Am I the only one that does not have flares but daily ongoing pain?
Am I the only one that doesn't get flares but instead has daily chronic pain in my body? And daily symptoms. In about a 50-day time frame I seem to cycle through my symptoms and pain levels. That will then repeat. I will experience the same pattern of symptoms throughout that time. There will be anywhere from 2 weeks to one month of moderate daily to sometimes severe pain in the same areas, although it can be one leg one time and the other leg the next and then switch. Or be both at the same time. And then about one week or so of a more milder pain. But still there daily. Symptoms such as insomnia will always be there and some of the other Fibro symptoms are every day while some of the other stranger symptoms will cycle throughout that same time period. And it will go on and on like this, never stopping.
Now that I am older, I have other complications such as uncontrolled Diabetes 2 and Degenerative Disk Disease in my back to give two examples, but they have nothing to do with my Fibromyalgia and that can make things more confusing and harder, but I have learned to tell the difference for the most part.
I was diagnosed in 2001 when I was only 25 years old. I was diagnosed by two Fibro specialists. As well as Chronic Fatigue Syndrome. And it has always been the same for me. No flares just daily pain and symptoms with only the intensity changing. Or is that what a flare is? But I use the term cycle because that is what it does. It is predictable. Flares I thought were not. And I read or so it seemed to me that when not in a flare people with Fibro feel normal or almost normal. Every day I feel pain it is just where it is located exactly that can be a little different but not always and the coming of some symptoms while other symptoms move on just to repeat the same process and pattern and in the same time frames.
All the research I have done through the years if it is in forums with people or information read on the internet, or in books, by doctors, or things I here, flares are always being talked about. This has always made me feel uneasy about my diagnosis and has me wondering sometimes if I don't have something else. At the time of diagnosis though I was perfectly healthy otherwise. And like I said I was diagnosed by specialists. And not just any specialist but one of the leading Fibro Specialists in Los Angeles names Dr. Silverman who worked at the Mayo Hospital and clinic (still might) and has written books on the subject. As well as another Fibro Specialist and back surgeon that also has a lot of stuff written on the topic and is well known in his area. Can anyone here relate to or experience this same kind of cycling behavior? Do you also not have flares but daily everyday pain? I have been like this for 23 years.
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Part of the problem is as I age, I get a bunch of other symptoms of things. And because fibro has so many symptoms and mimics so many other conditions, I can't tell what it is sometimes or most of the time. I know I said I can now. And that is true when it comes to the things I've had for at least a couple of years. But the new stuff is confusing, and I feel like new things come all the time. I don't like going to the doctor, so I keep away. I don't care for my primary doctor, but he is the only one in my small town. And no one in the last 8 years or so has been able to give me over to a Fibro doctor. Around 8 years ago my primary thought they found me a fibro doctor who was a rheumatologist about an hour's drive from me. But when I got there, he said he doesn't treat Fibro which was a lie because he had a sign for it right there in his waiting room. During that same time, my doctor managed to find another Rheumatologist that would but when I called, they said they were not bringing in any new Fibro patients. And it went like that for two more doctors before I gave up. I am in a small town, and I would have to drive there any way at least an hour or so to get to one. I can't drive because my uncontrolled Diabetes has left me with very poor eyesight. But even so, I haven't been able to find one. It is pretty sad that even now in 2024 that is how it is.
But back to what I was saying. Too many symptoms and issues with the body has me confused and upset about whether or not something is serious enough that I should be seeing a doctor for it and get help or of it is just another "Fibro thing", or if perhaps I am experiencing something new. You would think that one person couldn't have so many things wrong with them, but I think it goes with Fibro territory. It seems that people with Fibro also have a lot of other conditions. Maybe not at first but eventually. I don't know. I could be wrong. My brother likes to basically say I am either a hypochondriac (he doesn't use that actual word) or I am exaggerating, or I am mistaken about what is happening in my own body because there are so many things wrong with me. Because he thinks since we are 100% brother and sister, he would have more things wrong with him too if it were the case. I don't doubt for a second that I have physical things going on in my body because of a hard life or that came out because of it. There is that mind-body connection after all. But I know that I am feeling what I am feeling and have years and years of paperwork backing me up. Such as MRI's and blood test-type stuff. But he and pretty much all my family, except my Mom, don't care about the facts and won't look at any of my stuff, talk to me about it, or look anything up on the web. They want to point things out though of course. Not to me but behind my back with other family members. So yeah, not very supportive. Sorry, I am confusing the subject here. I guess it has just been too long since I have talked about things.
I to have fibro, along with Rheumatoid Arthritis, IBS C, Osteoarthritis Arthritis, menopause, hyper hydronic.
I have noticed that my attacks come from repetitive motions like exercise, mopping floors, etc. They are always in areas that have been where I was badely injured in car accidents (whiplash), strained muscles or bad falls. An attack is like feeling like someone has hit me across the back with a two by four. It is accompanied by nausea and the only thing that helps me is sleep or lying on a heating pad. November is my worst month because of the acclamation to the cold weather. I tense up and Damm. I also start sweating like crazy but my temp doesn't go up, just crazy fatigue. Doc's keep telling me it's menopause, 15 years!
I don't get hot and I never believed that I was having hot flashes. You are the first person that I have heard that has the sweating ( hyper hydrosis) with is a medical condition by itself. Lately I have been using underarm deodorant on my forehead and it seems to stop the sweats.
I think it is the thyroid that regulates the bodies temperature have you had it checked out?
Thankyou for sharing your story! Through out my pain journey my sense of humour has been my best medicine!!!!!!
I did before long Covid and now it's much much worse. Wear a mask please.
Thank you for your honesty as well. It's comforting to know that you are not the only one, but I also have great compassion for you. I also have drug sensitivities so I cannot take most drugs for which I am sort of grateful because I don't like drug dependency . One drug I am taking is 100 mg doxycycline daily, it was one of the first drugs prescribed for FM when it was still called fibrositis, I have no negative reactions to that like I do to all the others.
The literature states: Doxycycline is a broad-spectrum antibiotic of the tetracycline class. Do not take iron supplements, multivitamins, calcium supplements, antacids, or laxatives within 2 hours before or after taking this medicine. Avoid exposure to sunlight or tanning beds. Doxycycline can make birth control pills less effective. Other drugs may interact with doxycycline, including prescription and over-the-counter medicines, vitamins, and herbal products. Read the literature regarding other possible side effects.
.......Also, be aware about antibiotics in general (take probiotics at specified intervals to replenish). According to one BBC article: ""The gut microbiome is a complex network of microbiotic lifeforms and all the things they need to sustain themselves in the niche of the body," says James Kinross, a consultant colorectal surgeon at Imperial College London.
The gut microbiome plays a huge role in maintaining our health, including regulating the immune system and aiding digestion. And experts argue that antibiotics are one of the biggest threats to our gut microbiomes.
Antibiotics, commonly prescribed to treat and prevent bacterial infections, are a cornerstone of modern medicine. But in the process of targeting the infection-causing bacteria in our bodies, antibiotics can also inadvertently wipe out the other bacteria in our bodies."
I reread your post this morning. And I have a question that will be for you and everyone. Something that I have often thought about and that I was just talking to my mother about the other day was how to have a positive attitude despite all the pain. How do you be happy, even joyful through any of it? Some people who are in pain or who are disabled I noticed have a cheery disposition and I think they are born with it more than anything. And then there are people like myself and my mom who cannot feel positive or feel any kind of happiness or joy at all while our bodies hurt so much. How do you get your mind to feel different from how your body feels and live it. Not just practicing self-awareness all the time. I have been trying to teach myself this. You sound like the first. I have tried and tried but I cannot get away from the depression and thinking/talking negatively almost constantly. I feel not only physically sick, but a huge amount is mental because of the injustice of it all. Not just about being sick but also things that have happened in my life. I can't help how I feel, or I would have changed because God knows I have tried. I am a Christian and I have tried even this, practicing for years what it means to be a Christian, and it hasn't helped. But even with my Christianity and what it teaches about having a positive attitude I cannot. Of course, it isn't just being sick that has done this but a lifetime of mental exhaustion and letdown as well as I have mentioned. But a lot of people have miserable lives and illness and still manage to be a happy person.
Have you always been a positive person? How do you be positive and most importantly joyful or happy while your body is at that moment aching or throbbing in pain? I ask this to everyone. How do you not get bitter over time for those of you who have not?
This was interesting to me. You said that it is an antibiotic? And like you said it can be used to treat more than an acute infection. But doesn't an antibiotic eventually stop working after a while? Or are only able to fight something for a certain amount of time? And how do you get a doctor to give you it? Because doctors do not like giving antibiotics, I know that. Also, what exactly is the doctor giving it to you for? Is there a name for what he is trying to clear up or keep bacteria down in or a function in your body? I have never heard of this before. You said that experts argue that antibiotics are one of the biggest threats to our microbiomes. But also, how important they are. I know since they haven't made up their minds it isn't a practicing thing for most. What kind of doctor do you get it from? Is it worth taking if it upsets the digestive tract so much? Oh, and then of course antibiotics wipe out good bacteria too which is a problem. I guess it would depend on the results and whether to take them and keep taking them. Have you had good results? What has it done for you? Thanks for your post.
I posted the information about what the literature states (above). I posted it because I think medical staff still way-over prescribe antibiotics. You just need to be careful and read about what they give you. Antibiotics have been a lifesaver for real infections and should be for short periods, not constant and ongoing intake. Personally, I have been treated for many, many UTIs and did not have a UTI (Urinary Tract Infection). If they do not follow protocol on clean catch urine samples, there is bacteria caught in the sample, then it shows bacteria in the result. Even when you tell them, no burning, only aching and frequency -- they still prescribe the antibiotics. Part of this is for malpractice protection. They do not look at their process which is faulty. So often, the staff are sloppy or have never been taught to offer cleaning wipes and to give instructions - prior to the part of giving a sample. Catheterization samples = always clean - no bacteria but bladder "slightly reddened". I finally caught on and have found that the aching was all part of this whole inflammatory process and Not an Infection! Overuse of the antibiotics can start a whole cascade of secondary problems. Once offered a "hat" for collection, only to find out that these were not sterilized. Again producing false results. We are in a period where physicians take very little time with the patient, get-them-in and get-them-out (make the $$). You must read up on your ailments and become knowledgeable about any meds you are taking. Often, the pharmaceuticals are produced to fix a specific targeted problem but also, can cause adverse results to other parts of the human system. It is chemistry. The medical-pharmaceutical industry is in business to make money. They are not interested in things like the herbals because you can get those cheaply. It is not to say that you should not take care in these either. Read-Read-Read up on anything you put in your mouth or on/in your body.
Thank you everyone for providing information and may peace be with you.
My parents told me I was born giggling!
My warped sense of humour has been my survival technique. It became my shield to protect me for all the teasing, abuse and bullying.
My health problems began with endometriosis in my teens. I come from a very strong heritage Scottish/Irish and being stubborn has helped me tremendously. Having a job motivated me to get up everyday and socialize but I would isolate myself on the weekends. I learned to put a smile on my face and joke around with my co-workers. I was terrified that people would find out that my Mom was mentally ill and she drilled it into my head that I was going to be like her.
I surthrived it all and a very proud of the person I am today! I have weak moments but when my thoughts grow dark I just scream STOP and change my thoughts to something funney.
I believe that my baby picture reflects the person that God wants me to be.
Keeping myself distracted helps to get me through the days.
I hope what I have shared with you has answered your question. Stay strong, keeping fighting and trust your instincts.