Thursday, May 2

Being there for a Friend with Chronic Pain

May is Fibromyaliga Awareness Month, so I thought I'd write a quick blurb on how to be there for a friend who has Fibromyalgia or Chronic Pain.

The best thing a friend can do is:                                                                                                                                    

1) Let them know you believe that they are indeed in chronic pain & that it isn't all in their head!

2) Be there for your friend in a physical way.

Think of this as being there for someone who is grieving a loss (a death of a family member or friend), in a sense, and how you would be there for that friend.  An FM person may not ask for help, either because they don't want to be a bother or because it doesn't cross their mind to do so. Plus, often they really are grieving their loss of independence and freedom of movement that they once knew and are feeling betrayed by their body at the same time.                                                                                                                                               

So offer to run errands, watch their kids, make meals that can be frozen & defrosted & quick cooked for those days when the idea of cooking is beyond them, clean their house (it's amazing how heavy a vacuum becomes and how hard it is to stretch to clean a shower or tub). What you would want or needed as a person in grief can translate into what your friend may want or need. It's for a different reason, but the same needs are there.
3) Be there for them in an emotional sense.
Whenever they need a good cry or laugh or need to bitch & complain. FM is a funny disease--guilt is heightened with it. Do not ask me why. But this has been found to be a medical fact! So you might find a response of thankfulness combined with extreme guilt when you do help them out with something simple like a meal or picking their child up at school...when they wouldn't have been that way at all in the past! This guilt, too, may also stop them from asking for help with physical things, which is why you may just need to step in and do it--make that meal, vacuum that house. And keep on assuring them that it really is not a bother and you really do want to help in this way--or any other way they can think of.                                                                                               

Also, emotions can go rather flat--because an FM person is dealing with pain both through their physical body and in their mind. And often it takes all the breath and concentration an FM person has to make it through a bad pain day or a flare up period. But then all of a sudden (usually with a "flare up"--meaning a time of worsened pain) their emotions can sky rocket and be all over the place. You know how when a woman is pregnant and the Hallmark ads or Folgers coffee ads can make her cry? Same can go for FM!! And what's odd is it can be a response that is waaaaay beyond what is normal for the instance (like bawling your eyes out over a TV program where ordinarily you might have said, "Oh that's sad.") So be a shoulder to cry on when they need it.                       

And of course there may be times of anger--mostly at their own body for betraying them in such a way or at doctors or "don't get it" or friends who don't understand, or the way their life has been forced to change because of this illness. Let them rant!
4) Educate yourself on their condition.

Read up on Wikipedia, or on blogs or go to national support sites. Get a feel for what they are going through. But (like someone who hasn't lost a child giving advice to someone who has) don't tell them you know how they feel or tell them what you think is best for them health-wise. (Eg Western meds vs Eastern methodology--though I've found a combination of both is awesome!) Send them links on good sources you've found but with a disclaimer (such as, "Saw this and thought of you..." or "Have you seen this/heard of this?" etc) and maybe with a brief summary (eg: "It basically says x y & z, which I thought was interesting because blah, blah, blah, but here is the link if you want to see it..."). You may even want to start a folder on your computer of resources & links etc for when they are up to looking at stuff like that. Or maybe they are crazily researching and reading every scrap they can come across! If so, ask them to share the links with you! Let them know they aren't going through this alone!
5) Go to Dr appointments with them--especially when they are first diagnosed, you really want to make sure they don't go alone initially.

This is a lot to take in and when you go alone you run the chance of                                                                               

a) missing something altogether or                                                                                                                   

b) misunderstanding something the doctor said.                                                                                                    

Having someone with you to take notes is extremely helpful.                                                                                    

(Also, as a patient, having a list of questions that you want to discuss and go over is very helpful and having a companion there to make sure they all get asked/answered is helpful.)                                                                             

Plus, given permission, you as the companion, may be able to offer additional insight to the doctor on certain topics because you've observed the patient--so where they might think "My gait isn't off at all" you might say, "Actually, I've noticed you are bumping into things more/holding on to things more/stumbling more" or something like that.
Want to start educating yourself: you can visit my quick answer section on what's wrong with me:
And this is a brief on Chronic Pain that includes a letter written by someone with Fibromyalgia to Non-Sufferers that is really good:
On a side note,  pregnancy massage & acupuncture bring great relief & my two stand by meds are Tramadal ER (aka Ultram ER) and Metaxolone (aka Skelaxin). The first is an a non-drowsy, non-addictive extended release pain med & the other is a non-drowsy & non-addictive muscle relaxant. There is also a lot of talk lately about LDN (Low Dose Naltrexone--a drug that has been around forever but in low doses has been found to greatly help with FM and is something I will be discussing next week with my rheumatologist as a couple of my FM friends are now on it and are having no pain!)
Some quick resources:

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