be able to pull up a chair and sit in the sun....and then it all changed, virtuely overnight.
 
When the pain began to linger longer than I could manage, I used to make up excuses, even to myself.  When it got to be too much, I would hide in the bathroom and cry into a rolled up towel so my husband wouldn't hear me.  I did this for nearly two years.  On a routine visit, I explained to my doctor that I thought I was going to lose my mind with this much pain and that's when the tests began.  Tests and more tests and more tests.  Anyway, you all know how that story ends.  Since March, 2009 I've had just about every type of pain medication that can be prescribed, prescribed.   What we've found is that I'm hyper-sensitive to most medications; it's that or I find myself having to deal with the side-effects of the medication, an unpleasant (to say the least) situation at best.  Even the lowest dose of, let's say Cymbalta, will leave me feeling like a world-class zoombie...I'm ready for my close-up Mr. DeMille.  Lyrica or its counterparts will put me on my fanny faster than I can count to ten and let me tell you, I don't care if the house is on fire around me, I'm NOT moving; as I simply don't care.  Recently Tramadol (50mg/4x's daily) was showing signs of working but then I had developed every single side-effect it offered but when my heart palpatations went from 2 a week to 10 an hour, she took me off the medication. 
 
Three weeks ago I went to see the doctor, as I'd just finished my 12 week regimen of Encort EC, the treatment for my collagenous colitis, and I needed to talk with her about the terrible pain in my feet that had been growing increasing worse over the past few weeks prior.  As I sat watching her go over the neurologists notes, I wish I could tell you I stayed strong, kept my tears in check, but I didn't.  Instead they fell as if it were raining in her office.  All I could do was apologize; it's what I do.  Lately, it's all I do.
 
I've always believed I was strong.  Not just physically strong, but mentally and emotionally as well.  Crying was something I saved for a good movie, or, well, you know what I mean.  Now I cry every day. 
Living in Alaska isn't for the faint-hearted, but I call it home.  And when the snow melts, I can't wait to put on my get-dirty clothes and go outside.  I used to be able to work in my yard for 6-8 hours easy; now an hour, if I'm having a good day.  Oh, and I never, ever had to ask my husband for help with anything, and that was just fine with him because he doesn't like yardwork, which was fine with me, because I do.  Now, and yes, there are tears in my eyes just typing this, I have to wait and ask him for a great deal of help, which he offers up with a smile, and yes, he does a good job, but I know he'd rather be doing something else.  Did I mention he doesn't like yardwork?  I'm rambling aren't I...
 
Anyway, I thought it was about time I quit trying to do this by myself.  It doesn't seem to be working all that well.  So, I'm fairly certain I've come to the right place.  And right now what I need the most is the knowledge that I have more than three choices ahead of me.  In case you're the least bit interested, I've been under the impression my only choices were pain, drugs, and screaming. 
 
Thank you so much for taking the time out of your day to read these words of mine.
 
In Earnest,
AKMamaBear
 

Breathe in, breathe out...repeat
 
 
Fibromyalgia, collagenous colitis, osteorthritis, peripheral neuropathy, moderate spinal stenosis (C3-C6) carpal tunnel, sleep apnea
 
Current Medications: Premarin 0.625mg, Oxycodone 10mg, Hydrocodine 10-325mg, Topamax 75mg, Tricor 145mg
 
Other: Omega 3 Fish Oil, Cinnamon, Calcium/Magnesium, Vitamin D, Glucosamine Hydrochloride


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 7/8/2010 10:52 AM (GMT -7)   
Hi AKMamaBear, welcome to the fibro family. We truly understand the ups and downs
of living with fibro, that is why this forum is so great.

It is especially hard giving up a life as we once knew it. I went through a grieving
process at first. I had always been an active woman enjoying many outdoor sports
and it was difficult not to play tennis, golf or do rugged hiking with my husband. I have
since found other outdoor activities to enjoy. Living with a chronic illness is a challenge
but I have found that life can still be enjoyable. It can be frustrating at times but it
is easier when I try to put a positive spin on things. My motto...one day at a time, it
is alot easier to deal with.

I make it a point to do relaxation therapy daily, deep breathing exercises along with
meditation. Exercising is a must, I'm a walker and found it alieviates stress and gets
my muscles moving. Heat is a fibromites friend...microwave rice pads work great.

My hubby and I share yardwork...he mows the grass...I take care of the garden, shrubs and bushes. The trick is trying to pace yourself. Many times I have overdone
and will end up with a flare. Soaking in a hot bath after yard work is a must for me.

I'm glad you have joined us. You will find people here who do understand and care!
Take time to checkout fibro 101, second thread page one, you'll find good info.

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 7/8/2010 11:05 AM (GMT -7)   
Hi, AKMamaBear, and welcome!  I'm so glad you found us and joined in.  Nope, fibromyalgia isn't for sissies.  You will find that fibromites are mighty strong people...you included! 
 
I haven't gone the heavy meds route.  I've had fibro for 22 years and have managed to control the pain using ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements and vitamin D3 supplements.  I was getting worse but then I found out about malic acid/magnesium and also vitamin D3 and these have helped me a lot. 
 
I live in Florida but yet I am deficient in vitamin D!  So, your living in Alaska could mean that you are deficient, too.  A vitamin D deficiency can cause more pain.  So can a deficiency in malic acid (found in apples) and magnesium.  I take 5,200 IU a day right now.  Have your doctor check that out.  It's checked through blood work.
 
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good info about fibro and you will learn a lot.  There are links about these supplements there, too. 
 
You do need to keep moving.  I know you don't feel like it but it does help with pain.  The more you sit and lay with fibro you will be stiff as a board and in more pain.  I know I'm in the most pain in the day when I first get out of bed.  You want gentle exercises.  I walk and swim as my exercises.  Walking is wonderful and you can get a walking in place video that you can use when your weather is bad.  I know I feel better after my morning walk and have more energy, too.  That will keep  you motivated to keep it up.
 
I have lived a full and enjoyable life in spite of fibro.  I've done a lot of traveling and doing thing I never thought I could.  I refuse to allow this illness to stop my life.  Instead, I find ways to work around the fibro to do the things I want to do.  You can, too, and we are here to help you. 
 
You have come to the right place.  We have wonderful members that love to help one another and, as a bonus, we really do care about each other too.  I'm so happy you are here and I hope to hear more from you soon.
 
Sherrine   
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


sotiredoffibro
Veteran Member


Date Joined May 2010
Total Posts : 1556
   Posted 7/8/2010 11:05 AM (GMT -7)   
Hi MamaBear. welcome to the boards and rest assured you are not alone in this mess we call fibro. To me you sound like a very strong person. I know what it is like to cry from the pain and the frustration of this disease. One of my favorite mottos is One Day at a Time.

I know how frustrating it can be to have to ask for help, but allow yourself the knowledge that by not asking for help right away it is going to make things worse for you in the long run. I hate having to ask for help but have realized there are some things I just cant do anymore. Mowing lawn or shoveling snow is going to land me in total pain for many days so I have come to accept that and I dont do it. I will sweep the snow if it is light enough but if I have to I will hire someone to shovel it.

I am glad that your husband is supportive of you, and as long as he isnt complaining dont beat yourself up over it. My husband has MS and so it is hard for him to help me but he tries to do the heavy lifting when he can.

There are a lot of wonderful people on this board and I have found it to be a great comfort. Once again welcome.
Gentle Hugs
Shirley
DX: Fibro, Gerds, COPD, Osteoarthritis, Osteoporosis, High Blood Pressure, and Depression.
When I get where Im going dont cry for me down here. (Brad Paisley & Dolly Parton)


upbeat
Regular Member


Date Joined May 2009
Total Posts : 240
   Posted 7/8/2010 2:25 PM (GMT -7)   
Welcome to the board - this is a great place for support! I have only had fibro for six years, before that I could do everything without asking for help. Yard work, painting, cleaning! It is hard to get used to asking for help, but it is worth it to keep out of a flare.

I hope you can find something to help with your pain. Your life will be different, but that doesn't mean it can't be enjoyable!

Glad you joined us.
Fibro dx 2004, RLS, raynauds
Ultracet, Robaxin, Neurontin, Lidoderm patch, Vit D, CoQ10, Mag


yo-yo
Regular Member


Date Joined Aug 2009
Total Posts : 159
   Posted 7/8/2010 2:48 PM (GMT -7)   
Just wanted to make a suggestion.  Since you love to work in your yard but can now only do about an hours worth of work, why not take the opportunity this summer to re-vamp your yard to something more managable?  When my 5 children grew up and moved out, my husband and I revamped our year.  He is allergic to grass, so he can't mow lawns and I have fibro and don't have the energy.  With the help of our children, we removed the grass and replaced it with barkdust, river rock, numerous bushes (both flowering and evergreen) and laid beautiful brick paths thruout.  With lots of pre-planning and lots of work it came out beautifully.  Now we have little work, mainly topping the bark every year or two.  I also like hanging baskets  and have several in the summer which gives more color and a sense of satisfaction in doing "some" outside work. 
 
Having a handle on how much work you have and how much you really are capable of handling with fibro can really help you have a feeling of accomplishment and enjoyment.
 
Yo-yo 

myjoy
Veteran Member


Date Joined Feb 2009
Total Posts : 686
   Posted 7/8/2010 2:52 PM (GMT -7)   
Hi MamaBear! I can tell that you will be great to have around here. Your writing ability is fabulous.

I'm so sorry you are going through all this pain. Fibro is tough to have.....and everyone's troubles are different....but many things are the same too. I could not take Cymbalta either, and the withdrawals were awful. What I do take for my fibro is Nabumatone (Relafen) and hydrocodone. I do not take the hydrocodone every day though. My liver enzymes are elevated right now, so who knows how much longer I'll be taking the Nabumatone. I see my internist tomorrow morning.

Anyway.......sorry to go on about my stuff. I guess we all have lots to discuss.

Husbands are good for helping out and, like you, I have a good and helpful one. I used to scrub my floors on hands and knees and all that. Now he does the scrubbing and the vacuuming. Please don't feel badly for having to give up some things like that. It is not your fault.

Hey, we will chat more later...............glad you came here.
DX fibromyalgia 2007, osteoarthritis, obsessive-compulsive disorder OCD, depression, anxiety, sleep apnea, hysterectomy.

fluoxetine (prozac), abilify, trazodone, lorazepam, nabumetone, hydrocodone, c-pap machine.


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40595
   Posted 7/8/2010 3:39 PM (GMT -7)   
Hi AKMammabear,

Welcome to the HealingWell Fibromyalgia forum. I am so happy that you have joined us here. You have come to a good place where all of the members are wonderful. So understanding and compassionate.

Try to keep a good outlook on life. Yes it is going to be different, and you aren't going to be able to do a lot of the things that you use to. But you can still be happy. One of the important things is to pace yourself. You will find that on a good day, you want to do it all. Well, don't!!! Just do a little and then rest. Then do a little more. Plan on things taking longer to do and make allowances for that. And most of all, Don't feel guilty about it. You feel the same at times, so you think you can do the same. And when you can't, then we have a tendancy to feel guilty about it. But that is one of the worst things, because then we tend to feel sorry for ourselves and we sit there and have a pity party. We have all done it. Know that we have no control over this disorder, so we have to take it as it comes, one day at a time.

Do some fun things for yourself too. We deserve that. We can't help what we have. We are only human.

Take care, best wishes.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 7/8/2010 3:45 PM (GMT -7)   
Hi, MamaBear,

Welcome! This really is a great place. We help eachother get through pain, fatigue, frustration, and fear because we can really relate to eachother. Then, there are the "fibrofog" stories for comic relief....I'm sure you probably have some, too. Laughter is mighty powerful medicine, and we need it for the long haul.

I've had this weird condition for over 20 years hardcore, but I think the beginnings were there way back. Like you, I hate to ask for help, as in, "Would you carry that empty cooler out to the garage for me?" - but what else can you do?

Achey
   Fibromyalgia, possible Meniere's, elevated liver enzymes, skin grafting on back, arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraine headaches, tachycardia, skin cancer surgeries on face
    Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
 
This too shall pass....


Sheila1366
Regular Member


Date Joined Aug 2005
Total Posts : 384
   Posted 7/8/2010 5:05 PM (GMT -7)   
Welcome.

It is hard to except the fact that we will live with this illness. I often wonder what life will be like for me in 10 years cause now it is pretty bad. I just take each day at a time. Eventually I stopped crying. Just do the best you can everyday, be honest with your husband and ask for help when you need it and enjoy every moment you can.

I hope that you feel better soon. I know it is hard.
Fibromyalgia,arthritis,raynauds syndrome,gastroparesis,IBS,depression,severe costochondritis
 
God and Family is my life.


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 7/8/2010 10:16 PM (GMT -7)   
Welcome MamaBear!

I do love your name especially since you're from a state famous for wondrous bears! You write beautifully and give us a true picture of what you life is like. It makes me feel closer knowing that others do have the same feelings that I do. I use my pillow for crying but I guess it would be easier to launder a towel...lol

This is a wonderful family here and you will learn so much from others. I know it's improved my quality of life just having everyone here beside me. I hope the same for you.

Warmest Hugs,
Chutz
If you're going through hell, keep going.

Winston Churchill

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


Lana Bear
Regular Member


Date Joined Jul 2010
Total Posts : 25
   Posted 7/9/2010 4:36 AM (GMT -7)   
Hi mamabear,

Welcome to the forum. I am new here myself and still waiting on a diagnosis. Everyone here is very supportive. I enjoy yard work too and it's hard not to be able to do it yourself. Over the last week, I've had to ask my husband for help with housework. It seems a little ridiculous since I'm laid off right now and not working a full time job. I do feel guilty since my husband does work a full time job.

I have to agree with pacing yourself. I find this to be very true. I can over do it and be shot for a day or two. That isn't helping anyone. We have to remain positive and know we aren't alone. This forum is very supportive so I'm glad that you are here.

Southernlady
Veteran Member


Date Joined Jun 2008
Total Posts : 844
   Posted 7/9/2010 7:02 AM (GMT -7)   
Welcome Mamabear,
 
Sorry to hear about your pain, but I'm glad you found us.  It's a wonderful place of sharing and caring.  I found it 2 years ago and I've met wonderful friends in those 2 years.
 
I can't say things will get better but I know from experience you will learn to cope with fibro.  None of us have exactly the same symptoms but we all share in the pain and fatique.
 
The only way I can cope, is by taking one day at a time.  Really that's all any of us can do.
 
I know things will get better in the days to come.  Keep in touch.  We are all looking forward to hearing from you more.
 
God Bless!
Shannon
Of all the things that I have lost, I miss my mind the most!!!!


bridget10
Regular Member


Date Joined May 2010
Total Posts : 200
   Posted 7/9/2010 12:00 PM (GMT -7)   
Hi and Welcome! I am new as well and waiting on a diagnosis, but I feel comfortable here because I have chronic pain like everyone else here. i appreciated reading your honest feelings and experiences. It sounds like you have a wonderful husband.

Like others, I feel guilty asking my husband to do things. He meets the criteria for Fibro as well and some days is in more pain than I am. So it gets pretty frustrating for both of us! And he doesn't like to do yardwork either, so I feel your pain. But he is allergic to grass, so that is understandable.

I hope you find something that works for you to help with the pain. I know from what i read there seems to be many natural supplements that could help.

Take care!
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