how to keep on living with fibromyalgia
How to to look on the bright side when you are in pain everyday… AKA how to keep on living with fibromyalgia
While we can never remove them compleatly, but,we CAN break the chains of fibromyalgia!
Dealing with constant daily pain is… well to state the obvious… a real Pain!
When you are in pain, the whole world becomes dark and dreary, this is a dismal place to live.
You hurt to even put your clothes on in the morning… not just the physical pain of movement first thing in the morning but the intense skin sensitivity that is made worse by those sleeves touching you.
It is hard to enjoy life when even a loving hug is painful!
Fibromyalgia is a painful condition. Everyone experiences pain, so those of us with Fibromyalgia or other chronic pain conditions all to often, get little support from our family’s, who feel that we are being over sensitive or love creating drama.
I explain Fibromyalgia like this.
Take 5 clothes pins, you know the old fashioned wooden kind with the metal spring… Place one clothes pin on each finger… for a little while it is tolerable… keep them on longer and they become painful… Longer still and they become unbearable and the wearer wants to take them off… Tell them that they cant!
After a couple more hours then explain that this is the kind of pain you experience on a daily basis… day in day out, 24/7, the difference is that they can take the clothes pins off and we can NOT! I saw this somewhere on one of the Fibromyalgia web sites but honestly can not remember which site has it. To them I apologise.
People don’t understand that even though we may not look sick, we really are. Life becomes an endless blur of pain. We get used to the pain, we adapt, but there it is beating us down throughout the day till finally we MUST Succumb…
It hurts to sit, it hurts to stand, we walk with an unsteady gait, we bump into door frames, stumble and fall frequently…
Thankfully for us the AMA now recognizes Fibromyalgia as a disease condition, and there are now 3 drugs approved by the FDA for the treatment of Fibromyalgia… we call our doctors hoping for a miracle cure but find instead that these “wonder drugs” are only a band-aid.
Dealing with the chronic pain of Fibromyalgia can and does cause depression… we deny it but deep down know it is still there…
So here are some tips I found useful to help me deal with the daily pain and disability I deal with every day from Fibromyalgia
Fibromyalgia affects more than just the sufferer… It affects the entire family This is probably the hardest thing to do… Accept that you did not cause this, it is not in your head!
Sit down with your family and discuss Fibromyalgia or your other Chronic Pain condition. Don’t leave anything out… be honest and frank in your discussion.
Try not to take it to heart if they do not understand or seem unsympathetic, some familys are like that. They make life difficult but you can not pick your family.
If you are lucky you will have a supportive family who will understand that you can not do everything you once did.
For me the Fibromyalgia hit like a ton of bricks… I could barely walk, my balance was horrible, all I wanted to do was sleep for weeks at a time…. These are the things you need to make your family aware of, hopefully they will understand, If they do not understand it will make things more difficult but not impossible.
Understand you can’t do it all…. Be honest with yourself
Take on projects in small bites, take your time so that you do not exhaust yourself and cause increased pain.
Fibromyalgia is a day to day kind of disease… today you may feel alive and full of energy and tomarrow you may barely be able to get out of bed!
Do what you can, and don’t sweat what you can’t!
get some help with everyday chores around the house If you can afford it try to hire someone to clean your home for you. This will reduce your exhaustion and still give you a feeling of pride in your home. Look into services but don’t forget that neighbors and even teens may be looking for some extra money and do just as good a job for less money.
You can also hire someone to do your lawn and heavy garden chores, dont forget the kid down the street, he may be cheaper than a service.
Try to surround yourself with positive people Positive people will increase your energy, they are supportive and will be more understanding.
Negative people bring you down, are not supportive and can actually cause you injury or increase your symptoms simply from the added stress or you pushing yourself to meet their expectations!
Meetup.com http://www.meetup.com/topics/ Support groups are out there! Realize that you are not alone. There are support groups for Fibromyalgia and other Chronic pain sufferers. Look on the internet, Meetup.com has thousands if not more groups of various interests. Not just Chronic pain, but gardening, stay at home moms, dog groups, singles groups, gay groups, the list is endless… They support all sorts of groups of people who have similar interests and want to meet others who like to share, exchange ideas or simply have fun. If you can’t find the group you are looking for in your area, you can start your own, they charge around a month to host a group but you can ask for membership fees or fees for each meetup you set up to help defray the costs of running the group. I have 2 groups myself on meetup.com and they still only charge me the a month.
Joining a gym like 24 hour fitness can keep you mobile Join a gym? Yeah, I know it sounds crazy but with Fibromyalgia and other chronic conditions you feel like want to avoid exercise but, exercise is necessary to prevent or slow down the loss of function that occurs with these conditions. You hurt, so you do less, and you hurt some more… you exercise, you hurt, but you do not loose as much muscle tone… There is a fine balance though that you need to be aware of and many doctors do not realize this or forget to tell their patients….
Realize that most of the machines in the gym are geared for “normal people” whatever normal means… That said, some machines we will be physically impossible for us to use without causing injury to ourselves.
Take care of yourself… do not attempt to work out on machines that are difficult or cause you pain!
Take things slow and easy, only work out for 10 minutes or so in the begining and see how your body tolerates it, even 10 minutes may be too much in the begining.
So don’t push, but at the same time you should force yourself to do some form of exercises daily, instead of 3 times a week as is suggested for normal people. Remember we are not trying to do a workout, we are just trying to do simple exercises Stretching exercises are necessary for us and may be all we can do but we MUST exercise daily!
After all we are only capable of a few repetitions on anything and need to exercise for our own health and sanity.
Gentle exercise is necessary, it increases “Feel Good Endorphins”, improves circulation which in turn removes the toxic compounds from our bodies that accumulate in those knotted and contracted muscles.
Listen to your body, place your mind in a peaceful state. Really listen to your body, you know you will be in severe pain by evening with your normal stuff anyway, so do streatching exercises.
Even simple Streatching exercizes are strength building.
Our muscles are in a constant state of contracture, meaning that they are in use constantly, they are pulled tight, this is what causes our pain. Gentle stretching pulls those muscles into a relaxed state, once relaxed the pain eases and we can then do mild exercise.
Ice may help ease sore aching muscles. Use Ice or Heat on painful muscles. For some people Ice works best. For myself I find this to be true. I am going to be making myself a big Ice pad using a pillow case which I will explain in my next ehow.
Only put ice or heat on the painful area for no more than 20 minutes.(yeah, I know your whole body is a painful area) Be sure to wrap it to prevent burns, yes Ice can cause a burn… Ice will cause your muscles to relax and the arteries and veins will close up a bit and reduce the blood flow to the area… How can this be a good thing? Well when a muscle or other area sends a pain signal to the brain, the body responds by increasing the blood flow to the area, this causes a localized inflammation… Since the ice will cause the blood vessels to constrict it reduces this blood flow and thereby reduces the inflammation.
Heat, especially moist heat can help ease painful knotted muscles Heat. For some Heat applied to the area is the answer. The pad I will be making can be used to apply moist heat just as easily as it will cold, so keep an eye out for that ehow. Heat works by increasing circulation to the area which inturn helps to flush toxins out of the muscles. This increased circulation will also increase inflammation so keep this in mind. Heat is also known to soothe aching muscles. Again do not keep heat on an area for more than 20 minutes.
Why no longer than 20 minutes you ask? After 20 minutes the skin looses it’s ability to sense if it is too hot or too cold and you can easily burn yourself without even realizing it, but also it has a physical effect on the body. After 20 minutes the blood vessels, tissue and muscles will do the opposite of what they were doing before! You loose the beneficial effect you are looking for…
Having a pet like a dog will force you to get up daily to provide for their care. Get a pet! It doesn’t necessarily need to be a dog or a cat. Although a dog can help you get out and about. Any pet will do, this will give you a reason to get up in the morning and out of bed as they MUST be cared for. They need to be fed and watered, dogs, rabbits and ferrets need to walked or exorcized, birds and reptiles need their cages cleaned, ect.
A pet will help you to look forward to starting your day as they are always happy to see you and depend on you to provide for their needs.
A dog or other pet that needs exercise will force you to get out of the house. You can take a short walk, even to the mailbox and back will help to keep you active and prevent the loss of muscle and tone. Again don’t over do things, if you walk too far you may not be able to get back home.
Having an assistive device like a 4 wheel walker can help you get around and be more active. If you have gait or balance issues ask your doctor for a physical therapy evaluation to get a cane, walker or wheelchair to get around. explain how you are having problems with mobility and balance so that you can get these assistive devices paid for by your insurance.
A service dog can be trained to assist his disabled partner Consider getting or training a service dog. Check state and federal laws to see if you actually qualify for a service dog. According to the ADA You must have a condition that severely limits your ability to do day to day tasks. The Supreme Court rulings have made this to mean nearly unable to do a particular day to day task of daily living… Some states have Service Animal laws that may allow you to have and use your service dog in places of public accommodation even if you do not meet the federal law.
Anyone who is disabled can have a Service Dog to assist you in your own home, but you must meed a certain criteria in order to use a Service Dog in public places… Check with the ADA guidelines AND your state laws to see if you qualifiy to use a Service dog in “places of public accomodation”.
A Service Dog can be trained to assist you to in various ways including but inot exclusive to helping you with balance and mobility, picking up dropped items and bringing them back to the handler, carrying items in a backpack, helping with doors, laundry ect.,
Get a hobby like gardening, collecting coins, puzzles, anything you really enjoy a hobby can keep you mentally stimulated and help you at least temporarily forget about the pain.,
A hobby will keep you busy, you can work on it when you feel up to it.
It can give you a sense of accomplishment and putzing around with it keeps you active and mentally alert.
Volunteering can give you a sense of belonging and provides help and support to the community in which you live If you are classified as totally disabled and receiving SSI or SSDI you can feel pretty worthless. After all even the Government acknowledges that you can no longer be productive in the workforce…
Volunteering can help boost your self esteem and give you a reason to get out of bed in the morning. There are many places where you can volunteer your time and help the community in which you live.
Foodbanks
Animal Control and local rescue groups always need volunteers
local hospitals
Long Term Care Facilities
Community outreach programs
I am sure if you look around you can find even more places where your time will be beneficial to the community and boost your self esteem and make life worth living.
For me fishing is soul healing… just sitting there looking at the wildlife and landscape is peaceful Take time out for yourself.
Do what you enjoy but remember your limitations, you can push them but, as you well know you will pay for it tomorrow.
Some things are worth the pain and fatigue!
Go fishing with friends, take a hike with your friend or dog, go to the beach, even climb a tree if that is where you find your solace from.
Everyone needs to take a little time to pursue what makes them feel calm and at peace.
For me, I used to hike in the woods get out there and really hike, rock climbs were great fun also. I really miss it and I can hear the mountian trails call to me when we drive thru areas where I would have pulled the car over and gone exploring…
Instead now, I go fishing. I loved fishing with my dad as a kid so I have a special connection to the shore and the water, I find it soul healing to sit on the bank of a lake with my pole in the water. I don’t care if I catch anything or not… Just sitting there heals me and gives me the inner peace and some of the strength I need to deal with the pain and struggles of every day life… I give myself 1 day a month for something that is healing to my soul… Usually a day of fishing for me
Remember you did not bring this on yourself, it is not a punishment for past wrongs
Life is wonderful, you can still get out and enjoy the world around you with chronic pain, just take things slow and easy
gather supportive friends and family around you
Do something to give yourself a reason to get out of bed every morning
Accept that you do have limitations, and ask for help if needed.
Consider a service dog to assist you with things you can not do or find difficult. The dog will give you your independence back, he doesn’t complain when you ask him to pick up your pen for the 15th time and actually looks forward to it!
Depression is common when dealing with Fibromyalgia and other chronic pain conditions. The depression is a result of the pain not the cause of it. You are not mentally ill as some doctors still believe… If they tell you it is in your head or you need a psychiatrist… FIND A DIFFERENT DOCTOR!
Be proactive in treating your condition. You know your body, tell your doctor how you feel, where you are currently experiencing weakness or pain so that the two of you can make educated choices on how to treat your particular symptoms.
Despite the pain, you MUST exercize to keep what function you have
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