Alone with Fibromyalgia

[Marie219]

Hello ! I am Marie and I joined the Forums just last night. I have been suffering from Fibromyalgia in silence for five years. People with whom I live do not understand and do not want to understand; they do not know and do not want to know. When they complain of me if I say to them that I have Fibromyalgia, they say that Fibromyalgia is nothing, many people have this, and they can do everything, they go out to work, they come back to do house work and they have children, they function like everybody, and so they want me to do the cooking, washing and cleaning...... like the others. But I am always tired, lacking of strength, sometimes, I can hardly pick up my pillow because it is painful for my hands and fingers. For this reason, I use the lightest blanket at night. At home, I would not mention that I have Fibromyalgia so as not to hear any criticism.

 

[Nick]

Hello, Marie! Nice to meet you. I’m sorry to hear that you haven’t had for so many years anyone around you, who could understand how challenging it can be to live with fibromyalgia. I know people can be sometimes really insensitive and ignorant when they’re talking to a person with a chronic illness, syndrome, or condition. People may think you’re just making excuses when you’re actually telling them the truth.

Fibromyalgia seems to be often like an invisible enemy constantly causing loads of trouble and pain in our bodies, with frequent exacerbation of the symptoms, in the form of flares. Fibromyalgia can be very debilitating, both physically and mentally. Sadly, people without any severe, chronic health problems tend to believe in the existence and severity of conditions like fibromyalgia only if they can see or feel the most severe symptoms of the condition themselves. I hope you’ll be given all the support you need and that you’ll feel at home on this forum occasionally swarming with and frequently visited by many fellow fibromyalgia sufferers!

 

[Marie219]

Re: Fibromyalgia and post traumatic symptoms

Thank you so much Nick for your support and kindness, this is the first time I receive such understanding and encouragement for my Fibromyalgia. Actually, I wanted to join some group or forum long time ago but my hesitation prevented me from doing so until now I really feel the need.
Two and a half years ago, something horrible happened to me, I was so shocked and scared that I fainted. Several months later, I started to experience post traumatic symptoms, namely, fear, anxiety and poor sleep especially when some people trigger my symptoms. Aside from daily struggling with my Fibromyalgia pain and fatique, I am now making efforts to be strong, to fight against fear. Sometimes I get confused because both Fibromyalgia and post traumatic symptoms can cause anxiety, fear and poor sleep. I want to be strong so as not to have fear no matter what happens.

 

[Nick]

I’m sorry to hear about your traumatic experience. Anxiety and fear combined with poor quality of sleep are definitely things that can make it more difficult to survive from your everyday life with fibromyalgia. Chronic pain and changes in the functioning of the brain decrease the quality of your sleep and you may find it harder to fall asleep as well. Anxiety causes overactivity in your brain when your body should get some rest, and your worries and your brain refusing to slow down a bit may keep you awake for hours before you finally fall asleep. In the morning, you may feel like you haven’t slept at all. Thankfully, there are usually also nights during which you can sleep relatively well, although you will still feel the fatigue in the morning and during the day. Sometimes, going out for a walk late in the evening helps me sleep better.

I know how anxiety feels like since I’ve suffered from social anxiety for the last seven and a half years. In my case, the disorder was probably triggered initially by some bad experiences and a couple of threatening incidents at work. Nowadays, I try to get myself more involved in social activities, but I still find it rather difficult to participate in any social events because I can feel the anxiety increasing by just the thought of a gathering of a lot of people in one place.

I admire your determination when you say you want to be stronger and that you want to face all your fears bravely. I wish I could do that as well. Often, I don’t have the courage to face my fears. I’ll keep trying, though. I hope you’ll be able to overcome your fears and that you’ll feel more comfortable and stronger both mentally and physically.

 

[Marie219]

Thank you so much for your explanation regarding sleep; as you say, taking a walk in the evening helps me sleep better. I have many dreams almost every night, often times they are bad dreams or even scary dreams that fill me with anxiety. And I wake up with tiredness because of dreaming too much. Is this a symptom of Fibromyalgia or post traumatic?

I do not want to have fear at all, it is a suffering. Since I am weak and easy to have this symptom when it is triggered, it is necessary for me, in my situation, to overcome it so that I can have the strength to speak the truth and to do what is right in my working environment. When I have fear, I try to focus on something else, doing something to distract myself or telling somebody about it if I can find this somebody, these are helpful means to release my symptom.

 

[Nick]

People with PTSD see bad dreams relatively often, because their brain tries to process the emotions and memories related to the traumatic experience that triggered the PTSD initially. There has been no clear evidence of consistent changes in the duration of the REM sleep (the sleep stage during which we see dreams) in PTSD patients, but it has been shown that the REM sleep is often fragmented, so it may feel like you’re dreaming a lot. Also, if you’re seeing a bad dream and you wake up abruptly because of the dream, you will usually remember that you saw a dream and you’ll also remember what you saw in the dream.

Most of the people with fibromyalgia suffer from chronic sleep disturbances. The poor quality of sleep is mostly caused by sudden interruptions of the deep stage of the non-REM sleep, which causes decreased total duration of deep sleep that is the stage of sleep that is needed in adequate amounts for optimal recovery of the whole body (including the brain). Thus, the lack of deep sleep causes chronic fatigue, increases the pain felt in the muscles, and it may also increase forgetfulness and cause difficulties with concentration and learning.

 

[Marie219]

Thank you ever so much for your time and patience in explaining about different stages of sleep and how poor sleep affects our mind and body and makes Fibromyalgia worse; I find it very interesting. In fact, I have all the symptoms that you mentioned: tiredness, muscle pain, forgetfulness and, sometimes, difficulties with concentration. Almost every night I wake up about every two hours, I think this is caused by Fibromyalgia.

The year before last, at the time when I first experienced PTSD, my family doctor sent me to have a sleeping test, and the result was: central sleep apnea. That means, there are moments that my brain did not command me to breathe. In this case the sleep apnea machine will not be helpful. I wonder whether central sleep apnea has any connection with the poor sleep in Fibromyalgia or it is affected by PTSD.

 

[Nick]

My pleasure. It has been shown that fibromyalgia is linked to obstructive sleep apnea and PTSD, and obstructive sleep apnea is commonly diagnosed among people with PTSD, but based on our current knowledge, we can only speculate on the link between central sleep apnea and fibromyalgia or PTSD. Personally, I believe fibromyalgia and PTSD may at least worsen the symptoms of central sleep apnea because all of these three conditions (alone or combined with some other condition) can cause many similar symptoms, including chronic tiredness, forgetfulness, difficulties with concentration, insomnia, and waking up several times a night.

Finding a helpful treatment for patients with central sleep apnea can be really challenging because there are numerous possible causes of the condition, and sometimes the cause of central sleep apnea can stay unknown. I hope there will be some treatment that can help you cope with central sleep apnea.

 

[Marie219]

Thank you so much again for your explanation which I always find interesting and useful.

The sleeping test doctor asked me to do the test for a second time but I do not like the idea; I just don't like the test because I couldn't sleep for almost the whole night during my first test, it was quite a negative experience for me. Next morning, when I returned home, I had to wash my hair, so sticky !

Instead, I chose to go to an elderly doctor who is already semi-retired. He told me that nobody would die of sleep apnea; with this, I feel at peace. Then, I tell my acupuncturist about this problem, she put some needles to my head, forehead.... etc, she said those needles would help me sleep better. Soon I started to feel sleepy and drowsy and went to bed. When I got up, I felt rested.

Ever since I was diagnosed with Fibromyalgia, I have never taken any medication because I am afraid of side effects. I bear the pain and the rest of the symptoms and go for acupuncture.

In my first year of Fibromyalgia, once, I had a very terrible fibromyalgia flare up, and it was winter time. My whole body was extremely painful and completely stiff that I was exactly like a statue, without exaggeration, for there was no part of my body that could move an inch. In that condition, I was not able to sleep at all. My sister gave me a video - cartoon to watch for the night. It helped me a little bit because it distracted me and this lessened my feeling of the terrible pain and stiffness. That night was the only time in my five years of fibromyalgia that I was given four Tylenol for Fibromyalgia, so that I was able to get out of my bed next morning and they took me to the doctor for acupressure. The doctor burned the herb, I think it was called mocca (not sure of the name), and let the smoke penetrated my body. then I was fine.

 

[Nick]

I’m happy to hear that you’ve been able to sleep better after the acupuncture treatment. Maybe I should try acupuncture as well! Can’t hurt to try (except for the needles ).

I completely understand, why you don’t feel like going to the sleep test for a second time. It can be difficult to relax and fall asleep when you know that your sleep is being monitored for the whole night. Also, the paste, that’s used for a better contact between the electrodes and the skin, can be annoying. Still, if you change your mind, or if your doctor strongly recommends it, you can go to the sleep test again.

This week, I believe it was Tuesday (might’ve been as well Wednesday ), I visited my local pharmacy because I needed to buy some painkillers, antihistamines, and vitamins. Right before I entered the pharmacy, I was able to remember what I wanted to buy, but only ten seconds later I had forgotten what I was supposed to buy.

It was quite a comical situation, me standing there, thinking out loud, trying to remember the names of the medicaments and vitamins that I use. I was a little embarrassed by the moment of confusion and forgetfulness, but also slightly amused. I greeted the pharmacist, and said “I’d like to buy…”. Then, I had a total blackout, during which I stammered something like “What was it I wanted to buy?” It took me 1-2 minutes to remember the names of the products. They came back to my mind one by one, after making a real effort to remember them.

I find it fantastic that acupuncture has helped to relieve your pain and other symptoms of fibromyalgia. I use some medicaments, but I try to find the smallest effective doses needed for pain relief and for coping with my other symptoms.

I think medicaments can be helpful, but it’s true that they can also have many side effects. It’s good to remember that it depends on the person, which medicament helps them because every person is unique, with a unique metabolism and anatomy. I try to improve my eating habits and increase the time and quality of daily physical exercise, so that I won’t have to use that many different meds. I feel like I’ve had better results with a healthy, balanced diet and regular physical exercise than with any medicament.

The flare up you had during your first year of fibromyalgia sounds horrible! I’m so glad your sister was there for you and that Tylenol and the herb treatment were effective.

 

[AndreaB]

Hello, Marie. You have my middle name I started here today and i want to let you know you're not alone. Thank you for sharing your story. I feel the same as you. I am completely alone and feel helpless.

As far as i can tell fibro is not recognized where i live. I can't get reasonable accommodations at work. My boss says i don't look sick and won't give me any leeway or flexibility. For years my doctor said it was my imagination because my tests all came out perfectly. 7 years into it, i was finally diagnosed. I thought I'd get help or it would prove something to back off my evil boss, but being diagnosed with fibro seems to have only put me into a basket where the doctor says there is nothing to be done about it. I've been to so many now. My state doesnt recognize fibro as a disability so, as far as i know, there is nothing to do but trudge painfully through each day and try to survive. I've decided I'll keep working until i fall out of my chair because i don't have any other choice.

My partner doesn't believe fibro. He thinks I'm lazy and making excuses. Believe me when i say he is NOT well pleased at my lack of function. But he sees it as me choosing to shirk my responsibilities. I do what i can, but as you know, you have to pick and choose your priorities based on pain and exhaustion.

It's a lonely place where society, doctors, workplace, family, and friends see you as lazy and complaining as every day I'm scrabbling by my fingernails to continue to function at all. I'm so grateful that, at this point, I'm still able to work.

I hope you get help, hope, and answers here. You can talk to me, if you feel like it.

Hugs,

Andrea

 

[Marie219]

Hello, Nick, thank you so much for all your sharing and explanation, as always, I find them very interesting. When it comes to forgetfulness, recently, I am quite forgetful. From time to time, I was surprise to see on my table certain objects which I thought I had put them away already. And I always forget to take the supplements. Right after I have read the song number from the board, within a minute or two, when I open the song book, I forget the number. There are moments that I have difficulty to concentrate. Is there any difference between forgetfulness and brain fog? Do I have only forgetfulness or also brain fog sometimes?

I believe there are natural help to reverse chronic pain. I find it interesting the Pain Gate Theory which proposes that when pain signals travel to the brain, they pass the pain gate that can be closed by different factors, among those means I find distraction, pleasing sights and music, exercise, positive attitude and pleasant thoughts, acupuncture are useful.

In the past, there was a few times, I was invited to attend the gathering of a group, most of the people who went there had some ailments. A person played the guitar, the rest of the group sang together happily and clapped their hands, they did some short readings in between. After two hours, most of the people came out to give their testimony that they had no more pain. To tell the truth, my pain was gone too at that moment, I felt as if I had no more Fibromyalgia.

 

[Marie219]

Welcome to the Forum, Andrea !

Thank you so much for sharing with me and the members of this forum your experience of loneliness and not being understood by the others. We have gone through very similar sufferings because of our Fibromyalgia. I understand how you feel when you encounter criticism which happens to me if I dare mention about my Fibromyalgia to the others. My superior is the first one who says to me that Fibromyalgia is nothing; and they expect me to be like the others in everything. I do not tell them my symptoms because I do not want to be labelled as this would be more painful for me than Fibromyalgia.

I really admire your determination and all the efforts you make, I know you are doing your best in the midst of pain and fatigue. I understand you and wish you feeling better and better each day !

 

[Nick]

Hello, Marie! I think that brain fog causes mainly difficulties with the short-term memory (called also the working memory) and concentration. On the other hand, brain fog can also prevent you from remembering things or from maintaining a bright mind when you’re in a stressful situation (for example when you’re taking an exam, or when you have to defend yourself against some criticism coming from people who don’t understand what you’re going through).

So, brain fog can cause forgetfulness by preventing you from finding the right words from your memory (either short- or long-term memory, depending on the situation). Sometimes, forgetfulness isn’t necessarily directly connected with brain fog, but rather with some other factors causing difficulties with learning and preserving things in the short- or long-term memory. Forgetfulness can be partly caused by lack of good-quality sleep, and you may also have more frequent moments of brain fog if your sleep is not letting your brain recover well enough at night.

I think the pain gate theory is quite interesting. The theory sounds logical to me, so I believe it can partly explain, why for example the positive energy around us and a pleasant atmosphere can relieve the pain. I believe the distraction that you mentioned is playing a key role in the mechanism of decreasing the pain. When your brain is busy with processing the emotions created by moments of joy (for example when you see someone you just helped being so happy), or by the beautiful environment (when walking in the nature), or when there are a plenty of other positive distractions, such as singing, music, or movements of your body (for example when dancing or playing basketball), the impulses coming from the pain receptors may either be blocked at the gates (that are often called synapses), or more commonly they may reach the brain, but your positive feelings beat the negative feelings caused by the pain.

 

[Tfreeny]

Re: Fibromyalgia and post traumatic symptoms

I understand everything you are going through Marie! I am also new here, and learning to cope with fibromyalgia. I also am being treated for generalized anxiety disorder and depression. My doctors have changed my antidepressant to Limotrigine, as a mood stabilizer with some help for pain. I am also taking Gabapentin for pain, and klonopin as needed for anxiety. I have just finished the withdrawal symptoms of stopping Effexor, after taking 300mg/day of that for 3 years. This was for major depression. But I was in such pain, and my doctor would just say it’s arthritis, take ibuprofen. The pain caused depression and fatigue! With the new meds I feel more like myself again. the pain is still a problem, but at least now I have energy and a personality again! My point is that you are not alone!