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could use some advice...
5 Replies
LadyLoo - July 30

Hi! I've recently been diagnosed with FMS and am having a hard time coping. My mom was diagnosed years ago and says that she "just ignored the diagnoses" and unfortunatley does not seem to have any empathy to what I'm going through. My house is a mess and I have no incentive or desire to clean. I'm embarassed with myself and my coping techniques (I only feel better when I'm laying flat). Just wondering if anyone could give some advice on how to turn this around. I go to an accupuncturist, and hypnotherapist. And have in the past tried many different techniques. I feel lost, misunderstood, ashamed, and guilty that I can not preform my usual tasks. Is there any hope?

 

Fantod - July 31

I was sorry to read your post. I know that learning that you have a difficult and chronic illness is a very hard thing to accept. You and I have a similar story. My mother does NOT have FMS but she comes from the same school of thought when it comes to dealing with illness. Probably her British upbringing - stiff upper lip and all of that tommy rot. I, for one, am not wired that way. I am not a whiner but I certainly can not soilder on in the face of unrelenting pain.

You've got a lot on your plate right now. Instead of focusing on the things you can't do, be grateful for anything (no matter how small) that you can accomplish. Who says you have to clean the entire house in one day or do all of the laundry? Break things down into smaller, more manageable increments. If anyone complains, suggest that they lend a hand. Delagate, delagate and delagate some more. Learn your limitations and respect them. Fibromyalgia (FMS) is not very forgiving if you overextend yourself. Learn to say "no", mean it and not feel guilty about it.

I think one of the most empowering things that you can do is take some time to read all of the information in the blue boxes on the lefthand side of this page. Knowledge is power. You will certainly know more than your mother does about FMS since her coping mechanism is to ignore it.

There are a lot of recent developments when it comes to medication for FMS. Lyrica, Cymbalata and Savella are used to treat the pain associated with this syndrome. You don't mention anything about your level of medical care. I hope that you are seeing a competent rheumotologist. You may want to add a pain specialist to your medical roster. If you are not satisfied or have one of those doctors who is still insisting FMS is not real there are a couple of things that you can do. Call your local hospital physician referral service and ask them for some recommendations. You can also go to the National Fibromyalgia Association website and register. Then you can see healthcare providers in your area. Incidentally, did you know that Fibromyalgia is recognised by the Center for Disease Control and the National Arthitis Foundation?

And finally, if you can not work your way through this grieving process, please get some help. There is no shame in asking for some medicial support. I have a therapist who has been very helpful. I'm a fighter by nature but this syndrome can really drag you down. Sometimes in unexpected ways. Stop beating yourself up - you are sick. You need to take care of yourself; everything else will eventually fall into place.

I hope something that I said has been helpful. Take care and God bless.

 

arobin - August 1

I feel like you do. My family is great, but I went through a divorce a little over a year ago and have three kids by myself (their dad has no relationship with them) and I think my family worries sometimes I am depressed rather than ill. I know they worry about me, but it is really hard for people to understand how you feel. Everyone is different and not everyone feels the same symptoms with fibro. My house gets in a mess too. This helped me, but I don't know if it will help you, I got help from family getting my house in order. I do think they realized that laziness wasn't my problem. The days we worked on cleaning out they saw when I couldn't last as long or couldn't do anything the next day because of pain. It gave us a little more time to talk while being occupied. There are days that my kids will go to dinner or movies with my parents and I know they want me to go, but I love the peace and quiet. It kind of recharges me for doing other things with the kids. This stuff is tough. I hate being diabetic. It is such an inconvenience, but at least I feel like I have a little control over how I feel. With fibro there isn't as much control. Factor besides what I eat can make me feel awful. I don't know if I helped, but it helps me to know I'm not the only one suffering. Try not to feel guilty. We can't help that we don't feel well. I do have a lot of faith and I really feel like we go through things for a reason. Feel better.

 

LadyLoo - August 2

Thank you for taking the time to respond to my post. I am on Lyrica and amitryptoline for pain but do not have a permanent doctor. I am waiting for a call from a rheumotologist but it can take quite a long time (I'm in BC Canada) as there is a shortage in medical professionals. In the mean time, I just keep on keeping on and pray that God will open a spot with a competent doctor. Again, thank you for all the great ideas and empathetic support. It has truly lifted my spirits in these days of uncertainty. Blessings.

 

Beone - August 22

Hi ladyloo, Dont beat yourself up, this condition can take out the best and lay them flat. Ive had this fms for years and from my experience you have to do your best to know that there is no wrong way to deal with this, i found that everything has a meaning you put on it, and the universe has not made a mistake in a very long time and since we are part of that universe then their is a reason for us to have this condition, so what are the reasons,
to learn compassion for oneself and for others,
not to judge oneself and others,
to love all life. to find the meaning of pain. Pain makes us stop.so we have to trust others and the universe because you can't do anything about it. pain makes us let go of control, scary but when you do you become more powerful than you can now understand.

 

Sonja44 - August 30

Well said everyone!

Everyone is affected differently with this illness...and needs to do whatever is needed to not feel worse.

 

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