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Posted 6/3/2018 1:26 AM (GMT 0)
Hello people. As the subject states, I'm new here and this is my first post. (I wasn't sure if there was a separate place to post first entries, but searched all over and couldn't find one, so here I am.)

I was diagnosed with fibro earlier this year and the rheumatologist quickly, through a process of elimination and by testing my tender spots (I had pain in each and every one), determined I have fibromyalgia. She said there's "no such thing" as a rheumatologist trained to treat patients with fibromyalgia and said there's nothing she can do to help me.

In addition to chronic pain, which is less widespread (other than being tender all over) and more concentrated in my back and feet, my biggest complaint is that I experience severe fatigue and either narcolepsy or frequent narcoleptic episodes. I have sleep apnea but the specialist said my CPAP machine is controlling it completely and so it is not a factor in my fatigue. I also have severe depression. I was originally diagnosed with depression when I was 12, more than 20 years ago. They later said it was bipolar disorder, but other than having too much of an SSRI in my system, I have very rarely had any manic episodes. I also have intermittent anxiety. It's always humming in the background, with relatively infrequent full on attacks, usually caused by situations (like scary weather) or people (driven by my negative, practically paranoid thoughts).

I feel like every doctor I see is just trying to push me off on someone else to avoid having to deal with me and my issues. Currently, my medications are being prescribed by my primary care physician, my pain management/spine doctor, and my psychiatrist. None of them sit there and sift through the long list to determine where changes could be made or to see if I'd benefit from a different combination. My PCP is relatively lenient and will prescribe whatever I ask within reason or send me to a specialist if he's not comfortable with it. He's prone to misdiagnose and doesn't seem to care, yet he's the best I've found in the system I'm stuck in.

I have to be very proactive about my own treatments and it's extremely exhausting. When I was a kid and diagnosed with epilepsy, my mom was my biggest advocate. She lives in a different country now and isn't here to help me. I don't know what to do or where to turn, and so, here I am.

Has anyone had a positive experience post fibro diagnosis with either a rheumatologist, psychiatrist or neurologist? (I ask of those specifically because I am probably going to be sent to a new neurologist next. The neurologist who prescribes my Lamictal is gods-awful and doesn't care at all about me. I described what I believed to be seizures upon waking to his nurse, who relayed to me his request to have my Lamictal level tested. I did. I never heard back from either of them and to this day have no idea what the result was or what I should do. It's only happened to me a handful of times, but having a history of childhood epilepsy and already being on a high dose [300mg] of an anticonvulsant, I think it's right to be concerned, especially when my doctor is so utterly unavailable and seemingly unconcerned.)

My biggest complaint right now is my "narcolepsy" (which is what I'm going to call it until someone tells me not to). I wake up, exhausted, after six or fewer hours of sleep, in immense pain, and then sit in front of my computer and fall asleep for the next six hours at least. I usually end up losing at least 8 hours a day, being either too groggy to function or literally head-desking. I'm going to ask if we can add Adderall or another stimulant to my list of meds, because short of that, I don't know what to do. My back pain is also really getting in the way these days, and I'll probably end up getting another corticosteroid injection to help with that, even though I really wanted to avoid getting one again. Another complaint is my hair loss. My dermatologist said that could be caused by low levels of protein, iron, and zinc, and I'm taking supplements now and still have rapid, widespread hair loss. I'm using castor oil hair products in addition to some other options, but nothing seems to be helping. My hair seems healthy, but I have thinly veiled bald spots now.

So, I guess that's it for now. Thank you for reading.
Posted 6/3/2018 10:59 PM (GMT 0)
Welcome, I am happy you found us!

Have you read up on narcolepsy? Generally, you're not only tired but when you wake up you can have paralysis and a dream going on. So, the dream is still doing it's thing but you're awake enough to know you're awake. The body is normally paralised during dream (REM) but most people are never aware of it. Your dreams are also at the wrong part of you sleep cycle as well which should have showed up during a normal sleep study.

If it's suspected they have you stay another through the morning. They will wake you up early and then during a time period (I can't remember how long) they will have you go back to bed. Narcolepsy people will fall right into a deep sleep. They do this throughout the morning or into the afternoon.

There are other issues though that most folks don't think about. For instance, although I don't actually have nar because my dreams come in the right places but other than that it would look just like I did. (according to Dr.) I sleep a lot in stage 1, some in 2, a bit in 3, next to nothing in 4 and quite a bit in REM.

There is also the possibility that some of your fatigue is from fibro, it is one of the main complaints from fibro peeps. Then, anxiety and depression can cause you to become incredible fatigues. As can medications. You could be low on Vit. D or the B's, magnesium or potassium. To find out you'll have to ask for the blood work to be done. Oh, and believe it or not not drinking enough water can dehydrate you and also make you fatigues/sleepy. That's something I struggle with and have had more IV's then I want to think about.

So, maybe some of these things are possible for you (among a thousand others) and you could do some reading about it. But, of course (if you can find a good one) the dr needs to help as well. I wish you much luck on finding one who understands and want to help you.
Posted 6/3/2018 11:40 PM (GMT 0)
Hi, Paingamer, and welcome! I’ve been busy all day and this is the first opportunity I’ve had to welcome you. I know nothing about narcolepsy but I do remember when I couldn’t fall asleep. You don’t seem to have this problem. I just put myself on a sleep schedule and now I fall asleep quickly and wake up at the same time without an alarm. My body is definitely on this schedule now. Getting 7-8 hours of sleep is good. You can get too much sleep and that will make you more fatigued.

You take a lot of medications! Wow! This could be why your hair is falling out. When I was on a lot of meds, that happened to me too. I would wash my hair and my hands would be covered in hair that fell out! But once I was able to get off some medications, my hair stopped falling out and I’m fine again. I see you take Metformin so I’m assuming you are diabetic. If you eat too many carbohydrates and or sugar, that will raise your blood sugar high and you will be extremely sleepy...your eyelids will be so heavy and you can’t stay awake. Read about carbohydrates and diabetes and check our diabetes forum. This perhaps could be part of your fatigue.

Please try to find a doctor who will not only listen to you but also go through your medications and eliminate as many as possible. Have you ever googled your medications and looked at side effects? You might see some of the problems you have could be caused by certain meds. For example, you take Nuvigil. It’s a stimulant and a side effect can be psychosis...which you complained about. A good doctor can help you.
Look for board certified doctors and if they are diplomates, that’s even better. I remind our members that 50% of the doctors graduated in the lower half of their class and your could be one of them.

Doctors don’t know for sure what is causing fibro but there are things that could help you. Your rheumy should know this! You are taking Cymbalta and that is one medication that some take to help with fibro. Other meds usually tried are Lyrica and Savella. Rheumatologists have helped a lot of our members. You just need to find a good one. You might see if they will run blood work to rule out ankylosing spondylitis. It’s a painful disease of the spine. I have this but was blaming my pain on fibro. I use ibuprofen with food and a muscle relaxer that has been shown to help people with AS called Robaxin. This has made a huge difference in my pain...all of my pain!

I also take vitamin D3, magnesium malate, and Tylenol as needed to help with fibro pain. I walk daily as my gentle form of exercise and I pace myself when doing things. All of this has helped me live a full and enjoyable life in spite of fibro.

I’m a positive thinker also. I think this has helped me greatly in dealing with my list of illnesses.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. There is a good link about how to maintain a positive attitude when you have chronic pain. I have read that over many times.

I’m looking forward to getting to know you better. Don’t hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 6/4/2018 11:28 AM (GMT 0)

Rockon said...
Hey there, and welcome. But I'm sorry you have been thrown into this deep, tiring, painful, and sometimes confusing pool.

I wanted to say that I do see people using aderall or similar, mostly ME/CFS patients (chronic fatigue syndrome) lately, since I have been battling the fatigue side of this with more frustration often times than the pain.

The thing about that which people may not know yet, is that CFS patients have to be very careful to avoid what is called push/crash cycles. We all try to be reasonable, and we all fail sometimes, because it's such an opposite-to-nature thing to learn to be good at. The reason for the warning is that some CFS patients have wound up housebound or bedbound by pushing themselves too much, either on their own, or at the direction of ill-informed doctors/psychiatrist. Some people find a step counter helps them to build back up from being bed bound, but remember that the brain gobbles a lot of energy, too, so pay attention when you have a medicine helping to boost the feeling of having more energy.

Neither condition has a test that we could feel reliably labels us yet. And to complicate things further, right now, which diagnosis you get may be a function of what dr you go to, and which symptom weighs more heavily for you. So just be careful not to overdo it energy-wise.

Not to be scary, that's not my intention at all, but since I haven't seen this FDA warning from April about lamictal post to the forum yet, maybe its a good opportunity to say watch out for the symptons of HLH.
/www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyalertsforHumanMedicalProducts/ucm605628.htm

And as that says, never suddenly stop the med. Talk to your doctor first.

You may also want to learn some good sleep maintenance habits. For example avoiding blue light from sunset on, so that you can produce enuf melatonin. Blue blocker glasses can be helpful. I have blackout curtains to avoid seeing the outdoor lighting in the complex. I try not to use lights. I wear a mask at times that I might need it to sleep.

I put my phone to airplane mode at night.. I am still getting exposed to it from the neighbors, the modern world. If you can, highly recommend getting some rays of the rising and setting sun. I am fairly late to do so, 8:00, 9:00 a.m., but my sleep schedule has corrected after many years upside down. (Need the Actual sunrise at the equator). These short wave red light frequencies will help your mitochondria, the energy factories of your cells.

And even so, sleep can be a mighty struggle. But maybe you can discover what it is that is tripping you up.
I hope someone else has more insight to add, and I wish you well!

(Weekends here are surprisingly quiet.)



Hey Rockon! Thanks for being the first to respond.

I don't *think* I am at risk for overdoing myself most of the time because I rarely get more than 3000 steps per day. I am very overweight and am slowly trying to introduce more low impact exercises. Usually chores make me feel like I overdid it and cause a lot of disc pain.

I clicked your link for the Lamictal and it didn't work, so I searched the site for it and found this: https://www.fda.gov/safety/medwatch/safetyinformation/safetyalertsforhumanmedicalproducts/ucm605628.htm Is that what you were referencing? I will read up on it. I'm really hoping I can find a new neurologist because my old one is awful and doesn't check up on me at all, so I don't have the opportunity to discuss alternatives. I do like that it is used for both epilepsy and bipolar disorder, so even though I can't tell if it's effective, it could be helping with both of those.

I wear special glasses that block blue light every day, so I wouldn't guess that would be it, although I do use a computer way more than most.

I will look at your post about wifi.

My single biggest problem with getting enough sleep right now is the pain. The arthritis pain in my lower back wakes me sometimes less than 3 hours into sleep. The absolute most I can get is 6 hours, but that's very rare. I've tried taking Norco before bed and it doesn't help prevent the pain, and I take Zanaflex every night before bed, which used to help with the pain and helped me relax. I fall asleep most nights within 5 minutes of putting on my CPAP mask and turning off the light. I'm going to call my spine dr today as soon as they open and begrudgingly make an appointment for another epidural. I really wanted to avoid it if possible. It's been almost six months, but I know the steroids can increase the risk for diabetes/blood sugar spikes and, while I'm not yet pre-diabetic, I'm close. I've also been told they can cause hair loss, which is one reason why my endocrinologist dismissed me after 2 appointments and as many tests. He didn't see Cushing's or an easy-to-find cause of the hair loss, so he pushed me out the door and offered me excuses.

Thanks again!

Post Edited By Moderator (Sherrine) : 6/15/2018 5:59:42 AM (GMT-6)

Posted 6/4/2018 11:39 AM (GMT 0)

Lendi said...
Welcome, I am happy you found us!

Have you read up on narcolepsy? Generally, you're not only tired but when you wake up you can have paralysis and a dream going on. So, the dream is still doing it's thing but you're awake enough to know you're awake. The body is normally paralised during dream (REM) but most people are never aware of it. Your dreams are also at the wrong part of you sleep cycle as well which should have showed up during a normal sleep study.

If it's suspected they have you stay another through the morning. They will wake you up early and then during a time period (I can't remember how long) they will have you go back to bed. Narcolepsy people will fall right into a deep sleep. They do this throughout the morning or into the afternoon.

There are other issues though that most folks don't think about. For instance, although I don't actually have nar because my dreams come in the right places but other than that it would look just like I did. (according to Dr.) I sleep a lot in stage 1, some in 2, a bit in 3, next to nothing in 4 and quite a bit in REM.

There is also the possibility that some of your fatigue is from fibro, it is one of the main complaints from fibro peeps. Then, anxiety and depression can cause you to become incredible fatigues. As can medications. You could be low on Vit. D or the B's, magnesium or potassium. To find out you'll have to ask for the blood work to be done. Oh, and believe it or not not drinking enough water can dehydrate you and also make you fatigues/sleepy. That's something I struggle with and have had more IV's then I want to think about.

So, maybe some of these things are possible for you (among a thousand others) and you could do some reading about it. But, of course (if you can find a good one) the dr needs to help as well. I wish you much luck on finding one who understands and want to help you.


Hi Lendi and thank you for your reply.

I have read up on narcolepsy. There are two different kinds, one with cataplexy, which is the paralysis you describe, and one that is much harder to diagnose that does not have that as a symptom.

Unfortunately, I am not eligible for another sleep study yet. I had my last one within 5 years. At the time, I did not have this severe amount of “narcolepsy”, just typical symptoms of sleep apnea. When I fall asleep at my desk, whether it's for minutes or hours at a time, I dream. Often they are confusing and blur the lines between reality and dream.

I take supplements for those vitamins and they test at normal levels now. I could probably drink more water. It is almost the only thing I drink all day, though. I don't think any medications are new enough to be the cause of this worsening. I do know that I'm not getting enough sleep at night, but I feel like that's only part of the problem.

I will continue to read more but haven't yet found anything that describes someone in my shoes. And of course, there's the doctor issue. ::sigh:: I usually don't even have the option of reading reviews of doctors and choosing whether or not I want to see them, I'm just stuck with what they give me.

Thanks again for your response!
Posted 6/4/2018 12:02 PM (GMT 0)

Sherrine said...
Hi, Paingamer, and welcome! I’ve been busy all day and this is the first opportunity I’ve had to welcome you. I know nothing about narcolepsy but I do remember when I couldn’t fall asleep. You don’t seem to have this problem. I just put myself on a sleep schedule and now I fall asleep quickly and wake up at the same time without an alarm. My body is definitely on this schedule now. Getting 7-8 hours of sleep is good. You can get too much sleep and that will make you more fatigued.

You take a lot of medications! Wow! This could be why your hair is falling out. When I was on a lot of meds, that happened to me too. I would wash my hair and my hands would be covered in hair that fell out! But once I was able to get off some medications, my hair stopped falling out and I’m fine again. I see you take Metformin so I’m assuming you are diabetic. If you eat too many carbohydrates and or sugar, that will raise your blood sugar high and you will be extremely sleepy...your eyelids will be so heavy and you can’t stay awake. Read about carbohydrates and diabetes and check our diabetes forum. This perhaps could be part of your fatigue.

Please try to find a doctor who will not only listen to you but also go through your medications and eliminate as many as possible. Have you ever googled your medications and looked at side effects? You might see some of the problems you have could be caused by certain meds. For example, you take Nuvigil. It’s a stimulant and a side effect can be psychosis...which you complained about. A good doctor can help you.
Look for board certified doctors and if they are diplomates, that’s even better. I remind our members that 50% of the doctors graduated in the lower half of their class and your could be one of them.

Doctors don’t know for sure what is causing fibro but there are things that could help you. Your rheumy should know this! You are taking Cymbalta and that is one medication that some take to help with fibro. Other meds usually tried are Lyrica and Savella. Rheumatologists have helped a lot of our members. You just need to find a good one. You might see if they will run blood work to rule out ankylosing spondylitis. It’s a painful disease of the spine. I have this but was blaming my pain on fibro. I use ibuprofen with food and a muscle relaxer that has been shown to help people with AS called Robaxin. This has made a huge difference in my pain...all of my pain!

I also take vitamin D3, magnesium malate, and Tylenol as needed to help with fibro pain. I walk daily as my gentle form of exercise and I pace myself when doing things. All of this has helped me live a full and enjoyable life in spite of fibro.

I’m a positive thinker also. I think this has helped me greatly in dealing with my list of illnesses.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. There is a good link about how to maintain a positive attitude when you have chronic pain. I have read that over many times.

I’m looking forward to getting to know you better. Don’t hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine


Hi Sherrine. Thanks for your reply.

I do take a lot of medications. Unfortunately, my endocrinologist decided not to pursue other options and concluded that was the cause of my hair loss. My dermatologist disagrees although she does think I should try to get off any that aren't necessary. Unfortunately, I don't know which those would be. I am on Metformin but I'm not diabetic (although I am close to being pre-diabetic). I take it for potential PCOS as well as for hidradenitis supperativa.

When the dermatologist tested me, she found that I was low on iron and zinc, as well as protein, and so told me I need to supplement those. I'm still struggling with protein as I really dislike most meat and my diet is unfortunately poor and not very varied, but I've been taking the two supplements for about a month now. I bought some protein powder for shakes but the powder tastes a bit odd and I've always been one for the super sweet, tasty stuff, so it's hard to drink for me, especially since the medication I just came off of made me constantly nauseous.

Unfortunately, as far as my PCP is concerned, I don't really have any options. I can browse the list of names available within my clinic but, unless I can find reviews on them (which I probably won't be able to), it will be a blind guess. I like my PCP, I just don't think he's equipped to deal with me. As far as specialists, I am also very limited in choices. I usually have only one choice for provider and then occasionally I will get to choose which doctor I see there. I think the endocrinologist I saw is the only one in-network for me. I will continue to browse my options, but they are few and far between. I might talk to my insurance company (a very small, company-specific one), and ask them about additional options for chronic illness management and doctors who specialize in fibro... or something; I'll have to formulate that question, first.

Did I complain about psychosis? I'm slightly paranoid but not psychotic. I've been on the Nuvigil for years and while I can no longer verify its effectiveness, I don't think it's causing any negative psychological problems. It's my psychiatrist who prescribes it.

I guess I'm going to need a new rheumatologist, based on her opinion, because she basically told me she can't (won't?) help me. I just started the Cymbalta back up, switching from a different antidepressant, and chose it again in part because it is effective for fibro. I think the other two options you listed have side effects or interactions that would have a negative effect on some of my other diagnoses. I will check with the blood work. Maybe my PCP can refer me to have that test. It's just my lower spine that hurts, although I do have problems with my posture and have had problems with my upper back/neck area related to that.

I take ibuprofen as needed, but usually only after taking a hydrocodone, which I take at least once daily. I do need to increase my physical activity. I was exercising using the program DDPY, which is sorta like yoga, only with built-in modifiers for people with disabilities. I was doing the “chair force” program and was on it for about a month when my husband stopped being able to cook dinner and we went back to unhealthy eating habits and, as a result, stopped exercising. I was surprised to find myself the one who kept asking about and encouraging exercise, but he turned me down every time. Most of the time, the exercise wasn't cardio for me, but it did help with flexibility and mobility. I'm on a beta blocker, so it's usually difficult to reach the cardio stage.

I bet positive thinking helps! I have several self-help books dedicated to trying to change into that mindset but so far have been unsuccessful. I've been locked into negative thinking for so long that at this point, I don't even know if I can change. I will continue to work on it, though.

I will double check the Fibro 101 thread. I may have missed it.

Thanks again.
Posted 6/4/2018 5:16 PM (GMT 0)
Paingamer, I’m sorry for thinking you said you were psychotic. It was late and I was tired when I wrote the post to you. Guess I’m not perfect after all! 😂

Here is a good link with foods that are high in protein. There are quite a few vegetables. Hopefully this will help get your protein levels in a good range.

/www.medicalnewstoday.com/articles/321522.php

Do count carbohydrates. I have now lost 100 pounds by counting carbs. There is a lot of info on the Internet about this. It’s a healthy way to lose weight and I have lost two pounds a week. If you lose weight quickly, it usually comes right back on. I’ve kept my weight off for around eight years now. It’s not a diet for me. Diets don’t work. Watching my carbs is a way of life. I read labels and know what I’m putting in my body. Once you lose weight, your chance of developing diabetes drops. Your lower back will feel better and you won’t be as tired. Your muscles won’t be overworked which can cause more pain. I look at me. It was like I was carrying around a 100 pound suitcase everywhere I went! Ouch! I limit myself to 100-120 carbs a day. I eat eggs for breakfast. They are high in protein an no carbs. I’ll have one slice of toast. I found an Italian bread made by Wonder that is only 13 carb per slice. I then will have three to four strawberries to round out breakfast. This lovely meal is about 25 carbs. Lunch is a salad, or fruit. Or some cheese with crackers. I will only eat a few. The crackers I like are larger than regular crackers. But one cracker is 3carbs. So I allow myself four crackers and then I break them in half. Now I have eight. I add a little hard cheese to each cracker and it’s a satisfying meal. Sometimes I have the popcorn mini-bags. They are 16 carbs for one mini-bag. Your dinner can be potatoes, two vegetables, and a salad...since you say you don’t like meat. I always have meat the size of the palm of my hand, a serving of a starch, and a vegetable or salad. I’m just giving suggestions to let you see you can have good things to eat and lose weight on top of it. I think this would help you immensely.

Your rheumatologist might have taken your other medication into account when she said she could t do anything for you. I know Lyrica can put on weight and we’ve had members get off that drug because of that. You probably shouldn’t take that because it might push you over into full blown diabetes. You don’t need another problem to deal with.

Walking is one of the best exercises for fibro. Swimming and yoga are good too. When I started walking I only could walk four houses down and had to turn back. But I didn’t quit. I went out the next day and the day after and could walk farther each new day! Now I can walk around my neighborhood, super Walmart’s, and I even walked through DisneyWorld’s Fantasy Land a few years ago! Yep, I was exhausted but I sure have bragging rights. 😁. You can buy walking-in-place videos too. Leslie Sansone has quite a few to choose from. There are other videos by other people out there too.

Make two lists...one with the negative things in your life and the other list with the positive things in your life. I bet the positive list will be far longer. Don’t forget blessings like vision. Hearing, family, a roof over your head, food on the table, clothing, etc. There are people in the world that don’t have a lot of those things. This can help remind you how blessed you really are and that lifts your thinking into the positive territory. I smile a lot too. It makes me feel better. I’m actually smiling as I’m typing this to you. I love to smile and say good morning to a grumpy looking person. Almost all will smile and say good morning back. It makes both of us feel better.

Can you do a favor for me? Please don’t use the box function to copy posts you are responding too. You only have to use the poster’s name and they will know you are referring to their post. I’m not sure why we have that function because it uses double the space and that costs the administrator more money. Thanks!

I’m going to go have a juicy nectarine for lunch because I’m having a chicken and noodle casserole for dinner! Yum! Have a good afternoon!

Sherrine
Posted 6/4/2018 6:49 PM (GMT 0)
Sherrine, thank you again and I'm sorry for the formatting - I had no idea that cost more money! I just wanted to make sure I addressed everyone individually. Well, now I know better.

That's great advice with the carbs. My husband wants to do something like that. I think for me it's a vicious cycle: I'm tired and hungry, so I make something quick and easy, which is almost guaranteed to be high in carbs, which makes me gain weight and surely adds to my fatigue. Also, thank you for the link with the protein-rich foods! I will definitely look into what I can add to my diet, things I can tweak, etc. With the carbs, did you notice having 'withdrawal' symptoms? I feel like I'm addicted to them and there are very few foods that aren't high in carbs that I find appetizing. How long did it take to change your habits, change your sense of taste, and shrink your appetite?

I will also have to look into the walking in place. With my foot pain (plantar fasciitis), it will be challenging, which is why I really like the chair force option with DDPY. I actually lost 13 pounds within a couple of weeks just from eating more conscientiously and doing around 20 minutes of chair force exercises a day. He offers gradation so you can start with chair force 1, work your way up to the top of those, and then graduate from them by starting the easy section of standing exercises.

The rheumatologist who diagnosed me said something along the lines of there is no schooling or training that covers fibro in med school and many doctors even question its existence. There was no talk of moderating medications, it was just "well, I don't know fibro and neither does anyone else". At the time, I wasn't on Cymbalta, either. She just asked me a series of questions, felt my tender points, and told me her conclusion. I won't give up, though. I'll talk to my insurance and see what options there are for me. I wish I had just one medical professional on my side.

You're right about the blessings, too. My mom bought me a book on practicing gratitude, another that I really have to utilize, and it teaches you to journal, at least once a day, about things for which you are grateful. I definitely don't count my blessings often enough. It's hard to when I feel miserable all the time, steeped in sorrow and pain, but you're absolutely right.

Thanks again.
Posted 6/4/2018 7:41 PM (GMT 0)
That rheumi gives others a bad name. No, there might not be a lot they can do but there are ways to keep you comfortabler. He should check you every so often just to keep and eye on you because who knows if/when something else might come up that would be assumed it was fibro.

Sorry, I'm not making much sense.

I do agree with checking out your meds. My Dr. layers them so if I need a med for something he'll say to take it at night or day. So, when my BP med needed changed he found one that would help me sleep as well.

And, our bodies are crazy. I take 1/2 tizanidine in the morning because a whole pill makes me way to sleepy. I take 2 of them at night as well as several other drugs that is supposed to make me sleep and stay asleep. I'm awake for hrs after I take them and wake up every few hrs. Some times I can go back to sleep sometimes not.

BTW, I took Cymbalta and it made me very sleepy and lethargic so I switched to night but still had a drug hang over the next day. But, as you know our bodies are all very unique.

I hope you can get some of it, at least, worked out. Oh, usually if there is a reason for a new sleep test the Dr. can appeal your insurance company and you can get it sooner. A lot can change in 5 years.
Posted 6/6/2018 11:20 PM (GMT 0)
I’m still wondering why you were given Metformin if you aren’t even pre-diabetic. I think you might have diabetes and the Metformin is helping to keep your blood sugar lower...especially since you say you eat a lot of carbs. I’m guessing here but I sure would ask my doctor about it. I have had full blown diabetes for 26 years and I take Metformin to help keep my numbers in a good range. Of course I watch what I eat also.

I didn’t put a time frame on myself when I started. I knew what I needed to do and did it. That’s what you need to do also. You obviously aren’t happy with how you feel. You need to make a choice. That’s what life is all about. We need to make good choices to help ourselves live better and healthier lives. If you make excuses as to why you can’t do something, your life will remain the same and possibly get worse. The choice is yours.

It truly was worth the effort. There is a lot of info on the Internet about counting carbs. You and your family will all be healthier. But do watch portion control. There are sites that let you know how much a serving of various foods is. You will be surprised.

I used to have high blood pressure. I took blood pressure medication and also a diuretic. I no longer have high blood pressure. Since losing the weight my blood pressure generally is 110/60. I also had a bad case of plantar fasciitis. I bought Birkenstock shoes and learned how to wear them. I could only wear them an hour or two per day but I continued wearing them daily and within a month I could wear them all day long. The pain got less and less and within six months I no longer had plantar fasciitis. Walking barefoot or wearing flip flops are about the worse things you can do with plantar fasciitis.

Did your rheumy or PCP do a lot of blood work to rule out other illnesses that have many of the same symptoms as fibro...things like lupus and Lyme disease? This should be done before a diagnosis of fibro is given. The tender point test is not used as much now, from what I have read, because each doctor presses the areas differently so it’s really not as accurate.

Fibromyalgia is recognized by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, and the World Health Organization...just to name a few. There should be no excuses to deny fibro’s existance But there are still some doctors out there in the Dark Ages when it comes to this illness.

I hope this information helps you and I hope to hear success stories from you soon! 👍

Sherrine
Posted 6/8/2018 10:37 AM (GMT 0)
Hey again, Sherrine. The metformin helps with hidradenitis supperativa as well as PCOS, and the last time I had my A1C level checked, I had been off metformin for at least 3 months. I was also told awhile ago that I'm displaying symptoms of insulin resistance and that metformin can help with that, as well.

I know I need to change my diet and I'm not trying to make excuses for myself, it's just really hard to change my mindset and as a result, my behavior.

I've tried Birkenstocks before. When I was skinny and relatively healthy, I liked them. Now, my feet are incredibly sensitive to texture and level of cushioning, and I also have pretty bad edema that almost always affects my ankles and frequently affects my feet, as well, and so I usually can't wear shoes that aren't highly adjustable. I'm currently wearing the Brooks Ariel 18 and they are helping a ton. I also have a pair of recovery sandals that are similar to the recommended Spenco Kholos (with orthotic-grade support), but I'm going to replace them soon with the real deal.

I know getting decent rest and sleeping every night would help me lose weight and feel better but I'm in so much pain. I need to get a new MRI of my spine before I can get another injection but I'm really hoping that will help and let me sleep.

My PCP switched me off of Bystolic and onto doxazosin because he said the beta blocker can contribute to the daytime sleepiness and symptoms of narcolepsy. I checked my BP yesterday because I wasn't feeling well and it was 110/72. I had *just* reached the point of good control with Bystolic and my BP was around 120/70 at the doctor's on Tuesday so I'm really hoping this is a good sign that the new med is more effective for me.

Sorry, I'm dozing off as I write this so I'm not sure if I addressed everything.
Thanks again.
Posted 6/8/2018 12:37 PM (GMT 0)
You know you need to do this for your health so just start right now! Take one day at a time. Log what you eat and the amount of carbs they represent. Weigh yourself daily. Keep carbs around 100-120 a day. Drink a lot of water and omit sugary beverages. Take one day at a time. Then, in a few days you will see you are starting to lose weight and that’s a huge incentive for you. Before you know it, you will be feeling better and on the path to better health.

Let us know how you are doing, okay?

Sherrine
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