In a recent edition of Fibromyalgia Aware magazine there was an article titled “10 Things You Should Never Say to a Fibromyalgia Patient,” by Linda Meilink. Here are the ten things she listed:
1. I think I have that too.
2. My sister-in-law has fibromyalgia and she’s still working. She says it helps to take her mind off the pain.
3. But you look okay.
4. Is that a real disease.
5. Maybe you just need some B vitamins.
6. Do you have any percocet? I could sure use one right now.
7. Well, we all start to ache when we get older.
8. Can you hold this box for me? I can’t find my keys.
9. Does this mean you won’t live as long.
10. Well, just try to look on the bright side.
Linda Meilink goes on to qualify each thing on her list, and these clearly come from her own personal experience. But it got me to thinking. What has been said to me over the years that has just made me cringe? So here is my list.
1. Did you see that commercial for the new drug that cures Fibromyalgia? – Now this drives me nuts because, A) It does not CURE Fibromyalgia. It is an anti-seizure medicine which has proven to reduce pain in FM patients. B) Pain is just one of the symptoms of FM and it does nothing to address the others – fatigue, fibrofog, dizziness, sleep disorders, etc. C) It has its own list of side affects that some of us would rather not expose ourselves to, and D) I chose not to take prescription drugs to treat my FM.
2. Fibromyalgia is what they diagnose you with when they are not sure what is wrong with you. – ARGH!!! I heard this most recently from someone who was quoting his friend – AND HIS FRIEND IS A DOCTOR! FM is still under-researched and misunderstood, but it is real, and recent testing is going a long way to prove that. Now if everyone in the medical field would just open their mind to the possibility, great progress could be made.
3. If you would just exercise you would feel better. – It is not that simple. Yes, gentle exercise can be beneficial for fibromyalgia, but it can and does cause flare-ups. It is a matter of slowly building up your tolerance, but forgive us if we do not go out of our way to deliberately cause ourselves more pain. It really is a vicious circle. If you knew something you ate would make you healthier, but that you were going to throw up violently each time you ate it, could you?
4. You can’t be here by 10AM, how about 11:30AM? – Uh, no. When I am down, I am down. I will not magically get better in an hour and a half. But thanks for being flexible!
5. Well it is really common. – Okay, so does that mean it should be easier to deal with? Are you equating it to acne or ingrown toenails? I just don’t understand this comment. Pain may be common, but it is still painful. Common does not equal easy to live with. And part of what makes it seem so common is that it is currently being over-diagnosed, but that is for another post.
6. A lot of people are much worse off than you are. – First off, this is absolutely true. I have a lot of fortune in my life – friends, family, etc. But everything is contextual. This is my life, and this is what I struggle to live with everyday. Somedays I manage well, but others I am a total and complete mess. Does that mean that I am being insensitive to my neighbor who has terminal cancer? No, I don’t think so. It simply means I am struggling and could use a little empathy. So reminding me that it could be worse does not make me feel better, it simply makes me feel guilty for indulging in a little self pity.
7. How is your back? – I got this one a lot after I was first diagnosed 11 years ago. The original injury which brought on my FM was to my neck. I had never had issues with my back, and yet numerous people asked me this. Often the same person more than once. Pretty ungrateful of me to not appreciate their interest in my health, but it always confused and frustrated me. This is a much more appropriate question since the accident two years ago. My back is killing me right now!
8. Have you tried acupuncture? – I would love to try acupuncture, but who can afford it? It is not something you can do one time and reap the benefits of it. It is something you need to do repeatedly, and it is costly. I have not always had insurance, and when I have acupuncture/massage is not covered. It is too bad that holistic medicine is for the most part not covered and that it is so expensive.
9. Maybe you are just depressed. – For a lot of patients Fibromyalgia and depression do go hand in hand, and until recently many doctors believed that FM came out of depression, but that is not the case. Many women with FM have never suffered from depression. I have had some pretty low days, but I can honestly say that I have never been clinically depressed. FM has changed my life so dramatically I have had a lot of trouble adjusting and adapting. I have been mad, sad, angry, unreasonable, and a few times I felt close to losing my mind – but tell me, could you be physically tortured and never respond dramatically to it?
10. Silence. – No response is sometimes the worst response. I have had new doctors sit and smile condescendingly at me while I explained to them I have Fibromyalgia. They never say it, but I know they are thinking that it is not real, that what I am experiencing can be explained away, that I am weak, and a hypochondriac. They say a lot by sitting there saying nothing at all and I hate them for it. I hate their close-mindedness and their pre-judgement of me. I can never get past their silence.
So that is my list. What is on your list?
NOTE: My husband thought this was a little edgy and he could tell I was clearly not feeling well when I wrote it. The very nature of the subject tends toward negativity. I hope this is not too abrupt to read but I am choosing not to edit myself.
Well, I agree with Rob it is edgy but……………. for good reasons! You have had a long time of dealing with this crap. I don’t blame you for speaking your mind. YOU SHOULD!! I have told you that. Afterall it is your web site so you can say what you want. I am proud of you and I am here for you. People like you make a difference in this world. I LOVE YOU
You know how hard I try to be positive about everything, but sometimes I need to just scream. Sometimes it all just pisses me off. I have always been able to share my frustration with you, but this time I guess I decided to share it with anyone who reads my blog. Once again sis, thank you for all your support. Love you!
Im not sure how I stumbled onto your website/blog, but God Bless You and Im sure glad I did!!! Finally someone who knows how I feel, thinks what Im thinking, and does not feel compelled to censor their remarks for fear of people finding them repugnant. Fibromyalgia doesnt get easier as time goes by; its gets harder by the very fact that it never goes away,not any of it. In particular it even gets more wearisome as you cope with the same life-draining physical and emotional issues everyday like it was the first day. That includes all the eternal ridiculous judgements that can hurt as much the firsrt hundered times you experienced them, infact sometimes they feel like they hurt more now. I thought I was stronger than most people. Maybe I am, but let me tell you Id be lieing if I did not admit to the unending struggle life has become with this disease and if I cant express that anger and frustration at times I will most cetainly lose my mind. If my expressing what hell life is with fibro upsets others, then just maybe they “get it” a tiny little bit. As women, we are socialized not to complain and to be “good patients”(probably an ideal dreamed up by men and/or the Catholic church). All I know is that as a former Registered Emer. Nurse,long distance runner,mother of 4 and active community volunteer, having my life that was, all but destroyed has been a painful and isolating loss. To pretend that it is anything less, to make others feel at ease is disrespectful to me, my husband, my children and to the untold number of sufferers of Fibromyalgia who are hurting, desperate, isolated,often too sick, too fatigued , too embarrassed and vulnerable to NOT be heard again!!!!!Fibromyalgia destroys lives. Fibromyalgia destroys marriages and families,fiendships andcareers. It very often renders vibrant, vital, active members of society completely disabled. At the least it leaves people with chronc pain,fatigue and diminished capacity. This is not a polite disease and it is high time to get pissed off.
I don’t know who you are, but you just said everything I’ve ever wanted to say about this illness and then some. I am crying that was so empowering! Like you stated, if we can’t say what we feel about this illness, we will surely lose our minds! It don’t get any easier, it gets harder and to hell with the ppl that sweep us under the rug like household dust! All modesty and politeness here is out the door!
Hi Chris, and welcome to my blog. I am very happy you stumbled upon it.
For years I did censor myself. I would never do or say anything that I thought would make anyone else uncomfortable when it came to my health. This blog has really liberated me. I have become more accepting of my feelings and frustrations of living with a chronic illness.
I had to read your comment a few times. There is so much to absorb there. It is clear that you have been holding a lot in. You are pissed off and expressing it – GOOD FOR YOU!!! It makes me very happy that you felt comfortable enough to do that here.
I love what you said about Fibromyalgia rendering “vibrant, vital, active members of society completely disabled.” It is so true! I really believe that Type A personalities are more likely to end up with FM – people like you – a wife, mother, nurse, athlete and community volunteer. While some diseases do not discriminate, I believe FM chooses strong, active and giving people. I know I was and FM has taken it all away. I am working really hard on taking some back!
What do you do to cope Chris? Do you have a good support system? I have just recently started a local support group and so far we are all getting a lot out of it. Please feel free to come back and share whenever needed. All my best!
Hello All. I stumbled upon this web site also looking for someone to talk to about a Rx I am taking. Before I get to that I will say that my Dr. suspected Fibromyalgia several years ago. My treatment was lots of different Rx and anti inflamtories. My Fibromyalgia may have been brought on from nerve damage caused by a tumor that was found in my neck wrapped around my spine. It was removed several years ago, and after 2 more operations, the last being about a year ago, most of the spinal cord problems are gone. I still have the scars and bone issues from C3 – C7, but my spinal cord is free from pressure. The Fibromyalgia is very evident in the morning and evenings. Some mornings I wake up and seem to ache with anxiety. I lay there and think, “There is no good thing that can come from getting up today.” There was one morning about 3 weeks ago that I woke up pain free and honestly I ask myself the question out loud, “Am I alive?” I thought I was in a waiting room to be judged to get into heaven. Back to the point, I typically push myself out of bed, grumble at my wife and join her for coffee. Recently I had my Dr perscribe Lyrica and I have been on it for 2 weeks with little to no bad side effects that I can tell. What I can say is that once I push my self out of bed, my ache during the day is much less. Something happened today that has not happened in recent memory. I started walking around my block, about 1/2 mile and started jogging like I usually do. Typically I can go only about 30 steps before the ache in my legs, lungs, chest and back cause me to stop. Today I felt no ache and just kept going all the way around the block. 1/2 mile may not seem alot but it is something I have accomplished only 2-3 times in the last 10 years. The other 2-3 times I remember pushing through the ache and feeling like Rocky. This time I stopped not because I was tired or ached, I stopped because I was back home. This is a bit scarey to me, it should be great but I don’t quite believe it given that it was only once. Tomorrow I should try again and see? I don’t even know if it was the Rx, or time passing and my body healing. I will say that I notice my legs alot less these days. They ache less and sometimes I feel like they are disappearing or weakening. This is probably a good reason to make sure I use them more. I have ached for so long, I’m not sure what to do with out it. I’m really interested in anyone elses thoughts. If time or the Rx is eliminating the ache, what else will happen? What should I look for and do and not do? Thanks
Hi Craig. I should begin this by saying I have never taken Lyrica, and I am not an expert on it, but I do have some knowledge of it from people I know who are either on it now or once were.
I am so happy for you that you are experiencing an improvement in your health and pain symptoms. It sounds like you went through a major ordeal. Personally I am hopeful that your improvement is because your body is healing and that it is permanent.
From the little I know about Lyrica, some people respond well to it and others have more side affects than relief from it. I know of a few people who are doing very well on it and swear by it. I also know of a few others who were doing well on it and after some time it stopped working for them.
Whatever you are doing to be able to wake up in the morning pain free – KEEP DOING IT! What a blessing! There are a lot of us that can sympathize with waking up and wondering what good could come of getting out of bed.
In my office I have written, “Today is a blessing, what are you going to do with it.” Some days I need the reminder more than others. Today you shared your story and have passed along a little hope to the rest of us. Thank you!
I hope someone else will respond who has more knowledge of Lyrica and can answer your questions firsthand. And I hope your health continues to improve.
Hi Craig, I am on, and have been on lyrica for about 5 months now, and I would be willing to answer ant questions you have,,,
I will say that I am very lucky, as I have deffinatly not experienced any of the negative side effecys from lyrica, nothing but positive side effects, and I know that it does work for me , because a few times I have missed doses, and I notice pretty quickly, as my nerve pain returns with vengance, I think the trick is to start out on a very low dose, I started with 1 x 35 mg/day, for the first week, than, and since than I have been on 3 x 35 mg /day, as well as 75 mg x 1/day of venlafaxine, {antidepressant that provides anelgisic pain relief, and tramacet when needed for pain, which on bad days 2 at 8am, than 2 at like 1 pm, seems to really get me through the day, so this is what I have been taking for a while now , and it seems to be a great combinatrion for me,
I also had a horrific injury, I was crushed by a cow at the dairy farm I was working at, and even after 6 months of therapy {massage & light physio} my symptoms from the injury were not subsiding,,, my doctor at one point threw his arms up in the air, after every MRI, x-ray, you can imagine, with no results. WCB finally sent me to a pain managment specialist, and through the tender point examination, I FINALLY new what the heck was wrong with me.
After the diagnosis my GP has been amazing, since I was prepared to find a different doc, cause he seemed at first to have that attitude, like fibro is not a real disease, and phycological,
so I went into the next visit, prepared, and with a more assertive attitude than I usually carry, which kind of reversed the power position . I came in, sat down, and before he could say anything, I said “well DR. P, I will be honest with you”, ” I have the feeling ,that you have a varried opinion about this disease, I want to let you know, that if you are not prepared to acknowledge, and treat this diagnoses, of fibromyalgia, as my acting general practitioner {because they do work for us, we pay their salaries} , “than I am fully prepared today to go and find another doctor whom will treat me with respect, and do the best they can, to help me get back to my daily activity level, having a vested interest in me as their patient”.
Well, seriously, you should have seen his face LOL, I really don’t think that he thought this weak, pain filled girl that he had been treating had that kind of gumption in her!!
However it has been the BEST thing I could have done!!
we have gone from him thinking that it was all in my head, to the last visit I had with him, he said “Well , kasha, you now have the most knowledgable doctor in the valley, as far as fibromyalgia is concerned”, he had been working at home in his private family time, studying, and finding any new research or as much information, as he can on fibro!!
I feel so lucky, now, that I decided to talk to him first, instead of leave, and I feel like I have the best doctor in the world!
So , to all of you FMily out there, be open honest, and assertive, {not bitchy, but assertive} with your doctors, and help them to help you as much as you can, and you will hopefully end up as lucky as me!
Oh!! and as well, he refused since my injury to give me pain killers, {this left me pretty much disabled}, because after 6 months he thought that the injury should be healed,, but after the diagnoses, I went into his office, with some, very powerful research done on fibro patients, and pain killers,, the research showed that only 2 people out of 570 patients with fibro became addicted {not dpendant,, this is a very different thing which speaks of the bodies dependancy on the drug, which always happens}, when compared to 570 non chronic pain, or fibro patients, but people whom carried on usage, after whiplash, or other injuries, 117 patients became addicited, so as you can see the #’s speak for themselves,,,,,
ANYHOW, as I was saying I took this info in prepared for battle with him, as it usually was, in the past when asking for pain killers, and him wanting to prescribe me some stomach killing anti-inflammitory,,, but I was amazed {this was my next visit after the confrentation visit},, he said “oh kasha of course I’ll give you somthing for the pain, I feel bad that you have suffered this long, but you have to understand that a lot of other possibilities, have to be ruled out before a fibro diagnosis is defined”. So that is when he started me on the lyrica, venlafaxine, and the tramacet for pain,, and I am a happy camper today, I can get throught these draining days of physio, and stretching and exersise,,
Which I gotta tell you that STRECHING has really improved my symptoms!!!! you should all try some very!! gentle stretching everyday, and see if it helps you
Anyways I have written a novel here,,,sorry about that, but I tend to write a lot when I get all excited about somthing, and want to share with others,,,, well take care everyone, and if you want, I am on facebook too, my name is kasha marie ferguson csik, if you want to look me up, but I will be back if anyone has any ?’s
Take care ,,, gentle hugs to all kasha
Kasha I am so happy that you forced your doctor to become knowledgeable about Fibromyalgia. Good for him for being open minded enough to listen to you, but even for better for you for making sure you were heard! Thanks for the novel. I enjoyed it! FH
by the way craig, I share your frustration, as my injuries, were also in my cervical spine, as well as in my mid and upper back, I get a lot of muscle spasms in my neck, trap muscles, and my mid back, so I understand!
and to fibrohaven, thankyou so much for this blog, you know after visiting soooo many fibro support groups online, and seeing all the VERY sick threads {what I mean is they seem to keep eachother sick instead of incourage}, your blog is very refreshing, honest, and supportive,,,,, thankyou ! kasha
Thanks Kasha! I really appreciate your feedback and encouragement. It helps a lot on days when feel like I am just babbling. Thanks also for your comments to Craig. FH
Hi Craig and everyone else on this thread.
I have been taking Lyrica for about three years. I take 300mg a day. I also take a few other meds as well. Iknow the Lyrica works for me because I have tried to be off Lyrica twice now. I have accepted that I must take this medication even with side effects. The main side effect for me was weight gain. I have probably gained 20 extra pounds on Lyrica, luckily I am still at a “healthy” weight according to my BMI, but it does get me down because I feel overweight in comparison to my earlier years in life. I cannot participate in my life when I am not on this medication. So , the trade-off is worth it.
It is not a wonder drug, but it does help.
Susan
Thanks Susan. I have read repeatedly that it causes weight gain, but if it allows you to participate in your life, 20 extra pounds is a good trade-off. Thanks for the info and for taking the time to respond to Craig. FH
All. Thank you for the comments and encouragement. I am traveling to a wedding and will go on line with my laptop as soon as I get to the hotel. Talk soon. Craig
I have had GREAT success with Lyrica. I have been on a good mix of Doxepin, Lyrica and Flexeril. The pain clinic in my state is one of the best in the nation. I was told by my Dr. that I am one of the worst cases he has ever seen. (I was on MS Contin and MS IR for nine months) The combination of those three RXs have made a world of difference for me. I work 50+ hours a week, I pastor a church, I am in school, and I live on a working farm. None of it would be possible if it were not for my “special recipe”.
I am a network administrator, so I need my brain to work correctly. My current Rxs allow me to do just that.
Now for the bad part. At first I had several bad side effects. It was actually because I was mixing the OTC allergy med Claritin with the others. I had audible and visual hallucinations, but as soon as I dropped Claritin, it went away.
I have gained weight (I am 6′ and weigh 172), I drop things constantly, and I am beyond cranky. Whatever pops into my mind comes out of my mouth… (usually not too good things)
With a little understanding from friends and family, along with not picking up any family heirlooms, I am managing just fine.
After being on HEAVY narcotics for years, any side effects are well worth being nearly pain free most days. Today is an exception. I have been diagnosed for over 11 years and this mix is by far the best I have been on.
Thanks Chris for sharing about your “special recipe.” You definitely sound like the traditional Type A personality that FM seems to search out and try to destroy. You have a lot going on and I am very glad you found the right combination of meds. It seems like for most people who benefit from prescription drugs there is some sort of trade off – cranky moods, weight gain, etc., but if they improve the quality of your life then I imagine they are worth it. That is all most of us with FM are trying to do, improve the quality of our day to day life. Keep up your sense of humor. I have found that to be one of my best coping mechanisms, the ability to laugh at myself. FH
Hi, again everyone! hope everyone is good?
Well, I may have found, a FREE, PURE, NATURAL, AMAZING, almost cure for fibro,,,almost,, I still have bad days, but VERY FEW of them now!
Have any of you ever heard of kefier grains? if you have than you should totally try a smoothie made with
1 cup frozen mango
1 banana
3 tbsp ground hemp {hemp powder} {protein source}
2 tsp bee pollen {local source}
16 oz of keifer, cultured for 24 hrs, then grains removed & and let sit in the jar, at room temp for another 24 hrs,, {increases the vitamin B & vitamin B6, as well as acidopholis{ vitaminB’s and acidopholis are a key component needed in fibros}, other friendly bacteria& yeasts. Anyways, I NEVER used to have ANY good days at all. But than I started drinking kefier smoothies for breakfast & lunch, just 3 days a week to start, and in the meantime, I had a few REALLY good days, could not figure out why, but than I figured out it was the days that I had the kefier!!! so go to dom”s kefier website for more information,,and how to find someone on there to mail you some grains free, but he has the most extensive website on kefier,,,,,, please for yourselves, and to spread the word, please try it!!! and good luck
Sorry fibrohaven, I did not know where else to put this,, I hope it helps everyone
gentle hugs kasha