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.
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.
diagnoses: fibromyalgia; depression/anxiety/bipolar; narcolepsy/fatigue; sleep apnea; spine arthritis/central canal stenosis/herniated L5&S1; plantar fasciitis; adolescent epilepsy; GERD; hypertension; hidradenitis supperativa; hypothyroidism
rx: cymbalta, nuvigil, norco, baclofen, synthroid, nexium, valsartan, doxycycline, metformin, buspar, lamictal, abilify, zanaflex, bystolic