Need some help

General
1

I have osteoarthritis and fibromyalgia. I've been told by the PCP and Rheumy that I should exercise. I was doing Zumba prior to this and stopped about a month before starting deep water aerobics. So i've been at this for about a month and I still get the pain and stiffness I did when I did my Zumba class. Meds aren't covering me and getting breakthrough pain. Went back to Rheumy to see what I could take for the breakthrough pain. He tells me Tylenol for breakthrough and cut my workout routine in half. Mind you at the present time i'm only doing 30 minutes running in the pool, trust me no where's near the intensity of the zumba workout.This reaction i'm getting isn't the I haven't worked out in 4 months and i'm just starting out again. I get this every time I work out. Rheumy tells to build up to it as tolerated, PCP tells me this is what's going to be the new norm.

Any of you seeing anything like this?

2

For me everyday is different. My warm water pool shut their doors a few years ago, but in the water I could workout without fail. It is just some days I just did not have the energy to get there and other days I was almost too exhausted to drive 4 miles home. Be careful taking any pain meds as your liver will be effected, you will build a tolerance, and they really will not work for fibro pain. Tylenol will also tear up your stomach.

Focus on your mind. Learn mental relaxation techniques to train your body to forget about the pain. Fibro causes a hyper sensitivity to any pain stimuli. I find just watching a tv show with physical violence causes my body to react. I awoke too early this morning and needed more sleep, but was in pain. While stretched out on my back in the bed I pictured in my mind a white light entering my head and coating my body with warm oil. I pictured the oil touching each part of my body and flowing slowing down my body. I awoke three hours later.

3

I have osteo and FM, too. I would stretch almost everyday and be as stiff and sore each morning, as if I had never streched in my life. I also did not find pain meds beneficial. About 2 1/2 years ago, I had a blood test for food sensitivities or Comprehensive Food Panel where they checked my IgA and IgG levels. I showed that I had a lot of food sensitivities that, by the way, were not picked up on food allergy blood tests that I had had before. So I completely cut out all of the foods that were on my list and my FM pain improved about 90%. I also went to see a really good chiro who used what's called Active Release Therapy or Technique, to help with the low back/sciatic pain. I just started a new fitness program to improve my muscle strength and stamina. It wasn't until I got to the root of my fibro pain that I was able to exercise and not be stiff and sore constantly. So, in my experience, the key was finding out what foods I was sensitive to and cutting them completely out of my diet. By the way, I am a 52 year old male. Good luck!

4

Unfortunately for those of us with fibro there are not many answers. If I go for a long car ride I cannot move for 2 or 3 days after! About the only excercise I can tolerate is shallow water aerobics. I tried deep water and it was too much. I can surprisingly do the whole hour sessions and I think that is because there is stretching along with the workout. I also to combat the pain using a TENS unit and this I do recommend to anyone reading. It is a drug free life saver that really helps. They are inexpensive and effective. I believe I got mine on Amazon for around $20 and when the pain is bad it is my go to for relief.

5

I suspect that none of us feel good either while exercising or after, unlike normals. If you go to www.dailymotion.com and search HeavyHands Panaerobics, you will find a free program you can stream or download even. Dr. Schwartz wrote two books, out of print but selling for nothing online at used places. Heavyhands explains basics, HeavyHands Walking is if you want to walk with program. You don’t reLly need the books. Dr. Schwartz was a genius. I’ve been doing this for thirty years with at times severe fibro and minor arthritis. it is infinitely customizable for an individual. I like it because it does weight and cardio at same time. The best exercise is the one you do and I can do this in my pj’s after breakfast. I hate gyms and am not good in water.

6

For me, building up is the only way to go. It doesn't take long for me to get out of shape, either: stuck in the house for two months with ice, cold and snow has me struggling to do half my regular exercise routine (I walk and hike). I wouldn't think you are at your "new norm" unless this has been going on for a couple of years.

Tylenol for breakthrough pain??? Not a good choice, bad for your liver and stomach!! I take ibruprophen for general pain and if I really get breakthrough pain I cannot tolerate I take half a Tramadol. I always try stretching and hot baths/showers before I resort to pain meds.

Hope this helps.

Gentle HUUGSS, Kimberly

7

Oh, I forgot about diet!!! I have IBS too, I try to get lots of fiber, especially in the form of spinach and other deep green veggies. Spinach in anti-inflammatory too, which helps with the arthritis pain.



Don'tQuitMB said:

About the food situation: I think you are right on. I haven't changed my diet too much but I am certain that I should. Do you have IBS too? I think that would help that. I am pretty good most of the time with that though. It goes in streaks. Nice chatting with you all.
8

I’ve found it is the new norm. I’ve lea when to push thru and just deal with it and when to rest and take ibuprofen. I deal with a lot of issues fibro was just the topper

9

Painfully active is so much better for us!! Yes, I have pain when I exercise. I have pain when I don't. But I feel better overall when I do get at least some exercise every day.

PamelaJenewein said:

From my experience: since 2008 my workouts never "calmed" as far as pain goes. You know that moment when you no longer experience muscle discomfort because your body adapted to the movement.

I did brisk walking, weight lifting and calisthenics for 5 years however, my hips, knees, thighs, calves, upper arms and back muscles were always painful to touch. Between spring and fall I also pushed mowed, gardened, even built new flowerbeds by myself. In fact this chronic pain is what sent me to a doctor and a Fibromyalgia Dx.

In my humble personal opinion, as I workout now, I am beginning to believe that my new norm will be painful exercising/activity no matter how long I do it. So I may as well be painfully active then painfully inactive. *LOL*

Just some background on me: I've been working out since I was 14 and never had issues with pain at this intense level before. Between 14 years and 38, I did more in purposeful activity then was required; walking 3-4 times a day, 120 minutes, or more, of high impact aerobics daily. I had a severe weight problem which lead me to extremes in cutting calories and being active. A practice I no longer perform. :)

10



Kimberly said:

Oh, I forgot about diet!!! I have IBS too, I try to get lots of fiber, especially in the form of spinach and other deep green veggies. Spinach in anti-inflammatory too, which helps with the arthritis pain.



Don'tQuitMB said:

About the food situation: I think you are right on. I haven't changed my diet too much but I am certain that I should. Do you have IBS too? I think that would help that. I am pretty good most of the time with that though. It goes in streaks. Nice chatting with you all.
Is there any hard research regarding monitoring your food and FM. I have been on an allergy diet forever. Ever since I was born. I'll be 57 in July and I just learned how to make eggs for my husband, and he had to show me. WHY because I was never allowed to have them, allergic to them.
I have attempted "eating better" Fruit, Oats, Quinoa etc. Made me uncomfortable and gave me many trips to the bathroom.
11

I can recommend Dr. Kevin Myers at Vanderbilt. He will spend the time to properly diagnose Fibro and rule out other problems.

12

I have OA and fibro. I am a bus driver and nurses aide (private home duty). my life has changed drastically since being diagnosed 11 years ago. I am an R.N., but can no longer work in this capacity. I am unable to stay on my feet longer than an hour at a time. my memory - fibro fog - is horrible now. my pain is constant, but my meds (lyrica, tramadol, Tylenol and aleve) take the edge off. I exercise when able...stationary bike, light hand weights, and elliptical.

I will tell you what has helped me more than anything else. Acceptance of my condition and the limitations that go along with fibro. I think that both of your doctors are right. however, they get an F in presentation!! :) Most doctors do a bad job of explaining what to expect when you have fibro. Most people with fibro have an increase in symptoms as the years progress.

It is important to accept this and learn how to adapt. you could take 10 different fibro patients and find that all 10 have different symptoms at different times, and at different levels of severity. You have to listen to your body. take one day at a time. don't get discouraged if you have a bad day/week/month. understand that this happens to all of us. having a positive attitude is huge!!!!! For example, I make less money now, but I am much happier. I have less stress in my life and t!his has made all the difference in the world.. I have fewer migraines, less anxiety, and less depression. i still have bad days, but i am able to cope with them much better now because i don't have as many stressors.

it is great that you are a part of this website. it really helps to have people who not only understand what you are going through, but also give you help when you need it most. hang in there and keep asking questions. it will give you the validation that you need...and deserve!

13

Have you had x-rays taken recently of your knees? Have your docs mentioned if it's time to have knee surgery? My osteoarthritis started 7 years ago and I've put off the steroid injections which my doc assures me will help. Even though the knee is bone on bone, he'd like to try injections to see how they work. Even though I'm 67 he wants to postpone surgery as long as possible. His theory is that the surgeries last about 20 years, and he hopeful I'll live another 20 years. After having fibromyalgia for 22 years I'm seriously hoping there is a cure for FMS before then. Besides dealing with FMS, osteoarthritis, I'm also on very strong pain medication for crushed nerves in my left foot after an injury. The strong, and I do mean 3 strong pain meds, do NOT touch the pain in my knees or FMS, it does help the crushed nerves immensely. I take 400mg of ibuprofen for my knees when they get bad. I'm not suggesting that you do that I'm just telling you what works for me. Friday will be the first day I get my steroid injections, I'm keeping my fingers crossed. I'll watch for more postings from you and will answer if you send any. Hope I've been of a smidge of help. If you can do exercise in a heated pool, I've been told it's the best exercise for both osteoarthritis and FMS! Best of luck!

14

I want to thank everyone for all the input. You've all shared about yourselves, let me tell you about me. I'm married with a wonderful husband. He's truly my biggest bestest buddy pal in the whole world. When I started with this stuff he read lots of information about FM. He's looking into information pertaining to FM and diet, luckily his sister is a dietitian. I asked her about it and she had said, couldn't hurt but there's not a lot of hard and fast evidence that it would make a difference.

I work as a secretary for a University medical school. Convienent huh??My meds include 1000 of Naproxen a day (used to take Daypro way back when and it was 2400 per day) with up to 6 Tylenol if needed for breakthrough. At night I have nortryptline, tramadol,Naproxen and allergy meds. Gotta watch the steroid shots due to asthma.

I think the source of my frustration is I can't figure out how to set a routine. I have to divide my time between work (which tends to be stressful from time to time, caring for my mother who is 84 and doing all sorts of day to day stuff. It's funny at one point I was an EMT, cared for the house and took care of my mother and worked full time. Now i'm lucky if I last maybe an hour after supper. I feel not so hot most of the time, and when I do feel better I go gang busters because I don't know what tomorrow will bring. I guess I need to learn to be ok with that.

I have recently taken up deep water aerobics, mainly consists of running in a lap pool. Didn't think I would enjoy it as much as I do. When the local swim team is training alongside of the lane i'm working in you kinda get caught up in the energy the kids give off. See the problem there is I get all loose and feeling good then I find out that mother nature has a sense of humor, it's called gravity.

Fibro Fog is rather interesting as well. I have resorted to literally writing EVERYTHING down in a steno pad. When I say everything I mean EVERYTHING. Anywhere I gotta go, anything i'm told to do, I map things out a week in advance. Happy to say it works.

I have gotten used to asking for help, being more interdependent as opposed to being totally dependent. I don't feel like i've been looked down upon for it. But I will admit it's a change.

Ya know, depending on how you look at it. This could be another job opportunity for all of us. My husband has found less and less need to listen to the weather report. Between my mother and I along with our joints, he can generally tell when the weather is changing.

Thanks folks, I look forward to talking with you folks more often.

15
About the food situation: I think you are right on. I haven't changed my diet too much but I am certain that I should. Do you have IBS too? I think that would help that. I am pretty good most of the time with that though. It goes in streaks. Nice chatting with you all.
Is there any hard research regarding monitoring your food and FM. I have been on an allergy diet forever. Ever since I was born. I'll be 57 in July and I just learned how to make eggs for my husband, and he had to show me. WHY because I was never allowed to have them, allergic to them.
I have attempted "eating better" Fruit, Oats, Quinoa etc. Made me uncomfortable and gave me many trips to the bathroom.


emt21902 said:



Kimberly said:

Oh, I forgot about diet!!! I have IBS too, I try to get lots of fiber, especially in the form of spinach and other deep green veggies. Spinach in anti-inflammatory too, which helps with the arthritis pain.



Don'tQuitMB said:

16

I’ve had multiple X-rays on my knees during the last five years and yes they are bone-on-bone! I had the knee injections (series of three over 6 weeks) twice. They worked the first time for nine months, but not the second time. I was told this is very common.

My total knee replacement was done April 2014, at Vanderbilt Medical Center by a surgeon who only does knees. My 83 year old neighbor had the same surgery and surgeon two months later. We both regret having the surgery, but for different reasons.

The pain after the surgery was hellish and I ended up in a nursing home for 30 days for rehab as I couldn’t bend my knee enough to get in our SUV. (My young age of 50ish was quite a topic at the nursing home.) After this I did rehab for another 60 days, for 3 to 2 days per week. It still feels foreign, tight and hurts from fibro, activity and just standing. Some nerves were damaged around the knee and I have no surface feelings on one side. (This is common.) You are told not to kneel on the knee ever, keep weight in check, and come back in 25 years for another replacement. Just getting out of tubs are difficult.

I still need to replace the other knee, but I believe the pain is more fibro than osteoarthritis. During the rehab I was on breakthrough pain narcotic meds while taking another pain med usually reserved for dying cancer patients. It still was the toughest surgery of my life and I’ve had ten! And my neighbor has had to slow down, quit working in the yard as his leg is constantly swollen. I don’t think he will ever be able to recover or rebound.

Good Luck!

17

I can't tell you how much I appreciate all the information you've given me Kitty. I think I may rethink having it done anytime soon. Perhaps my Dr. (who I trust to the moon and back) has a clue that those of us with fibromyalgia have more difficulty getting through surgeries. Because of your wonderful information I'll carefully weight the plus's and minus's of this surgery at soon, 68 yrs of age. I can't thank you enough for your wonderful comments. I was told by another friend that is an RN who had knee surgery that exercising daily on an inside bike was mandatory by her Dr. She is about my age and had hip surgery done also. She said the hip surgery was a "piece of cake" compared to the knee surgery. Knee surgery's seems to be much more difficult. Thanks again Kitty, I really do appreciate your comments.

18

I was a runner before fibro…haven't' found anything that covers cardio plus helping my fibro. In fact exercising attacks me the next day…I'm currently trying a home recumbent bike…I journal the program and timing. I don't feel any better but at least I am exercising my heart…it's totally frustrating not to feel great benefits from exercise instead of more pain a couple of days later. Let's keep talking.

19

I’m also looking for like people. My sister doesn’t get it she said if your joints hurt do arm exercise. I’m trying to get to the point of how to accept this is my life. My counselor wants me to stop work but I’m fighting with myself on the guilt.



PamelaJenewein said:

Wdumont: WOW! You hit the nail on the head.

Your comment, “Most doctors do a bad job of explaining what to expect when you have fibro.” Is very true. No matter what Dx I walk away with, I’m stuck having to gleam information on it by myself. I went through “years of enlightenment” (research) with Polycystic Ovarian Syndrome, and now it’s the same course of action with FM. Again, you are correct in that I must accept and adapt so I can remain a viable person. The journey has been hard, and quite emotional too, but I’m getting closer and closer to acceptance.

As for adapting, well… I use to work for start-up companies as an Admin Asst to numerous people; engineers, VPs, CEOs, and even the janitorial department. The hours were long, the pay not equal to my skills and commitment. When perimenopause, then hypothyroidism knocked me to my knees, I reinvented myself into a nut farmer. Its just me and hubby so no multiple personalities to manage daily, its in my back yard so no 1 1/2 hour commute in blinding snow, and the local market is open for nuts as my state is not a major grower.

Being a farmer is really conducive for someone like me, with unscheduled downtimes. The nuts and trees (bushes) are waiting for me when I can get to them, even 3 days later. I’m also thinking of selling herbal teas too, locally of course.

For me the bottom line is this, I must be around like people, because the others are too discouraging and overly critical. I don’t need this kind of negativity or shortsightedness. Why I searched for forums such as this one.

Thanks for your words of wisdom… they are inspiring.

20



Marty said:

I was a runner before fibro…haven't' found anything that covers cardio plus helping my fibro. In fact exercising attacks me the next day…I'm currently trying a home recumbent bike…I journal the program and timing. I don't feel any better but at least I am exercising my heart…it's totally frustrating not to feel great benefits from exercise instead of more pain a couple of days later. Let's keep talking.