I will apologize right away for the length of this blog. I've been coming back to the draft for days trying to cut out things but everything is important to "me".
Since my post in September where I open myself to ridicule of telling how saddened I am to have it confirmed I have Fibromyalgia(FM) I've done a lot of research. More intense research than when he first starting talking to me about it years ago. Then, I was reading all medical sites like WebMD, The MayoClinic, Wikipedia and Ask.com. There were more but these are the ones you would recognize. Since September I've been on a different search. Reading from patients mouths, hearts and minds.
Never in all my years of dealing with my numerous aches and pains; back, muscles and joints have I felt so vindicated by strangers. Every blog or article I read was exactly how I've felt and feel. FM patients are good at hiding their pain for fear of ridicule. As I mentioned over a year ago even a doctor I worked for thought FM patients are just crazy and that's the title the doctor gives them because they can't find anything else to diagnose. That is so far from the truth. Our pain is real.
You don't walk into your rheumatologists office and have them diagnose you with FM in one visit or even one year. I write this post to share with you a few bits and pieces that were important to me. Important because it validates everything I have tried to understand over the past years. Why do I hurt everywhere? Why am I so tired all the time? Why can't I sleep? Why is it so much worse when I first get up in the morning? All this time I've been looking to my doctors for answers when others who feel just like me had all the answers.
I remember searching to see if someone with a Spinal cord Stimulator had a blog. I found a few. Reading them inspired me to write, even if no one read. It made me fill like I would get things off my chest. Now I am searching through so many more Fibromyalgia blogs than I ever thought I'd see. I believe I read 1 in 20 people have FM. Every definition down to the detail is how I am feeling and felt for a long time. To some, it would have made them more depressed. For me it has been encouraging. This blog world is my support. Not to say my family and friends are not, but your still tend to doubt even if the people you love understand.
I can be fine one day and another I can do something that is simple for most people. After I am done I really to tired to do anything else. My husband struggles with this. When I say I am so tired he wants to know why?
One thing I read in common was how no matter how much pain or how bad of a day a blogger was having they made their self exercise if they could possibly do it. I've read walking and swimming are two of the best exercises for FM. A plus since they are great for my back also. The problem is I'm doing very little walking these days but not because I don't want to. For some reason when I'm hurting I can tolerate my recumbent bike much better. If I stop moving I will become so stiff the end result will be bad.
Exercise is very important for anyone, but especially if your dealing with chronic pain. Chronic pain = depression + FM = depression + exercise = accomplishment. On the other side of that coin I'm learning to say no, to go lay down if I need to and not let the undone things bother me so much.
At my OT appointment on Tuesday the PT did some dry needling for me on my triceps and the muscle where it meets the tendon near elbow. It wasn't that bad compared to procedures I've been through previously. It was by no means comfortable though. It's to soon to tell how much it has helped. The swelling is down to an inch now so that is definite improvement. I go back Friday and she will re evaluate everything and write my notes for my rheumatologist on our progress. I can't help but wonder if the FM has exacerbated the whole experience.
Below are some pieces I mentioned in the beginning. If you have FM you know all about it. If you don't, you may know someone who does and it will help you have a better understanding what their day to day life is like. I think we all want empathy not sympathy.
From Scope- an award winning medical blog
I can’t imagine anyone relishing the idea of being tired, in pain, or suffering from “brain fog” for one day, let alone for months or years. If you have fibromyalgia, this is what you experience on a regular basis. Yet there are people who believe that fibromyalgia doesn’t exist – that it’s a made-up disease with the purpose of appeasing patients, giving their complaints a name.
Incidences of muscle pains characteristic of modern-day fibromyalgia have been documented for centuries, but only in the 1970s did the disease begin receiving serious attention as physicians began to better identify trigger points, inflammation, and fibromyalgia-associated issues such as sleep disorders and irritable bowel. And only in 1987 did the American Medical Association recognize fibromyalgia as “an emerging condition.” But saying it’s a disease and convincing non-believers are two different things.
I’ve been asked what it’s like to have fibromyalgia and, just as it’s difficult to diagnose, it’s difficult to explain. Although I was only diagnosed a few years ago, I can trace the symptoms to my teens. I often experienced unexplained bouts of exhaustion and pain. I never slept well. I had other fibromyalgia-related physical issues, but no one could figure out what was wrong. After a while, I began to believe that it was all in my head. I knew I felt the pain, but there was no explanation. I knew I was exhausted, but everyone is tired – why would I be any different? The other symptoms? I was overplaying them, complaining too much, imagining them, looking for attention, wasn’t I?
My family and close friends were (and still are) wonderful. They never made me believe that I shouldn’t be feeling what I was experiencing. They tolerated my quirks, such as the hypersensitivity that results in a very strong startle reflex and not being able to stand the feel of certain things against my skin. (It wouldn’t surprise me if the princess in fairy tale The Princess and the Pea had fibromyalgia!) My husband, my children, my friends, all helped me when the pain was bad and the exhaustion overwhelming. But feeling so different and not knowing why take a toll on a person.
I did what many with fibromyalgia do. I withdrew into myself. By withdrawing, you minimize your chances of being criticized or attacked by those who don’t understand your “nonexistent” illness. But at the same time, because you are internalizing everything, your symptoms become worse. Your mind plays more games. And the cycle continues.
I cried when my rheumatologist told me I had fibromyalgia. I told him I wasn’t crying because I had it, I was crying because I finally had validation – that this was real. My pain was real. My illness was real. He told me that many patients react the same way. How sad.
A year ago, I began a project called 101 Questions About Fibromyalgia. I asked friends and colleagues for questions, either from the point of view of having fibromyalgia or loving someone who does. I received some great questions but I also received a long e-mail from an editor whom I had never met. Her angry e-mail outlined exactly why fibromyalgia doesn’t exist, point for point, but she also told me that if having a name for my illness made me feel better about myself, then it was OK with her.
This is why many people with fibromyalgia don’t speak out. There is no such anger against people who say they have diabetes or cancer or Crohn’s disease – but it’s acceptable to brush off, deny, or criticize a claim that you have fibromyalgia.
Living with any invisible illness can be difficult. Living with one that still is not accepted by many is so much harder.
Marijke Vroomen Durning, RN, is a health writer based in Montreal, Canada. She is a contributor at Forbes.com, HealthDay News, and other outlets. Find her on Twitter @MarijkeD.
Fibromyalgia is a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety. (National Library of Medicine)
COPING:
Fibromyalgia is a persistent condition for which there is no cure. It is common for symptoms of fibromyalgia to wax and wane; they may be more severe at certain times of the day, month, or year and they may remit for an extended period of time only to reappear later either for no apparent reason or following a traumatic event such as an automobile accident. But there are ways of coping with fibromyalgia symptoms and preventing exacerbation of pain. Here are some tips:
- Prioritize sleep – it is important for people with fibromyalgia to maintain a regular sleep schedule and to get treatment for sleep disorders if necessary.
- Create a quiet environment –chronic pain has been known to intensify in the presence of sound stress.
- Exercise – regular exercise is known to improve symptoms in some patients. For people with fibromyalgia, low-impact activities such as walking, yoga or swimming are the best choice.
- Medication – work with a physician to develop an effective medication regime.
- Massage – gentle massage, deep breathing, and relaxation techniques are all generally considered beneficial with respect to chronic pain management.
SYMPTOMS:
Fibromyalgia usually includes a broad range of symptoms including some combination of the following:
- widespread pain
- sleep disturbances
- chronic daytime fatigue
- morning stiffness in the joints and muscles
- migraine headaches
- irritable bowel syndrome
- painful menstrual periods
- numbness or tingling of the extremities
- restless legs syndrome
- temperature sensitivity
- dizziness and balance problems
- cognitive and memory problems
- mood disturbance such as depression and anxiety
Out of these 13 symptoms I have experienced 10 of them. 2 were in the past and much better but I still wonder? (irritable bowel syndrome and painful menstrual periods) The others are just like the COPING definition. As bad as I hated having Dr. C tell me this news it feels good to understand what is happening to my body. A lot of these symptoms I have never shared fearing people will just think I'm crazy. Temperature sensitivity...oh I definitely deal with that. Off the scale. Ask my husband or my daughter. The last one has been chronic for some time now,(especially the anxiety), but I've convinced myself it was due to my back pain. My doctors agree, except for Dr. C. My pain management doctor is the one who had me try two different medications that are commonly used for patients with FM. (Cymbalta and Savalla) Unfortunately neither worked. He never used the title he was just responding to my complaints of hurting everywhere.
When Marijke spoke of not being able to stand certain things against her skin I almost jumped out of mine. I never discuss that with anyone. My husband has heard it a lot but even he gives me the strangest looks. There are times that I can't be in the same bed with him because he has PLM and if his leg is moving I'm so sensitive to it I have to move!
The last I'd like to say, you know I mean for today, is that my mom has Fibromyalgia and Restless Leg Syndrome. The National Sleep foundation has written that there may be an association between FM and RLS. It's most common (RLS) in patients with FM and those with Rheumatoid Arthritis and she has both. So what am I crying about? The NSF also states that FM seems to run in the family though not knowing if genetic or environmental. I have and continue to pray for both of my children that they don't start experiencing symptoms. One of the hardest things of dealing with it is getting answers.
To my friends and family, thank you for putting up with me. I know you often wonder why I back out or just don't feel like it so many times. Your no need to know attitude has carried me far.
I have the greatest husband any one could ask for. Even he struggles to live with the depression and anxiety with me. You see I'm really good at acting. When I do go out, I fall apart when I come home and he catches me every time.
Lots of genuine hugs and H.O.P.E. to everyone dealing with this invisible illness. Theresa
HOPE looks for the good in people instead of harping on the worst in them.
HOPE opens doors where despair closes them.
HOPE discovers what can be done instead of grumbling about what cannot be done.
HOPE "lights a candle" instead of "cursing the darkness"
HOPE regards problems, small or large, as opportunities.
HOPE cherishes no illusions, nor does it yield to cynicism.
Author unknown
