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LISAMM

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Hi everyone,

My husband was diagnosed several years ago with fibromyalgia. When I meet him I didn't really understand what it was and in the last couple years have done a fair amount of research on the subject. However, I am finding out that I can read all the research in the world and it won't help me learn how to help him. A few months ago he was also diagnosed with heart failure. The doctors don't know why his heart is failing, but it is. He has been put on a lot of medication, we have radically changed out diet, and he is supposed to begin doing cardio exercise. That's a big problem when he is in pain all the time. I have been trying to help him, but after a badly failed yoga experiment last night I realized that I really don't understand what he is going through with having pain all the time and he isn't good at explaining it to me. So I want to reach out to others to try to get a better understanding of what he is going through and ideas for ways I can help him, and he can help himself. He is extremely frustrated because he feels the doctors don't really care, they just tell him to exercise, and I know how important it is for him to start exercising for his heart, but where do we start? Any advise would be greatly appreciated. Thanks!
 

Ruralchick

Senior member
Joined
May 2, 2014
Messages
325
Reason
DX FIBRO
Diagnosis
09/2013
Country
US
State
AZ
LisaMM, I feel your concern--um, desperation. Exercising is very difficult but a slow start is a start! I was told just 10-15 minutes twice a day walking is a good start, or 15 min. on an exercise bike, working up to 20 min. At the time it may hurt some but afterwards he can use a hot bath/shower or heating pad. I find massage really helps as does Chiropractic to keep some of the pain down. I use a spray; Stopain, when my legs get bad. I spray it on 2-3 times, letting it dry a few min. in between. You can get it at Walmart or Walgreens.

He may find it real helpful to seek counseling from a person who works with chronic pain issues. If he cannot trust one, find another.

You may have better luck with Tai Chi rather than Yoga. We have to move, even when it hurts, just set limits and goals.
At my chiro clinic they also have a fibro program that is all encompassing; PT, nutritionist, cognitive behavior,etc. perhaps you can find one in your area.

I hope something in this helps.
 

LISAMM

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Messages
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00/0000
Country
US
State
MN
Thanks so much for your reply Ruralchick. It's been a real bad week and I am appreciating anyone talking to me who understands. I have purchased a Tai Chi video, one that I read they have used successfully in fibo pain relief research. Unfortunately I have not been able to get him to try it yet. I will look for the spray you mentioned on my way home tonight...I'll try anything that may help him. It is so hard to see someone you love so much in pain. I have been encouraging him to reach out for more alternative treatments. He said massage did not help before, but I think I have him convinced to try acupuncture. We are lucky in that we live in a city with the Mayo Clinic which provides lots of good health care options, but problem is getting him to take advantage of any of them. I'm not going to give up though. I hope that at some point my gentle prodding helps him to help himself.
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
LisaMM, First thanks for caring for your husband. i know it is hard on both of you. your doing research and learning lots. please spread your knowledge.

First please see my posts: what is fibromyalgia and starting a daily log book. this will help with his meds and treatment plan. please reply to both posts so they will stay near the top of the list. thanks so much. have him come to this site and vent or even just read the post so he really knows he's not alone and learn for himself.

You said: he is supposed to begin doing cardio exercise.

I have Lupus,Severe Fibromyalgia,Neuropathy,Arthritis,severe reaction to metal and now i just found out i have spasticity. colloquially referred to as an unusual "tightness", stiffness, or "pull" of muscles. Clinically, spasticity results from the loss of inhibition of motor neurons, causing excessive muscle contraction. i know pain and how hard it is to work out.

I purchased a Body Blade for $99 or some are $49. Its a full body workout of all the muscles at once. they are one minute exercises. its easy to use and very little strength is needed. he can work up to one minute and do them a few times a day. it's a great cardio workout.

You said: I realized that I really don't understand what he is going through with having pain all the time and he isn't good at explaining it to me.

I have a trick i use to make folks understand my pain. get 1 or 3 wooden clothes pins and place them on your body any place you chose. try not to remove them. you will remove them in minutes. that is the pain he is suffering all the time. he cant remove the clothes pins. you cant see his pain like you cant see a headache pain. these pains move throughout the body.

You Said: He is extremely frustrated because he feels the doctors don't really care, they just tell him to exercise.

Most doctors like GP's dont know much about Fibro. My doctor told me if you have a cold or flu i can help you. things like fibro and lupus and arthritis are not what he does. that's why he sent me to specialists. no one knows much about FM. most doctors say it in your head. find a doctor that you can work with to start a treatment plan. get the meds he needs that are working and get off the ones that aren't. try a cleansing for 2 weeks, seems to be helping my pain.

There is only so much you can do for him. showing your support, understanding and love for him is your most important things in his treatment plan.
Help him with the daily log book, make sure he always has a cell phone on him, ensure he takes his meds and refill as early as possible. make sure you him and his doctor are still on the same treatment plan with each med refill. you dont want withdrawals.

I know this is a long post, sorry.

I've tried to answer your questions. please feel free to friend me and msg me anytime with your questions.

he's a very lucky man to have you. may he have many good low pain days ahead.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
I understand what your going through and can see how hard it is for you both. The pain of fibro can be wide spread and hard to explain to ourselves let alone other people. Often people like you who truly care about a person or loved one with fibro want to help by suggesting ways that try as we might we just can not tolerate. I would suggest a few different items. Sometimes pain can be reduced by making your bed softer. This can be done by buying a cotton fiber 3-4 inch thick pad that lays on top of your regular mattress under the sheets. It can be the cotton fiber pad or goose feather filled, or foam, either way it provides better cushioning for sore muscles thus improving sleep, which is a way to help stop pain. Another idea is to buy a full-length body vibrating mat that produces a roller like feeling from the neck down to lower legs or pinpoints a certain location. The ones that have a heat cycle are nice as well.

As stated above some walking may help but take it easy the first few times out. Go for a slow walk and enjoy nature, speed walking is not good for fibro. If you have a local area pool with heated water it is said that water exercise is easier on people with painful muscles or joints. Also after all the exercise is done a light massage with massage oil can be very relaxing. If his muscles are still hurting cover him with a blanket heated in the dryer.

Hope these tips help you both and hope you stick with the forum and read topic sections, old and new posts, and join in on the many discussions and questions started by other members. See you around the forum. :)
 
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