Overly helpful family/friends

[KayRock]

I know it sounds like a crazy thing to complain about. Who would complain about someone being helpful?

But pretty much any time I break down and talk about my health, or get pressured into it because "fine" is not going to be accepted as the answer to "how are you?" I tend to get inundated with CURES.

Everyone knows a doctor, or a shaman, a clinic, a therapist, or a magical healer who deals with people "like me" all the time and cures them. Everyone knows a treatment, a drug, a poultice, a magical elixir, a diet, a pill, or some special water that totally healed their dentist's receptionist's cousin's neighbor's daughter. Everyone thinks I am terrible at google and cannot possibly have fully researched my own health, and they read an article that will fix everything for me. Have I heard about...? Have I tried...? Have I considered....?"

If I dare to resist driving the 200 miles to see the magical healer or pay the 20K for the weeklong healing retreat, I am RESISTANT to getting help. It fortifies their secret suspicion that maybe I did this to myself, or it's all in my head. I see the pursed lips. The slowly shaking head. The complete disapproval at my lazy refusal to "do what it takes" to get better.

How can they possibly think I or anyone like me has not tried everything and used every financial resource at our disposal in search of leading a normal life? The money I have spent... the time I have spent, the travel, the weird diets and drugs and injested things and applied things, the desperate stabs at finding maybe the rare doctor who actually wants to deal with something that can't be operated on or medicated... I want to scream at the very idea of trying one new miracle cure. Don't they think that if that clinic in wherever, Thailand had the cure for autoimmune and/or fibromyalgia the entire world would be flocking there? That if a new cure/treatment were developed I wouldn't be the first person in line to try it?


And yes, I get they're just trying to be HELPFUL, but after a while, it gets to the point where I just lie about how I'm feeling so as to avoid the blame-laden, shame-inducing, endless advice. At which point I hear "Oh great! I knew you'd eventually get over it!"

I would probably weep with gratitude just to hear the words "That's awful! I"m so sorry you're feeling that way. It isn't fair!"

 

[KayRock]

And aha! Just a few hours later I get a text from my mother telling me that her good friend's husband was completely cured from fibromyalgia with prednisone, and I should do that.

 

[CJSkippy]

Oh my gosh, if it weren't so sad, your post would be funny! Yes, people have all sorts of ideas about how losing weight, taking this elixir or that, will cure us. Thing is, they just can't deal with the fact that we have chronic pain. They cannot accept it, because it causes us to not be able to do all the things they think we, "should," be doing. They simply don't get it.

It is similar to when I lost my husband almost three years ago, and people would think I ought to be, "over it," in any time frame they thought was appropriate. I was on an inline board with wives who had lost their spouses and they all had the same experience that way. None of us wallowed in our grief. We were all capable women who had helped our husbands during a long battle with cancer.

People are not comfortable with what they cannot understand, including nurses and doctors.

I am glad you shared this thought.

 

[Momneedsanap]

I laughed a bit!

Here is one that’s funny and true: my own mother told me about some form of yoga taught by a former WWE wrestler. I mean, yoga okay... but this was the specific suggestion.

Some ask why I’m not trying the cymbalta and lyrica and I keep explaining because the side effects may be worse than my current situation.
I’m Newly diagnosed, and these drugs only treat the symptoms.

My neighbor sells juice plus and has suggested that and a vegan lifestyle. I try to avoid telling anyone involved in an MLM. Some of Those people are monsters. I saw one using yesterday’s Kobe BRyant tragedy in connection with her MLM!

 

[sunkacola]

Honestly, I am not certain those people are genuinely trying to be helpful. I think it might be that some of them are using their suggestions as a criticism.

Here's what I see: some people have a need to make it our fault that we are debilitated at times. If it is our own fault, then it couldn't happen to them, because THEY would do X, Y, or Z....and get all better!

People are made fearful by other people's lack of good fortune, no matter what form it takes; they have to make it in some way the fault of the person affected so that they can (self-righteously) feel confident.

No one wants to believe that it is just more or less random fate that causes some people to get ill.

 

[CJSkippy]

I so agree with all of you. I have decided to do everything I can for good health this year. I am going to go on the whole foods 30 day anti-inflammatory diet, ask my doctor for PT, lose weight, start some kine of exercise program and look into the Functional Medicine treatment one member mentioned. I figure if I do everything I am, "supposed," to do, at least I can say, it is not due to that! Whatever, "that," is.

 

[Schuyler Levoe]

There is no cure for Fibromyalgia! it could go into some kind of remission, mine never has but reducing stress helps to keep it at a dull roar. I don't discuss it. It keeps the stress down that way, everyone's opinions are not helpful. But I guess that way you miss out on a lot of people who truly care and are there for you. I really don't blame these people, they want that person back that worked the 60 hour work weeks, went to college putting in another 60-80 hours, and was there for every family or friend occasion. She was happy and wanted to do things like jog and play tennis. You have to come to the place that, what is best for you is good enough. I had to set up firm boundaries and take care of me. Isn't that a novel idea?

 

[sunkacola]

There is no cure for Fibromyalgia! it could go into some kind of remission, mine never has but reducing stress helps to keep it at a dull roar. I don't discuss it. It keeps the stress down that way, everyone's opinions are not helpful. But I guess that way you miss out on a lot of people who truly care and are there for you. I really don't blame these people, they want that person back that worked the 60 hour work weeks, went to college putting in another 60-80 hours, and was there for every family or friend occasion. She was happy and wanted to do things like jog and play tennis. You have to come to the place that, what is best for you is good enough. I had to set up firm boundaries and take care of me. Isn't that a novel idea?

Good for you, Schuyler. I agree with all you say above, and it is at times tricky to draw the line between who is really there to be supportive and who is not. I go with my "gut" feelings about this, and also go by whether this person brings stress into my life, or is easeful of my stress, or at least doesn't make it worse. Like you, I don't fault the people who want the person I used to be back again, and don't want to be around the person I am now, who has to cancel plans on occasion. Some are better at going with that than others. But I tend to believe that the people who genuinely love you for yourself will stick around, because that is how I am. If I love someone truly, then that love doesn't vanish because they are sick or depressed or go broke or leave the country or whatever. At the end of the day, you need to take care of yourself and so do other people. It sounds as if you have come to a good place within yourself, Schuyler, and I applaud you for it. Wishing you the best.

 

[MinGraphics]

We all feel your pain, as someone who has been dealing with Fibro so long I’ve seen and heard it all. I have tried all the diets, the only thing that made a difference is staying off dairy for me. We even went vegan for 18 months but the lack of protein was killing me, I’m sensitive to soy and could not eat it like my husband. I did end up taking Cymbalta and lyrica after I had total hip replacement. I’m allergic to narcotic pain meds even morphine, so I was put on lyrica for a month after surgery, after it was stopped I realized how much worse I felt. I asked my doctor to put me on it.
Well meaning friends and family will give up at some point trying to cure something there is no cure for. If there was a cure then none of us would have Fibro! If not for my husband, who gets it I would have no one, because all plans can change from day to day, I cancel more plans than I can keep, it’s hard. Keep your head up, with your doctors help you will find the right combo of meds for you. Treating the symptoms is all we have.

 

[diamond]

I've just been given lyrica....as a last resort. The dose is a childs dose. 25 mg but is made me loose my balance and feel like i was falling in all directions and like my head wanted to jerk by itself. The dr said to stop it but nothing else has helped the severe neuropathic pain. I lived with no meds for years and have tried cocodamol and tramadol but neither has helped.

I loathe medications and so wish my fibro was back at a level i could tolerate and stay active. My partner has just left me after 23 years because of my health ....gone off to live what were our dreams on his own or maybe someone else by now.

I have very little fight left have had years of all the disbelief and comments you all speak of from everyone around me. Everyone is sick of me getting worse not better.yet when i was doing way better that still wasnt good enough and i wasnt doing this or that or whatever!

Lyrica scares me i'm not sure i can handle incase it does long term changes like mood disorders coordination problems etc it says on the package warnings?

 

[sunkacola]

Diamond, remember those warnings are all of the possibilities and extremes. they have to list it if there is even one documented case of it. Most of them have not affected the vast majority of people who take the drug. Try not to worry. Worry exacerbates stress=makes Fibro worse.

I, too, recently lost my partner although it had not been as long a relationship and I was the one who left. I know I made the right decision, but that doesn't necessarily make it easy. I sympathize with you on that, though.

I do understand your dislike of drugs. I share that, which is why I determined to get myself as much off them as possible. I made that decision three years ago and it has taken me most of those 3 years to feel I have made significant progress. It was very slow going - still is, really.

My success in dealing with Fibro cannot be replicated by everyone, although I so wish it could. I know it has been terribly hard on you, and you have said that getting even a little exercise has resulted in a lot of pain for you afterward.

I wish I could help you in some way. I do still think that if you got determined to be more active, and started out as small as possible (a walk around the living room, for instance) and built up in very tiny increments very slowly, you might be able to become more mobile. I know it would be super hard. Maybe it would not ever work for you, I don't know. But I do know that practicing more mobility has pretty much across the board been helpful to people suffering from Fibro.

Whatever you do, I am here for you. I know that doesn't really help; I am a disembodied series of notes on the forum who doesn't even use a real name. But I'm here anyway.