I am both busy doing small crafting gifts and putting together packages for the homeless these next two weeks. I am also experiencing a lot of extra pain from both the extreme cold and the activity. I will post new, relevant blogs as I am able to. In the meantime, please explore the archived posts; there is hundreds, all with great information. I hope this at any rate.
Happy Holiday Season to All! XX
I am so very weary of having therapists, doctors, and medicine (alternative and complimentary) “cures” disguised as a peer offering us their assistance. I need more than both hands and feet to count the number of these I have seen since being diagnosed. I understand that some people have been helped or even claim they used one of these methods to rid themselves of Fibromyalgia. Most people I have encountered on forums galore, blogs, and Facebook pages have not been helped by these methods. And, most are sick and tired of these claims. I, am one who has no use for them.
It makes me angry that they aren’t upfront with their intentions to sell a product. It makes me angry that they say they had Fibromyalgia and now do not. Why? I and thousands of others don’t believe them. Some have tried them. Some, like me, have researched them and found them to be bogus. I am angry because if, if, it was a cure then we would not have this syndrome anymore! As you all are aware of by now, I am the first to be skeptical of Big Pharma curing us with their approved medication usages for us that began as a medication for seizures or depression; if I found an alternative that really worked, I would jump on it.
When I had abnormal trigeminal nerve pain, several years prior to developing the fibro syndrome, I went to UCSF and was a guinea pig for experimental cures. These were horrible. One injection caused my entire right side of my face to droop like I had just experienced a stroke, for hours. It stopped the pain. I also had IV drip lidocaine put into my entire body. These experiments later went on to be used in trigger point injections. The research I helped them gather became useful to people like us. It never helped me; scared the heck out of me though.
My Peers. There are legitimate research studies out there, that lead to procedures and processes that really do assist us. I was in a very tight monetary situation when I participated. The medical community did not know how to help this condition. I volunteered and it helped others years later. There are research studies being performed at hospitals and universities that you can find on the internet. You can read about them and decide if you wish to proceed further. I fully support this action. But, please, don’t spend money you don’t have on items that just don’t sound quite right. I know we are often desperate to stop the pain. Be proactive. Protect yourself.
From one old-timer to new and oldies, if you stumble on a suggestion that turns out to be an advertisement, let the moderator know. Help your fellow Peers save themselves from hope that crashes them right back into anguish.
Headache Research/Help Site; Fibromyalgia has chronic headaches and co-occuring migraines
Government site Research of Fibromylagia and Comorbid Conditions; Excluding psychological Conditions
Just a quick post to address a social media magazine’s article today. This magazine listed our symptoms as including migraines, anxiety, and depression. I must say that this was very disturbing to me! While depression can be a comorbid condition, it is not a general condition of fibromyalgia. I have not read, in any research, that anxiety is a common comorbid occurrence. Migraines are an entirely different type of headache from the type we experience.
None of this is to say that comorbid conditions do not exist; they do. I just blogged about co-occurring conditions yesterday. I have fought the stigma that fibromyalgia is a psychological condition for years, so too have many of my Peers. I feel strongly that the magazine, who claims to be advocating for disabilities, should retract this from their article. What do you think?
Several, but not all, Related Medical Issues That are not Fibromyalgia; Research
The above link is from research done in 2015. It is very useful when we are trying to discuss our medical issues with our doctors.
6 Steps to Help You Take Control of Your Relationship with Your Doctor When You are Experiencing “other” Medical Symptoms
This is a “must read”!
I recently wrote a post about doctors lumping all our complaints together once we are diagnosed with Fibromyalgia. After receiving a comment from a kind lady yesterday, this issue haunted me again. It inspired the first research posted, which then lead me to find the wonderful and helpful tips of how to have a fruitful conversation with your doctor about other symptoms. Being empowered to talk with our doctors without fear is very important; I blog about this often.
I don’t think I could offer better advice then the two links above give to you. I will leave you to read through them, they are very easy to understand. As I leave you with them, I will stress that unless we take control of our health, we may lose more than we think. As we have already lost our first life, and learned to live with our new second life, please, let’s not start a third or fourth life.
I spent both Saturday and Sunday in pain, and, in bed. The first increase in pain was due to lifting a box that was too heavy for me. I have not done this in a very long (knowing that it is not something I am capable of doing). I was a at a reuse store and ran into an old friend. In the midst of our talking excitedly, I forgot about my toolkit and lifted the box up to the counter, then out to the car where it was took a bit of awkward moving to get it into the back seat. Sure enough, the next day, Saturday, I woke up with a strained arm, shoulder, and neck. The pain then began to radiate up my neck. I tried to get up and move through it, but within 10 minutes I was back in bed. The next day, Sunday, the pain was worse as the rain moved in. I now was in a full flare; pain scale level about a 7 1/2. It finally calmed down about 5pm.
This was an angry and sad time for me. I tried to practice appectance but had to remind myself several times throughout the weekend. I was upset at myself for not practicing my toolkit rules. I also knew that this was a good preview of the El Nino weather coming up. I am sorry to say that accepting this is not easy for me. I have become used to being somewhat in charge of my pain.
I posted research right before this post, for my Peers as well as for a reminder to myself that I have to start these exercises now, before El Nino comes in.
Wishing all of you a pain-free, or less pain, this week.
usq.gov NICH Research to use as your own guide
Happy Monday Peers,
I thought this would be a useful link for you to look at.
Research on Misdiagnosis of FM
Other Causes of Symptoms with or without Fibromyalgia
Happy December Peers!
I spend a few hours every day on the internet researching our syndrome, reading blogs about our syndrome, posts about it, and Peers questions. I am often saddened by my findings. I find people who have symptoms that seem so obviously to be “not” related to our syndrome, yet their doctor has told them it is a part of it. These people may have arthritis, MS, even brain problems like epilisy or just low blood pressure. They need educated doctors who can separate out pain from Fibromyalgia and other medical problems, but they don’t have one.
I have seen this lumping together of everything into chronic pain since I was first diagnosed. After 16 years of this, with all the new research on exactly what symptoms this syndrome causes, I would expect my Peers would be experiencing better healthcare. This is not the case, in fact it appears to be getting worse instead of better! My response to this serious problem is that we must educate ourselves and go into our doctors office armed with facts.
This is not something that we, as their patients, should have to do, but I feel we must. I read about people who are so dizzy they fall down when they get out of bed. Peers who have new symptoms like severe abdomen pain. They have a racing heart or no appetite. These are not part of chronic pain, at least not exactly and maybe completely separately.
Just because we have a chronic syndrome it doesn’t rule out acquiring diabetes, reacting oddly to a medication, heart conditions developing, arthritis and much more. Please, read my posted research links to discover what exactly Fibromyalgia is, or get on the Google bandwagon and read about it. Read about your other, new, symptoms. Take notes and bring them into the office. If your doctor refuses to consider any other cause, get another opionion. It could be lifesaving.
Today is a struggle. I slept very little and when I did finally fall asleep for three hours, I slept in a position that has left my neck in a flare of pain. Despite this pain I have important things that must be done today. Yesterday was also a day of needing to get out of the house and attend to the beginning of the month duties. This did not help with my flared pain today. If you are like me, going out and doing errands, driving, and dealing with stresses of pushing shopping carts, traffic, heck even just the weight of the steering wheel, can leave you in pain. Well, here I am without an out for today.
I am choosing to struggle. I could just give up and stay on the coach; believe me it would be much easier for me today. I instead am choosing to find my strength in my pain. You might ask me how is there any strength, any benefit to my suffering? This is a question I have to ask myself a few times a week. Sometimes I don’t really have any answer. Sometimes, I just give in and give up. Today, my answer is that if I go out and do these few errands, with this pain, I will beat Fibromyalgia at it’s own game! What a lovely idea, to be better than it.
I hope that we all can find our strength today.
Good Afternoon Peers,
I recently experienced a situation where a new friend appeared to me to be very compassionate, until they were not. I was shocked at the language that was used and felt very distressed by it. I was just discussing a neutral subject, at least that is what I thought at the time, and all of a sudden out came the claws of someone I had never seen before! I decided that for now, I need to protect myself and leave the entire budding relationship, alone.
I found out recently that in fact the person was experiencing their own compassion needs. But, did that give them the right to lash out at me? In my world of relationships, the answer is no. I am very undecided about if I will continue with this relationship as I believe simple communication is not that hard. If they were having a rough day of it, they could just say so.
This did bring up a good point for me to look at. Just as I have needs for care and compassion, so do my friends and family. I need to be involved in give and take in relationships and realize that people have their own lives. Now, I do realize this. But perhaps some people are not very good about telling others that they need care. Especially those who give and give.
It’s called “compassion fatigue” in professional helping careers, and, I will use it to explain friends and family who are constantly giving but not allowing the receiving. This post is a word of caution about fatigue and relationships. I intend to be more careful about who I let in that is giving to me, caring for me, and aiding in compassion. And, in return, I will remember to never take those who give to me for granted. I hope that those who are near and dear to me will always tell me when they have a need or if they need to take some time to themselves.
Until tomorrow, kind hopes.
2013 Research on 41 Participants with Fibromyalgia Found Smaller Nerve Bundles at the Periphery of Body
I thought this was interesting. As the article states about this research, it does not explain all the symptoms, but, it may have some merit. It also discusses an immune or pathology cause not yet found. And, of course, it brings back the chicken and egg question; personality types and psychological affected reasons. Despite this aspect of the questioning by the authors, give it a read.
I messaged a peer about keeping positive as fibromyalgia is not progressive; doesn’t lead to being wheelchair bound for instance. I received a message from another peer that she is somewhat wheelchair bound due to small peripherary nerve pain. This took me back to this quick post and I posted another, similar, article in response to her, with my sympathies. While this is an interesting find, it was researched in peers ages 46 and above. It also does not account for other symptoms, like brain fog, fatigue and more.
What is heartening is that research is continueing to be done, searching for the answer as to why fibromyalgia exsists. I am not convinced that this is a part of our syndrome. I believe it is yet another medical issue that co-occurs with our syndrome; often overlooked by doctors and lumped as one issue, fibro. I am convinced that our syndrome is an autoimmune system disorder. I ponder if having one autoimmune disorder brings on others? I wish doctors knew what we had, knew how best to treat it, and even how to rid of us of it entirely. Treating symptoms is not ridding us of the pain.
I remind myself that we would be treating symptoms if we had diabetes or heart disease and there may not be a cure. The difference is the excruitating pain and fatigue we experience daily. Diabetics may not experience pain until and if, they develop neuropathy, but they do experience blood sugar drops that can lead to passing out or worse. I remind myself that while we are frustrated, we hurt, we have had our lives changed, we are capable of doing what all others who have a lifelong medical issue do; find our moments of joy. Create a new life that while limited may still be fulfilling.