How long does this last?

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Kyyndred
New Member


Date Joined Jul 2018
Total Posts : 12
   Posted 8/3/2018 8:32 AM (GMT -6)   
I know there is no cure for fibro but I hear stories about sleeping for 2 to 5 years and that begs the question, "and then what happened". People just get better in that amount of time? Just what is the average "bad time" of fibro? How long were you disabled (if ever) before you regained something of a life again? What was the most single helpfull thing you did? A new med? Diet? Suppliment? I'm desperate to feel better and deeply grieving the loss of my life at this point and looking for something to look forward to. I'm already on antidepressants, antipsychotics for mental problems in my past. I see a shrink regularly. She gave me cymbalta and allthough it helped the fatigue and pain it was terrible on my stomach and had to quit. The adderal I got to keep me awake (recommended by my rheumatologist) made my mind feel awake and my body jittery but I was still too weak to do anything. Felt like being trapped. Now I'm taking a muscle relaxer to help the pain but it causes fatigue which makes me miserable. I'm interested in all your stories, especially how long you suffered before things got a little better.
Thanks,
Kyyndred

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 8/3/2018 8:46 AM (GMT -6)   
While I do not have experience with Fibro & will leave that to the experts here, I do understand chronic pain all too well. In addition, I posted to you along with some other members in the depression forum about grieving our losses because of health. If you haven’t seen the posts there you may want to take a look later.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17897
   Posted 8/3/2018 11:09 AM (GMT -6)   
Fibromyalgia seems to be a lifelong illness. We will have good days and bad days so it’s important to take one day at a time. We all can handle one day. The biggest problem I see with you is your thinking. You are grieving the loss of your life, you say. You haven’t lost your life. Things have changed but you can learn to help yourself physically as well as mentally. You will learn a lot on this forum...even by reading older threads. There is a wealth of info there. Also, I suggested you read Fibro 101 when you first came on the forum. Have you done that yet? It’s a good start and you will learn plenty there also.

I don’t know where you heard about people sleeping 2-5 years. That’s a first for me and I’ve been a mod on this forum for 15 years and I’ve had fibro for 31years! Sure we tire easily but it’s very important to keep moving. If you sit or lay too much you will be stiff as a board and have more pain. You also will have more fatigue. There is such a thing as too much sleep!

It’s important to move and do some gentle exercise every day. Boy, do I hate the word exercise but it has helped me all of these years. Good forms of gentle exercise are walking, swimming, and yoga. I walk daily. I don’t want to head out the door but then I start looking at the beauty all around me while walking and my attitude lifts. By the time I get home, I have less pain and more energy! I’m ready now to face my day. PLEASE get moving. It’s very important with fibro.

I use ibuprofen with food, Tylenol, vitamin D3, magnesium malate, and a muscle relaxer called Robaxin that has made a significant difference in my pain. I know you said you take a muscle relaxer and, yes, they can make you feel tired. Because of that, when I was prescribed two tablets four times a day, I only took one tablet four times a day. It helped with my pain but didn’t make me groggy. I need to be able to drive my car. As my muscles started relaxing I needed less so I backed down to one tablet three times a day. I now keep a maintenance level of one tablet before breakfast and one before dinner. I have no side effects from Robaxin either. The generic is called methocarbamol. It’s also scored so I could even cut tablets in half and take even less! This drug has been around for decades. I took it nearly 40 years ago for back pain.

Remember...what works for one with fibro doesn’t necessarily work for another. It’s a trial and error type situation. But there are plenty of suggestions on this forum. Do pass everything by your doctor. Don’t self-medicate. That’s not a good idea and let your doctor/s know all supplements you are taking too because sometimes supplements can interact with medications. It’s usually good to take medication with food too, unless noted otherwise. It helps protect the stomach, etc.

There are links in Fibro 101 about the vitamin D3 and magnesium malate supplements so check that out. These have helped quite a few members.

Pace yourself when doing things. Set doable goals daily and when you achieve them you will feel good! Keep a positive attitude also. In Fibro 101 there is a link to how to maintain a positive attitude when you have chronic pain. It’s really very good so do read it.

Do not project yourself in the future. No one knows what the future holds but we sure can conjure up a mess, can’t we! Just focus on today. Get up and get moving. Start out slowly but pretty soon you will see yourself do more and more things. No pity parties are allowed either. I’ve had a few but no one shows up! 😂. It’s a huge waste of energy. Take that energy and do something that will help you.

I was a mess when I developed fibro but I had to keep moving because I had three young children at the time. I just took one day at a time and did the very best I could. It worked out fine. I didn’t let fibro and my other illnesses stop me from doing what I needed to do and some of what I wanted to do. I refused to give power to illnesses. I was going to hold onto the power. I’m glad I did. I have since raised three beautiful children and I even did a lot of traveling. I have done things like snorkeling, parasailing, and even stood on a glacier in the Canadian Rockies! I never could have done these things if I thought that I couldn’t do them! I believe we can do anything we want if we believe it. We might have to work around things because of our illnesses, but we are smart and can figure things out.

For example, six years ago I was diagnosed with Ankylosing Spondylitis. Sacroiliitis along with fibro. This is when I headed to a rheumy. I almost couldn’t walk and needed two canes to take one inch steps! This is when I was given the muscle relaxer and was started back on ibuprofen. I had taken ibuprofen for years but developed ulcers so I had to stop taking it. But my Internist put me on a second medication that protects the stomach from ulcers and it’s worked for six years so far! I worked around the problem. But yet a second problem as facing me. I have a pool and it has only three steps into it. Two are 12 inches high and one is 15 inches high! No way can I do steps like that now with AS and sacroiliitis. So, I headed to Home Depot and bought a bunch of patio stones that are one inch high. I stacked three on each of the three steps. Now I only have to step up six inches to get in and out of my pool! Ahhh...another problem solved. Illnesses will not stop me from doing what I want you you can do this too!

Lastly, make two lists. One list will be all of the negative things in your life and the second list should contain all the positive/blessings in you life. Don’t forget things like the roof over your head, your vision, your hearing, food on the table, family members and of course friends. You will be surprised how much longer your blessing list will be! That will bring a smile to your face. Keep that smile on your face too. It will brighten your spirits!

I hope some of this will help you and spur you on. I think you can have a full and happy life ahead. Just get up, pace yourself, and start living your life.

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

Luvzminis
Veteran Member


Date Joined Apr 2008
Total Posts : 2750
   Posted 8/3/2018 4:45 PM (GMT -6)   
Hi Kyyndred and welcome!

Sherrine as usual has some great ideas and I don't have a lot to add.

Fibro is definitely a day-by-day issue to deal with. Positive thinking is helpful. What helps me the most, personally, is my faith. There are several little things we can do, too, such as make a daily "to do" list and do what you can. It never helps to beat yourself up if you don't do everything. We just take things step by step. Trial and error. What works for one may not for another, so be open to your doctor's suggestions and take it one at a time.

Spiritual (religious) reading and music are helpful to me and relax me. I also tune out stressful things. I get my news online and just read the headlines, not getting bogged down by all the stories.

Getting outside each day helps me--just getting fresh air. I have a small garden and I try to get out there daily. Today I picked some beans and tomatoes and found a few beets. It's a good diversion, as are hobbies, whatever you may enjoy.

Alternating sitting and standing helps me, too. Also, on days my feet bother me, I set the timer and change shoes about every hour (I can get very stiff feet!). Little things like that can make a big difference. I also have a big rubber mat I stand on when I wash my dishes. My heating pad (or sometimes an ice pack or microwavable "bed buddy") are always within reach.

I also try to have things to look forward to, such as parties, if I feel up to them, or even a little shopping in a craft store (where I could get lost for days, LOL!)
turn

Personally, I try to avoid meds whenever I can, though I do take them occasionally (my doctor has okay'd this for me, but check with your own doctor for his/her thoughts on that).

I'm looking forward to my little granddaughter's first birthday party and also a trip to the zoo with her. Sure, there's a chance I may get a flare and have to back out, but my son and D-I-L are well aware of my health issues, so I know there will be other good times with them and little granddaughter soon. But I'll make a good attempt to attend both.

It's fun to try something new, such as learning to quilt or knit, paint with acrylics, etc. My passion is creating dollhouse miniatures. They are so fun!

A pet or two can lift the spirits, too. Even tropical fish in an aquarium!

I guess to sum up, we just do the best we can and give everything our best shot. If we're in a flare and things aren't going well, we just try to relax and do more sedentary work. Give it time and things will change.

Sorry, I'm probably rambling here, but just a few thoughts. I hope you have a great weekend! smile

Post Edited By Moderator (Sherrine) : 8/3/2018 4:40:58 PM (GMT-6)


Kyyndred
New Member


Date Joined Jul 2018
Total Posts : 12
   Posted 8/3/2018 6:28 PM (GMT -6)   
The liittle things is exactly what I am looking for. Thank you. I did read fibro 101, thanks. It was also helpful. My head is still spinning though. Jan 4th 2018 I was a healthy 46 year old woman with a full time job and full time teenagers and workaholic husband and juggling it all with ease. Jan 5th my whole world turned upside down with a cold and extreme fatugue. I lost my job and my income and my independence so yeah, I am throwing a pity party. I appologize. I just want to know how long it's going to be before I can walk from room to room without a rest and make myself a meal when Im hungry. Everybody says it'll get better but no one knows how long it'll take and I just cant wrap my head around that. I was looking forward to a nice pension and 401K and now I'm trying to figure out how to fill out the disability forms. When does this crippling fatigue and body pain get better enough that I can do a hobby or leave my house again?
desperate,
Kyyndred

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17897
   Posted 8/3/2018 7:35 PM (GMT -6)   
I’m guessing but I think you might have something else going on along with fibro. I don’t hear of crippling fatigue like you are describing. I get fatigued but it usually hits me more in the afternoon. Mornings are fine and that’s when I walk and do whatever I plan on doing. In the afternoon I’m more sedentary and that’s usually when I answer email or check the news. I do cook and have no problem with fatigue.

I do understand your dismay. I felt fine and sat down to watch some television with my husband. Then the pain started creeping up my body and within 45 minutes I was in misery. I thought I had rheumatoid arthritis because the pain was symmetrical. This happened two weeks before I turned 40 years old. But as I said, I’ve still had a great life in spite of fibro. You have to search to find what will help you with the pain...and especially your fatigue. Never give up.

If I was having what you are describing, I think I’d get a second opinion. They could be overlooking something. I think I mentioned the thyroid or maybe anemia...things like that.

I wish I could make it all go away or tell you when it would go away but no one knows the future. Try the supplements I mentioned and try to move some. If you are staying in bed or lying on the sofa, that can make you even more fatigued...and more depressed to boot! When I started walking, I could only walk four houses down and had to turn around if I was going to make it back home. I carried a cane with me...just in case. I wasn’t thrilled but I didn’t quit. I went out the next day and was able to go a little further! I now can walk several miles or more. I even walked through Fantasyland at Disney World a few years ago. Boy, was I pooped but I did it. I never, ever thought I could do such a thing when I started walking. Remember...I was using two canes to walk at one point.

So make yourself do things. Pace yourself and you just might surprise yourself if you don’t give up! You have to start somewhere so make tomorrow the first day of the rest of your life. It may be rough going but never give up. Each day may be better and be sure to only take one day at a time. Also, think abou the second opinion I mentioned too. I hope you start feeling better soon. Yes, it can happen.

Do check in and let us know how you are doing. We do care about you.

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) : 8/3/2018 6:47:13 PM (GMT-6)


Chutz
Forum Moderator


Date Joined Jan 2005
Total Posts : 9289
   Posted 8/3/2018 9:55 PM (GMT -6)   
Hi,

Just a note - Chronic Fatigue Syndrome (CFS) seems to go hand in hand with Fibromyalgia. If you have fibro you likely have/or will get CFS, BUT just because you have CFS doesn't mean you'll get fibro. Make sense. This is from years of reading and seeing what's going on with the members of this forum. CFS is a treatable disorder by itself and yes, it can be very debilitating.

Warmly,
Chutz
Fibromyalgia (chronic pain), IDDM (diabetes). Ulcerative Colitis, , Osteoarthritis, Degenerative Disk Disease, Depression, Chronic Fatigue Syndrome, PTSD and others trying to mess up life.
~~~~~
The microwave oven is the consolation prize in our struggle to understand physics. ~Jason Love

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17897
   Posted 8/4/2018 6:42 AM (GMT -6)   
Doctors are starting to think that chronic fatigue syndrome and fibromyalgia could actually be the same illness. They are very similar. They both have fatigue and pain. Both are not fun but the treatment for both is about the same. Here is a link from the Arthritis Foundation about this. Some of this will look very familiar to you.

/www.arthritis.org/living-with-arthritis/tools-resources/expert-q-a/fibromyalgia-questions/chronic-fatigue-syndrome-fibromyalgia.php

This is another interesting article too. It does mention that a lot of exercise ((like going to the gym) can make you worse. I know if I went to the gym they would ge carrying me out on a stretcher. 😂. This is why I stress gentle exercise...like walking, swimming and yoga.

The article also says that ibuprofen doesn’t help with fibro but that has not been my experience. I didn’t start to feel better until I started taking ibuprofen. It was a start for me. But I always take it with food.

Anyway, here is the article.

/www.everydayhealth.com/fibromyalgia/fibromyalgia-and-chronic-fatigue-syndrome.aspx

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) : 8/4/2018 7:19:07 AM (GMT-6)


Lendi
Regular Member


Date Joined Mar 2018
Total Posts : 336
   Posted 8/4/2018 9:35 AM (GMT -6)   
Those are good articles, Sherrine. Thank you for sharing.

If I'm thinking right you're wondering when this will go away or how long it will last. It may never go away, it may get better if you work at using the techniques, it may not. Absolutely no-one can predict how long or if this will every go away. Truthfully, I know you don't want to hear this but it's doubtful that it will just go away. It can get better, though. It's also possible that you're going through a "flair" where the fibro is more active than other times. It's just a time will tell. I do care and hope for the best for you.

I also agree with Sherrine that something else might be happening. It all needs to be checked out including a sleep study. Even if you don't have apnea there are other sleep issues that can cause really bad sleep. Quantity of sleep is important but so is quality. You can sleep 20 hrs of the day but without quality it wouldn't do any good. Check out sleep deprivation. You might be amazed at seeing a lot of your symptoms there.

Mostly, one day at a time, read and get informed, do whatever you can to be pro-active, and remember that there is always hope and likely better days coming your way.
What if trials of this life are Your mercies in disguise.

Laura Short

"Blessings"

FM/CFS, BP, gastritis, diverticulitis, anxiety/PTSD, adult ADD, hypothyroid, brain lesions, sleep apnea that doesn't respond to a c-pap as far as sleepiness/fatigue goes, insomnia and only sleep in stages 1 and 2 and REM with a tiny bit in 3 and 4.

Luvzminis
Veteran Member


Date Joined Apr 2008
Total Posts : 2750
   Posted 8/4/2018 10:09 AM (GMT -6)   
Thinking back (many years), my fibro was definitely at its worst right in the beginning. At that time, I had uncontrollable leg, foot, and toe cramping and could barely stand. I thought surely I'd end up in a wheel chair.

That's not to say from thereon it's been a bed of roses, but we gradually learn how to deal with the symptoms-at-the-moment. I don't know about others, but my fibro constantly "evolves" and moves from area to area. I've become used to dealing with it, and it does help me to realize those symptoms will move on, eventually. It does get more difficult when they decide to hang around for a while, such as my leg issues this past winter. But there is light at the end of the tunnel, and over time, we may even begin to notice a pattern, such as when weather changes.

I also agree with Sherrine that there may be something else going on, and as Chutz mentioned, CFS comes to mind. I was told by a neurologist that I also have a neuro condition but it's as yet non-specific; perhaps mild cerebral palsy, but that was his best guess. I do remember sleeping much more at the start of my fibro, but I gradually slept less and began to move around and it did help.

We seem to need extreme patience with this condition, for sure! As Lendi said, be pro-active and remember there's hope and better days coming (and I still have to remind myself of that during a nasty flare, but I'm learning!). yeah
Pray, hope, and don't worry." St. Padre Pio


"The real things haven't changed. It is still best to be honest and truthful, to make the most of what we have, to be happy with simple pleasures and have courage when things go wrong." Laura Ingalls Wilder

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2229
   Posted 8/5/2018 11:46 AM (GMT -6)   
Hi,

Mine hit worse in my thirties, i had two young kids and thought i might end up in a wheelchair..at times my back muscles would spasm and lock.. and i literally could not move when that happened..

Like sherrine , an anti inflammatory also helps me..one of my physical therapists says, its neuro inflammation that does not show in the blood work..

I have had periods of awful fatigue, but felt like i managed things and raised my kids and some of their friends.. until my d got low one year..these things combined had me in a state..

I got out of that by getting the d levels up.but this year our wheather has been so wet.. i got fatigued and stiff again..so i am fighting my way back out of it yet again..

Do you take magnesium and malic acid, they help some..a generic of corvalen m helps me with fatigue..
I am getting some acupuncture, and massage right now to try and help with the stiffness.
I also always stretched most days which really helps..somehow i got out of that good pattern and its not good, so back to stretching!

Topical pain relievers help me greatly .whatever areas are the strongest pain, you can tamp that down..

Of course heat!

You can get better, but study self help methods , they are trial and error..see what works for you

Lj

kodaska
New Member


Date Joined Aug 2016
Total Posts : 15
   Posted 8/8/2018 2:27 PM (GMT -6)   
Hi, Kyyndred!
I sympathize with you because of all the trouble you are in. I am so sorry not to have to tell you better news than what follows, but at least I will tell you the truth. Your early onset of depression was not on the mental basis but the sign that you are genetically predisposed for dysautonomia (disturbance in functioning of autonomous nervous system with the lack of certain chemical compositions in the body, causing depression), which also causes rheumatoid artritis, restless legs syndrome, anxiety, fatigue, fibromyalgia and so on. I am puzzled why it all came in your case so late after depression, but we are all different. You asked how long will fibro last and how long can the peaceful period last, if any. Also quite individual, including the possibility that fibro goes away and never returns (very rare cases). Is there any light at the end of the tunnel? YES, without any explanation, definitely yes! Just don't give up for a while!
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