Posts Tagged ‘Cognitive’

What *Is* a Flare Like?

October 26, 2021

This is very hard to explain as each one is different.

A flare can vary in duration, intensity, symptoms, triggers

A flare can last for a few hours, a few days, a few weeks, or even months.. Possibly years..

A flare can simply be a temporary exacerbation of symptoms that can be treated reasonably easily through medication and rest. A flare however can also be a debilitating excruciating exhausting with a skyrocketing increase in symptoms.

A flare could be pain, fatigue, insomnia, significant cognitive impairment, muscle spasms or charlie horses, IBS/IBD inflammation, exacerbation of sensitivities to food, smells, touch, less severe symptoms include body temperatures fluctuations, nausea, RLS, TMJ, dizziness/lightheadedness, costochondritis, headaches or migraines, numbness & paraesthesia

I am not including depression in this list despite the fact that many will think that yes this is part of a flare. For some it may be but for me my depression is not related to the fibromyalgia so much but the limitations of the flare in physical activity, mental stimulation and socialization.

With all the symptoms listed above a pain flare is different, day by day, hour by hour, trigger dependent and with various possible causes, intensity.

For example, one person might have issues with increased migraines and fatigue.. Another might have a flare in IBS/IBD symptoms, or muscular pain or cognitive issues. No 2 are ever alike.

The Fibromyalgia Letter

December 8, 2020

The Fibromyalgia Letter
~Author unknown

Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points – places on your body where slight pressure causes pain.

Myofascial Pain Syndrome is a chronic form of muscle pain. The pain of Myofascial Pain Syndrome centers around sensitive points in your muscles called trigger points. The trigger points in your muscles can be painful when touched. And the pain can spread throughout the affected muscle.

I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this, judgments are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.

I cannot show you a physically open wound to show how much pain I’m in. If I could you would take one look at that, tell me to sit right down, get me a pillow, offer me something to eat or drink and have that concerned and understanding look on your faces. However with Fibromyalgia, you will hear from many people that they would rather have a broken leg any day than suffer the kind of pain these disorders inflict. To me, a broken leg is even a poor example to compare suffering to these disorders and an insult to those of us with those disorders.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You won’t see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand….

You must see with your ears and your heart what your eyes cannot see. You must listen carefully to what I am telling you. What I describe to you may not make much sense to you and may be difficult for you to understand. Sometimes it may seem to you to be a different universe that I discuss. Know that it probably is. You don’t have to fully understand my universe and you cannot possibly. However hear my pain, listen for red flags always of any danger signals where you may need to help with added assistance. I like to call it “sending in the troops.” Anytime I do not seem in touch with reality.
Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die. You will hear many things from me that to you seem as easily resolvable. You may wonder why I make the same “wrong” decisions over and over again. Why haven’t I learned by this time? Why can’t I see the senselessness of my behaviour? I may seem to be getting my life together and them bottom out all over again.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.

What is happening here? Am I lazy, stupid, etc? Nope. My physical brain and body is very different than yours. I experience life different than the way you do. I feel different than you do. Most of my “friends” are gone; even members of my own family have abandoned me. I have been accused of “playing games” for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because of the burning and pain in my legs or arms and shoulders. The pain can be so intense that I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. Do I experience mood swings? If I am hurting I may be angry, sad, depressed, or any of the hundred moods in the world. I’ll never know what mood I will wake up with? I may treat you cruelly and say horrible things to you; I may ignore you completely, or cry on your shoulder unstopping when I’m in Fibro Flare. You may wonder what you said or did that made me this way. Well you did nothing it’s the Fibromyalgia and all its underlining factors causing this.

While the most predominant symptoms of fibromyalgia include widespread pain and persistent fatigue, the resulting cognitive impairment of this condition may be its most maddening. Commonly referred to as fibro fog, this symptom is a conglomeration of cognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia, not a psychological one. Just as no two individuals experience fibromyalgia in the same way, fibro fog also has a varying range of indications, including: Mental confusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or pay attention, and Language lapses.

This is why I feel like a child at times. Just the other day I put the eggs I bought at the store in the pantry, on the shelf, instead of in the refrigerator. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the keys, only to find them in the freezer. As I try to maintain my dignity the demon assaults me at every turn. I have a physical illness and it isn’t my fault and I didn’t ask for it I don’t want it and I don’t deserve it.

Occuring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person’s mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency.

Sleep, when it happens or restless and unrestorative

Sleep, when I do get some, it is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

Just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family and friends down again; and still they don’t understand.

On a brighter side I want you to know that I still have my sense of humour. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

All I ask is that you become educated about Fibromyalgia. I am someone in your life that suffers from Fibromyalgia. You may think you know everything there is to know about it, but there is more information out there than you think. It is more complicated then you think, and it is more life changing then you think.

Lend a helping hand. If you want to be helpful to someone with Fibromyalgia, just ask what you can do. Be flexible with invitations and plans that you have made. Understand that sometimes the pain of Fibromyalgia is overwhelming. Be active. Accompany them to a doctor’s appointment and take an active interest in their treatment. You can take notes at the doctor’s office and then review your notes together at home. Don’t take things personally. Some people with Fibromyalgia suffer from sudden mood changes. Try not to take these mood swings personally as they are part of the syndrome.

So you see, you and I are not that much different. I too have hopes, dreams, goals and this demon. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.

Thank you for spending your time with me today. I hope we can work through this thing, you and me. Please understand that I am just like you.

So I Need You To Please Understand Me

I don’t look sick

January 20, 2017

Five Things to Know About CFS

July 21, 2009

Five Things You Should Know About CFS
by Amanda Rinkel
May 7th, 2009

I’ve already kicked off International Chronic Fatigue Syndrome & Fibromyalgia Awareness Day on May 12 a little early with my post on Five Things You Should Know About Fibromyalgia, and I’ve returned with more information, but this time about the chronic illness Chronic Fatigue Syndrome. Once again, no hilarity, no breaking news stories, just some information I think you should know.

Five Things You Should Know About Chronic Fatigue Syndrome

1. The hallmark of Chronic Fatigue Syndrome is fatigue, but it isn’t “normal” fatigue. When a healthy person is tired, they can rest or sleep to relieve fatigue, but a person with CFS cannot. Sleep and rest don’t help and activity can make the exhaustion worse.

2. Up to 75 percent of patients with Chronic Fatigue Syndrome potentially have or have been diagnosed with Fibromyalgia as well. That is up to 3 million people.

3. There are 4,000 confirmed abnormalities between a CFS patient and a healthy individual, yet none of these abnormalities have been identified as a cause or as a diagnostic marker.

4. 1-4 million people in the United States have CFS yet only 20 percent have been properly diagnosed with the illness and are receiving the proper treatment.

5. Chronic Fatigue Syndrome has been said to be as functionally disabling as Multiple Sclerosis, AIDS, End-stage Renal Disease and Chronic Obstructive Pulmonary Disease.

To learn more check out www.wamcare.org.

Soource: blog.su-spectator.com

Five Things to Know About Fibromyalgia

July 21, 2009

Five Things You Should Know About Fibromyalgia
by Amanda Rinkel
May 5th, 2009

International Chronic Fatigue Syndrome & Fibromyalgia Awareness Day is next week on May 12th. I’m going to take a break from articles on internet wastes of time, movie reviews and news updates. Instead I’m going to take a moment to highlight these illnesses and the necessity for awareness.

Five Things You Should Know About Fibromyalgia

1. 3-8 million people in the United States have Fibromyalgia and up to 80% are women.

2. Fibromyalgia most commonly hits between the ages of 20-40 years old, at the “prime of life.”

3. It has been nick-named “the pain disease” because of the characteristic wide-spread, migrating body pain patients have. The pain has been described differently by each patient from dull aches to deep bone pain to burning, tearing, singeing, stabbing or shooting. The breadth of pain descriptions is what makes diagnosis difficult.

4. People with Fibromyalgia have cognitive difficulties, such as memory problems and attention issues, that has been nicknamed “Fibro fog” or “brain fog.”

5. Fibromyalgia is considered as functionally disabling as rheumatoid arthritis but is much less accepted and recognized by both the medical establishment, Social Security and the community at large.

To learn more check out www.fmsaware.org.

Soource: blog.su-spectator.com

What do I do?

May 30, 2009

For my fibromyalgia, I currently take the following Medications/supplements

  • Multi-vitamin – Naturapathy Dr does not recommend Centrum or most pharmacy brand multi’s
  • Calcium & Magnesium with vitamin D – Calcium cuz Women with Endo are more susceptible to Osteoporosis. Mg & D to help absorb the Calcium. The Magnesium also to help with muscle spasms & charlie horses. I have found that it has helped.
  • Fish oils – Generic fish oils, minimum 1000mg a day .. Well, I try to. Naturapathy Dr recommended 1000mg-3000mg daily of the EPA+DHA to help with mental acuity. I’m still waiting for the fog to lift, but I’m not usually getting enough to impact because I fog up & forget.. Lovely catch 22 there.
  • B complex to help with stress and ensure that I get enough B’s. No, I don’t take a stress formula. Just a normal B complex.. either 50mg or 100mg
  • Codeine Contin for maintenance pain.
  • Tylenol #3 for breakthrough pain
  • Oxycodone for severe breakthrough pain
  • Flexeril (Cyclobenzaprine) as a muscle relaxer. I find it better than anything OTC..
  • Probiotics to help regulate my digestive track – it works, ‘cept when I have an IBS flare or food sensitivity
  • NSAID, but it’s for my Endometriosis, so I don’t really know if it does impact my FMS or not.

For my fibromyalgia, I currently participate in the following exercise:

  • Aqua-fit, really carefully – I’m just getting back into exercise, so I am trying to get to the gentle classes. My local YMCA gym has a class or arthritics and for osteoporosis. Aqua-fit is a good choice because of the buoyancy of the water, it doesn’t impact my knees, and it’s a gentle cardio
  • Seriously, right now that’s it. I need access to a hot tub to do further exercise to keep my body warm.

For my fibromyalgia, I intend to return to the following exercises:

  • Yoga with the hot tub – Yoga provides gentle stretching while working on core strength and balance. The hot tub helps to keep muscles relaxed afterward.
  • Keeping up with Aqua-fit – see above 🙂
  • Walking the track to music with the hot tub – I got into walking when my nieces were born, walking with my sister. After I joined the Y and my nephew was born, I would take him in his stroller to walk him around the track. He’s too old now, but I have found it enjoyable with my MP3 player (or CD player back then). I sometimes dance a little bit and my pace changes with the music I’m listening to. It’s hard to overexert myself. 🙂 The hot tub helps to keep muscles relaxed afterward.

A benefit from the exercise is that I tend to be tired out afterward and relaxed. This makes evening workouts ideal in that I go home, go straight to bed and will sleep well, with a decent amount of healing rest. This improves me, physically, emotionally and mentally for the next day.

For my fibromyalgia. my spiritual side is limited. I don’t go to church often, however I do find solace in my home church’s sanctuary. I’ve moved away from my home church and have yet to try out the sanctuary here. I also find the same ‘state of grace’ from music, especially my churchy music 🙂

For my fibromyalgia, because of my physical limitation, I am limited socially. Most of my social interaction is via the internet on Twitter, Facebook, Email, etc.. The alternative to that in real life is with my SO and his friends. Most of my friends no longer talk to me, or are too far away for more than email. The classes as the Y present a new socialization source, which I hope to be helpful. With the improvement of my health I would like to return to scouting in some sort of part-time or limited capacity.

For my fibromyalgia and my cognitive abilities, I am starting this blog. It will help keep me thinking and requires research. It also provides a creative outlet. I also enjoy doing word searches and have, on recommendation on my therapist, started to colour and have other crafts options available to me.

For my fibromyalgia and an emotional aspect, I have a councilor and have been placed on anti-depressants. While my time with her is limited I do find that I feel better after I speak with her. Additionally I have the support with my SO. While sometimes he can not understand and becomes frustrated, I know he only has best intentions where I am concerned.

How do I cope? Not well. Other than the limited exercise mentioned above, the odd screaming match and the rarer still church visit, I have no real outlets.. Which sucks. Before I got sick, my outlets for frustration and anger and stress were physical. With the fibro, I have lost that. Any suggestions are welcome 🙂