The original version of this page can be found at : http://www.healingwell.com/community/default.aspx?f=24&m=3821681
Posted By : Sungirl1 - 4/1/2017 2:47 PM
This has totally changed my life and I am sick of it. I wake up every day thinking what new pain will I have today or when it is time to go to bed how many times will I wake up and stare at the ceiling. How do you tell the difference between fibro. and arthritis? I am sick of having to tell people of this new thing I have and they look at me like they don't believe it can cause such pain or discomfort in doing some things. i.e. sitting or standing for long periods of time. I am taking Gabapentin as needed. It helps but doesn't make the issue go away. The last 2 weeks have been awful. I just cannot imagine this is how my life is to be from now on. I am healthy yet cannot do things like I used to do because of this mess. I am quite irritable at this moment and needed to vent. I get sick of saying I don't think I can right now....and if one more person tells me I need to go the dr., I think I'll scream. There's nothing they can do f/ this. I stretch, exercise, eat right, do fun things, but it is STILL there! I hate it. I would give anything to be able to wake up as I used to do and get dressed without having to stretch to be able to move well without hurting. I'd give anything to wake up and not hurt and feel normal. I'd give anything to not have to tell someone, "I can't or no." It's funny now, but I got so irritated and to the boiling point (before coming to write all this), I threw a cup of water. I did try to aim at the sink...lol.
Seriously, I am so depressed. I've tried taking antidepressants but they wreak havoc on my stomach. I am grateful I can tolerate Gabapentin. Cymbalta sent me into another world and I cannot handle the side effects.
Thanks all for listening.

Posted By : puppylover - 4/1/2017 5:03 PM
Sun girl, I am sorry you are feeling so bad right now. I have arthritis pretty bad along with the fibro. I have always been very active but have had to slow down a little since I had total knee replacement last fall. Then the arthritis hit my feet. I have always been a walker for exercise and a swing dancer for fun. So this did depress me for a while. But I tried several different things and my feet have improved a little. I am still in pain most of the time but I try to kind of mentally push it away. I am back to walking my dogs most days and even got on the bicycle a few times. The sunny weather where I live helps I think.

Also, after a check up my doctor put me on 50000 units of vit D twice a week. I really think it has made me feel a liittle better. I am also anemic which my oncologist is going to discuss with me in a few weeks.

It does sound like you are doing the right things and I know what you mean about being told to go to the doctor. Have you had your vit D checked? Just a thought. I also take malic acid.

Good luck! And I have thrown a few things in anger over the years.
Puppylover
And on the eighth day God created Golden Retrievers.

Post Edited (puppylover) : 4/1/2017 5:56:15 PM (GMT-6)


Posted By : Sherrine - 4/1/2017 5:28 PM
Well, where do I begin??? You really need to stop thinking about fibro all of the time. That magnifies you pain because of stress and puts the pain in the forefront of your thinking. This can cause depression. You essentially are letting fibromyalgia rule your life and you don't have to let it do his to you! You can choose the way you look at things...either positively and hopeful, or negative and totally miserable. Right now you chose the latter choice. But I hope I can help you reverse this thinking..

When you wake up in the morning, smile and stretch and get out of bed. Be thankful that you can walk! Start thinking of some goals you would like to accomplish this day. Get something nutritious to eat and perhaps go for a walk...take your dog is you have one. Yeah, I know you don't feel like walking but you will have more energy and less pain when you get back home! Now you are ready for some goals.

Pick goals you feel you can accomplish. If you have a room that is a disaster, decide to clean one corner of it. You can do the rest the next few days. (I have to do my walk in closets.). Always pace yourself and give yourself pats on the back for what you accomplish. This will help to make you happier. When you look back on your day and see what you have done, you will be happy.

I highly suggest that you not talk about illness. I don't talk about my health issues. People don't understand unless they have the same problems. They try to help but that can get frustrating for them as well as for you. Just go out with friends and family and enjoy their company. They will enjoy your company more too if you don't talk about illness. I have found that people pull away if I'm constantly talking about how I feel.

You say you are healthy except for fibro and that is truly fantastic! I wish I could say that. I have a list of health problems as long as my arm but you know what? I still have had a really good life in spite of them. It's all because I have a positive outlook on life. You can do this too. It's a choice.

I was very happy to hear you say that you do fun things! I try to do fun things everyday. I'll putter around in the garden, play games on my computer, or maybe call a friend I haven't spoken to in a while. I love going out to lunch with friends and do this nearly every week.

You don't have to tell someone you can't do something or no. Try everything and don't assume you can't do things with fibro. Again, you would be letting fibromyalgia run your life! I always try everything and rarely do I have that much difficulty. I surprise myself all of the time. A few years ago my son came for a visit for his birthday. He wanted to go to DisneyWorld for his birthday...Fantasyland to be exact. This sure wasn't something I planned on but I wanted to do what he wanted on his birthday. We got to Orlando at 9 AM. As we were entering the park there was a section with wheelchairs in it. As we passed, my son asked me if I wanted one. I said no even though I knew they would be all gone shortly. I walked all though the park. Rode rides including the Madhatter's Tea Cup ride and my son and I were in the front log for the 55 foot drop on Splash Mountain! What a blast I had! I did sit on a bench a couple of times for just a few minutes and also sat for lunch. Yep! My feet and legs ached and my varicose veins on one leg were burning but I kept going. We left the park at 6 PM and I was soooo happy to finally sit in the car for our hour ride back home. I ached but was smiling from ear to ear! I did it! That gives me bragging rights now...not to mention fabulous memories.

Now...get ready to scream. If you are having excessive pain or seem to be getting worse, I suggest to see a ~gasp~ Rheumatologist to have other things ruled out. 😊 You can have arthritis and fibro. You can have lupus or Lyme disease and fibro. A rheumy could really help you if anything like that is going on. I was put on a ibuprofen for ankylosing spondylitis plus a muscle relaxer that has made a significant difference in my pain levels. Remember...not everything is caused by fibro.

Like Puppylover, I too take vitamin D3 and magnesium malate. These do help with pain. She also gave you some good advice and food for thought. And, ladies, I have never thrown something because of Fibro but I sure have punched many pillows out of anger and frustration. I also have found a good cry in the shower helps release the tension which helps with pain. I would tell my family I got soap in my eyes. 😉. We all do understand what you are going through. But you can get in control and live a full and enjoyable life in spite of Fibro..

I hope some of this has helped you. Do read, in Fibro 101, the link about how to maintain a positive attitude when you have chronic pain. It's very good. Also make a list of all of your blessings. Don't forget things like walking, seeing, hearing, your family, the roof over your head, etc. Then make a list of the negative things in your life. I know your list of blessing will be far longer.

I hope you do start to feel better and start enjoying life. It's pretty wonderful.

Sherrine


Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 4/1/2017 6:19:54 PM (GMT-6)


Posted By : straydog - 4/1/2017 7:02 PM
SunGirl, I normally do not post in this forum, however, the title of your post caught my attention. I read your post & can understand your frustration. I do hope that you will read Sherrine's post several times & let it sink in & think about what she said.

I am almost 64 yrs old & have several chronic illnesses. Probably one of the worst things I deal with on a daily basis is chronic pain. It has been my friend going on 30 yrs. I have an implanted pain pump, first one implanted in 2005 & the 2nd one 2013. My pump stopped working about 18 months ago. Recently I went through a horrible time with the pain, actually for 4 long months. During those 4 months every morning when I woke up while trying to get out of bed I moaned & groaned to myself & had some really negative thoughts. Finally one morning the light came on for me. Even though I felt horrible, I realized I was setting myself for the day with my own crappy thoughts. And worst of all, I know better than to do this. I have done every type of treatment coming down the pike & know the psychological effect of what chronic pain can do if I allow it. So, I decided to stop this way of thinking every morning. I was sabotaging myself & sure I was having crappy days. Don't misunderstand, my days are not perfect by a long shot. At least I am not setting myself up for a long horrible day. Do not let Fibro define who you really are.

You mentioned taking Gabapentin as needed. I am not sure why a dr would rx it this way. Gabapentin is not a medication to use PRN. Dosing starts at 300mg the 1st day, then ramped up to get to the therapeutic level needed. For it to work on the CNS, a steady serum level is needed. I am very familiar with it & was very surprised to read you take it PRN. Yes, some get some side effects, however, those dissipate in a week or two. This is probably why you are not getting any relief with it.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 4/1/2017 7:12:16 PM (GMT-6)


Posted By : Ljm2014 - 4/2/2017 5:53 PM
We all have bad days and health issues can overwhelm us at times.

We just gotta get up the next day and hope it's a better day.

The sun was shining here today , so that's always a better day..and I got my vitamin d the old fashioned way..of course I also took it as supplement.

When my vit d was low..my fibromyalgia was so much worse..but it was the d not the fibro causing a lot of the issues..

Hope tomorrow is better

Lj

Posted By : SheilaRose - 4/6/2017 1:15 PM
I am saddened when I read about how depressed someone gets, it's because I understand. My 86 year old mother has fibro, my two sisters and now I've been diagnosed with Fibromyalgia. I also have volvodynia (which is much worse than the muscle pain, spasms, headaches, etc.) So you need to find what works for you. What works for me is constant research on my symptoms & finding new & better ways to control my pain. I turned down Dr. meds because I had very bad results & have chosen to go homeopathic/holistic. This works very well (NOT out of pain, don't get me wrong) but much better. My sister uses essential oils, I prefer herbs and STRICT DIET. There are certain food to AVOID at all cost. I'm doing so much better after reading dozens of books, following forums like this one and feel so much more knowledgable as well. Take all this to heart there is a lot of great advice here and find what works for you! Sheila Rose

Posted By : Lizzy55 - 5/20/2017 6:28 AM
Sungirl
OMG can I relate to your pain and state of mind!

People will tell you all kinds of ways to cope, drugs to take, etc. but I found in my quest that you truly have to grieve -- sounds weird but it is not. I had to go through the grieving process for my old life. It wasn't overnight but once I was through it I was able to live a much better life.
Eventually you come to acceptance. It can really happen.

How? Through some good books, yoga and meditation. Which keep you from dwelling on,thinking about, and talking about your pain. It's not helpful-- I know from experience. And the thing is-- no one can truly understand. And after a while they don't want to.

Simplify your life. Get rid of stuff and obligations that are weighing on you. Complication causes stress and stress causes pain.

It's ok to tell your close friends and family why you may have to cancel plans. Explain it once. My golf girls know if I cancel I don't feel good and it's ok. I don't have to explain it. Likewise for my family.

Do the gentle yoga first. Utube is great if you can't go to class. But class is even better. Yoga works on the mind,the body and the spirit. It has saved my life.

Meditation is something I always said poo on! But the way it calms your body and helps your mind detach from constantly thinking about your pain is overwhelming. Utube again has guided meditations. Lay on the floor and listen.

Books-- another thing I said poo too years ago-- but a NP that I see at the pain clinic suggested a couple and I thought what could I have to lose? So what do you have to lose?

Full Catastrophe Living
Who Says You Can't -- You Do
Essential-- ( a book that has essays about the important things in life)

I know that you are saying the same thing I said when people gave me this kind of advice! Haha what a nut! This stuff will never work!

I've been there and I get it. In 10 years I've been on every drug known to mankind for fibro. I've also been on large amounts of opioids and I've
Formally voiced my thoughts of just ending things to my husband. But I haven't felt that way in a long long time.

Ok-- I've said my piece. I encourage you to try one of these things on a consistent basis and think about the things Sherrine said because they are great suggestions.

Let the grieving process move on and embrace a new life. Live with intention in whatever you do today. You have only so many breaths to take in this lifetime-- you can make them enjoyable.

Oh ya and heat is your friend!!! Big heating pads! Wrap up and relax!

Many good wishes.
Namaste

Post Edited (Lizzy55) : 5/20/2017 6:41:48 AM (GMT-6)


Posted By : Lilianna Rose - 5/26/2017 8:57 PM
Hi Sungirl1,

I'm really sorry that you feel like this. I've been there and sometimes my thoughts still start to go there, but this has been improving a lot for me lately as I have started a new treatment over the last few months - Acceptance & Commitment Therapy (ACT). I am seeing a clinical psychologist for a few different things, one of which is learning to accept my chronic conditions and get on with life and do what I still can do. I cannot recommend ACT highly enough for this. I advise that you tell your doctor how you feel and ask for a referral to a clinical psychologist.

All the best,
Lilianna
Fibromyalgia, Chronic Fatigue Syndrome, Celiac Disease, Polycystic Ovarian Syndrome, Post-traumatic Stress Disorder, Anxiety, Depression (suspect Bipolar Type II), GERD, Chronic Tonsillitis, Chronic Sinusitis, Multiple Chemical Sensitivity, Multiple Intolerances, Allergic Rhinitis, Lymphocytic Esophagitus, Irritable Bowel Syndrome, Migraines, Scoliosis, Restless Legs Syndrome, Hypotension, etc.

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer