Archive for the ‘doctors’ Category

Gosh its been months

January 18, 2010

I have thought about this blog a lot! I don’t have a good excuse for not writing. I still have fibro. I’m still fat. I still have a short fuse when it comes to tolerating stupid.

Anemia: I’m still anemic. When I went to the hematologist last, the idea was that after 6 iron treatments, I’d give my veins a rest for a month (still have phlebitis in my left hand, it’s still periodically very painful), come back for a retest, and resume treatments. However, my hematologist could not find my chart, and my instant CBC results were normal (the info that takes 24 hrs to generate is more useful in my case though), so she said I was fine and she didn’t need to see me any more. She clearly dismissed everything I’d been through, and didn’t remember anything about me (understandable without my chart), and made up numerical data regarding my previous visits. What a waste of a copayment.

I’m secretly glad not to be getting weekly iv’s however. I’ll ask my gp to run the numbers again at some point. I can’t imagine I won’t need more iron in the future.

I saw an endocrinologist about possible PCOS, and the bloodwork was negative twice, so my periods are irregular for no good (and no measurable) reason. Another wasted copayment. I’ll just hope I see menopause soon :)

I’ve had some new pains that seem more like fibro tender points and I’m betting that’s exactly what they are. Just above the outside of the ankle. The middle of the outside of the lower leg. Outside of the thighs. Forearms, biceps, fingers and hands.

I went to the doctor about my hand pain, just to document it, and when I told her this reasoning, she stopped and said many of her patients say this and she thinks it’s because they haven’t been believed in the past, and were not treated properly to boot. I almost burst into tears right then and there. It’s true: when I have to tell a doctor to write something down, it’s clearly because I’m not respected as a person. We decided my hands weren’t arthritic (no more than usual for having a few broken fingers growing up), but it was likely a new tender point (fibro friends note: this is unusual, in the hands, but not uncommon! Speak up to your docs if you notice this), and we’d image it if it changed or worsened.

My husband got me an electric throw blanket, and it might be the greatest invention ever. I highly recommend it if you have temperature regulation problems! The throws are cheaper than full sized blankets and run about $40 or so.


Still Anemic

October 27, 2009

Venofer, intravenous iron.

I had my sixth iron infusion yesterday. That brings the total of intravenous iron up to 1100 mg, in the form of iron sucrose. I’ve been eating lots of leafy greens, black beans, and walnuts (along with anything else that boasts a high iron content, like molasses). And my iron levels still haven’t come up. Well, to be fair, they’ve increased a bit, but not enough to excuse me from future iron infusions. My hematologist would like me to try four more treatments, but because my veins are shot to hell right now, we’re going to take a month off. I’ll go back on December 7 for an iron re-check and a visit with the doctor, and then we’ll come up with the next phase of the plan.

In the meantime, I have a new supplement to try (Salus Floravit) that’s vegan and packed full of iron, and hopefully won’t bother my stomach, either.

On Sunday, my brothers-in-law invited my husband and me sailing. I’d never been sailing before, so this was a real treat. We went out into San Francisco bay, under the Golden Gate Bridge, and into the ocean. It was wonderful. Perfect weather, great company, and I LOVE the ocean. I can’t get over how amazing it was. I have some great pictures and great memories!

View of the Golden Gate Bridge from below in a sailboat.

Of course, no good day goes unpunished, and I spent yesterday and today recovering. Yesterday was particularly painful and exhausting, and while today has improved, I’m still not up to speed, and my stomach (fibro-related IBS) is very unhappy. But I have amazing memories so it was well worth it!

Speaking of stomachs, I also saw my general doctor recently because I’ve been having new and different back pain, and lots of nausea and stomach pain. My back was xrayed (mild scoliosis and disc narrowing, so not a real explanation for my pain), and I had a Celiac test done (no results yet). She also suggested taking Prilosec OTC for 2 weeks straight (I’d only been taking it when my GERD was flaring), probiotics, and small frequent meals. The probiotics seem to be helping a bit, although I still get nauseous every time I eat. I so rarely throw up that I can ignore the nausea. It’s probably just fibro and motility problems. (That’s my guess. My doctor is great and is smart about not dismissing everything as fibro until other explanations are ruled out.)

So it’s a low-key week for me. I certainly miss the days of being Super Productive Girl, but on the other hand, a nap on the couch sure does sound like it could cure the world’s ills….

still truckin’

October 2, 2009

I was going to post a general update, but before I get to that, I just wanted to give a little shout out to the only comment about this site via stumbleupon.

from: Plank2x4 reviewed 7 months ago
Give it time, Vicodin is still a narcotic, and now she is taking it on a regular basis… Watch the show House… she will be like him in two months! Great story! (source)

Up until about 97 seconds ago, I thought that it was good that “House” educated people about unusual medical issues. “House” has even been known to mention fibromyalgia as a legitimate disorder (even if it’s always ruled out, since fibromyalgia is pretty anti-climactic in show biz), which I appreciate, along with other little understood autoimmune disorders. However, this guy, a complete stranger, just accused me of being a junkie because of a character on a television show.

And here I am, discovering this 7-month-old comment, and I’m NOT A FUCKING JUNKIE. Unfortunately, I’m *also* not a brilliant doctor with impeccable analytical and reasoning skills, but I guess I shouldn’t be surprised. Because it’s fucking television.

So, in case you’re wondering, plank2x4 (although I doubt you are), I’m still taking Vicodin, and I’m still not addicted. I do take it daily in the morning, when my back pain is the worst, and on rare occasions (about once a week) I’ll take a second or third dose that day. One pill (that’s a dose of 5mg hydrocodone) once a day hardly makes one a junkie. This has been my routine since I started taking the Vicodin, and I can count the number of back pain flareups requiring a second day of extra dosing on one hand. (Once was the weekend we walked all over Chicago. Then when we walked all over San Francisco the week we came out to find a place to live. And then the week of my bone marrow biopsy, which kept me in bed for a good week or more.)

It’s people like plank2x4 the government is addressing when they use fearmongering to scare the pants off citizens about things like over the counter pseudoephedrine, even when you have terrible allergies, and prescription opiates, even when your pain is so severe you can’t pull your pants down to go to the bathroom, carry a bottle of laundry detergent, or bend over to empty the dishwasher. (That’s me, by the way, without my morning Vicodin dose, in case you didn’t figure it out.)

So, now that my feathers are all ruffled, and you know I’m not a junkie, I’ll tell you how the bone marrow biopsy turned out.

My iron stores are low. That’s the iron that’s supposed to be in my bone marrow, but isn’t. Apparently, my serum iron levels are borderline normal, but it’s still possible to have nearly nonexistent iron in the marrow, and when that happens, things start working overtime, and the bone marrow starts pumping out whatever it can think of to take the place of the missing iron, and that resulted in too many white blood cells and platelets. The treatment is effective and relatively simple: I need to get 6 weekly infusions (by IV) of ferrous gluconate (iron). The hematologist will recheck my blood during the course of this and at the end, and then decide if anything else needs to be done, besides eating iron-rich food and taking some iron supplements (while I am vegan, and this is actually not difficult to do in a vegan way). Hopefully she didn’t mean “recheck” with a second bone marrow biopsy, because there’s a high probability that I would flat out refuse another biopsy, especially without sedation.

I had my second infusion this week, and it’s going fairly well. After the first one, the very next day I went grocery shopping for the first time by myself in over a year. This is unheard of! I had mental clarity, and a little energy. By the end of the week, I was pretty tired, but that was the fibro talking from doing more than I was used to all week. I was still mentally alert! I still am now, actually. After the second infusion, I didn’t get much more energy, and I developed phlebitis at the IV site. They used the same site for both infusions, but this week the nurse used too large of a needle (they usually need to use the smallest), and banged me up pretty good (hurt like hell going in). It was rough. I had to go back to the treatment center just so they could check on it, and they said it should improve, but no more using that site for awhile. Since I don’t have any other less difficult spots, I’m kind of dreading my infusion on Monday. I’m not sure where they’ll stick me. :(

It’s pretty nice to have some of my brain back, though. I was really feeling… dumber. I still do stupid stuff (like forget to turn on the oven when cooking, or the coffee pot when making my husband coffee in the morning), but that’s more like “fibro fog” and less like my brain cells are wasting away, which I was starting to worry about. But apparently it was low-iron-fog instead. ;)

Anyhow, so currently my only (new) complaints are a near-constant stomach ache, probably from the massive doses of iron, and the phlebitis in my left hand. My hand is improving, and hopefully my stomach will either adjust, or return to normal when all these infusions are done.

I know a lot of “fibro bloggers” give lots of advice, but for now I’m just documenting this whole process, and my new found adequate healthcare. Honestly, what works for me might not work for you, and vice versa. Next time, I’ll talk about what’s working for me and my fibromyalgia.

I’m creeping a little too close to the 1000 word mark, so I think it’s time to wrap this up. Thank you for reading about one fat girl’s fibro journey. :)


September 8, 2009

I was going to start chronologically when it came to updates but I think I’m going to start with the most recent and then work back logically from there. I’m starting with the most recent because it’s the most painful and biggest obstacle right now.

For several years, I have had a high white blood cell count and a high platelet count. Every doctor has dismissed it as not relevant or useful or meaningful. My current GP sees it for what it is, a symptom of something, and sent me off to a hematologist. My great GP reminded me that she did not think I had anything serious or life threatening but did give me a heads up that she was sending me to a cancer center. I appreciated the warning although I admit my blood pressure was STILL through the roof when I got there.

So I was tested for various autoimmune diseases and simple anemia, as well as leukemia. Eveything was negative. I was tested for a proliferation disorder (where bone marrow just makes too many of certain cells), also negative. So the next test needed was a bone marrow biopsy.

This is sound logic and I appreciate that simpler blood tests were run first. However, I have a disease that makes me hypersensitive to pain and prevents me from recovering from trauma and stress in a timely manner. I expressed my concerns and, to be honest, I don’t think these people have ever worked with a fibro or cfs patient before. The assured me that lidocaine would be sufficient and absolutely would not sedate me, despite having read that sedation is not uncommon these days. The nurse practicioner was understanding and offered me morphine by mouth beforehand, because that was the best she could do.

So I went in for this procedure on September 3. I will spare you the details because they are upsetting but the gist of it is this: the pain was as close to unbearable as I ever want to get. I felt everything they did. I was in tears and I suspect I screamed. And on top of it sycking in general, it took 3 tries to get the bone sample out of my pelvis.

In hindsight, there wasn’t a lot of sympathic gestures. There wasn’t even a wheelchair offered to get us to the valet parking (walking was so very painful, and still is). They did not know I was allergic to latex until I got my husband to ask about the bandage they were putting on after. They were quick to offer benadryl. Pls dont sue us. They did bring orange juice when they found out I hadn’t yet eaten and the pain was making me sick to my stomach.

I think they were surprised at how I responded. I know I was. You know how you get all stressed about certain things and they turn out fine? Yeah… This was the worst experience i’ve ever had. And I didn’t think it’d be all that bad and believed most of my stress was fear of the unknown.

Since that day, I’ve been mostly in bed. I’ve taken a lot of naps and sat on the (uncomfortable and temporary) couch a little. I’ve been regularly taking vicodin that I use for my back. And that barely touches the pain.

Today is the first day I feel I can say “the pain has decreased,” but that puts it at an 8 out of 10 when it was 10 (or 100, it doesn’t matter) before. However, I’m still so tired. Like coping with pain is exhausting. And if only I could sleep enough, maybe it will stop hurting.

I’ve been useless at home, which is guilt-inducing. I also keep having hospital flashbacks (which are not uncommon for me but it’s never this severe). I jolt physically and remember the pain no matter what I’m doing when the memory is triggered (it’s often just feeling the current pain that makes me relive the experience). They give me nightmares. I hear people often saying that we forget pain. But I never do. I still remember how I felt when I broke my leg when I was 7. And how it felt to walk through 3 airports, return a rental car, and drive myself to a clinic with a broken foot. I remember this pain in my pelvis like it just happened.

I guess technically it did just happen.

I have a follow up appointment to go over the biopsy results on the 16th. I’ll let you know what happens.

wow, a happy post!

March 1, 2009

I finally went to my GP three days ago to touch base with him. He made a note at my request that I had to leave my part-time job. We talked briefly about my frustration that I’m always in pain and always tired and I felt useless. He told my husband to “kick her butt” and then said “but don’t hit the tender points.” Har har.

He agreed with me that Cymbalta and Lyrica weren’t the best fit for me, since I was concerned about negative effects of a psychotropic drug, as well as taking a medication that is likely to cause weight (Lyrica). The doctor agreed with me and said that both drugs are likely to cause weight gain, and agreed with what I said about taking an anti-depressant. We talked about how tramadol does well for my fibro pain, but doesn’t touch my back pain.

My GP was hesitant about going down the “slippery slope” of narcotic use, and I agreed with him but asked if we could try it. I was hopeful if my back (and hips and legs) would stop hurting, that I could maybe deal with the fibro pain better. He offered me Vicodin (hydrocodone + tylenol) for a month to try. He urged me to only take as much as I needed, and to avoid taking it if possible. I don’t want to get addicted to anything or build up a tolerance to anything either, but if it worked?

Boy, did it work! I took a pill that night and my back improved tremendously. I’ve always had a problem with the “Pain Scale” (link shows 1-5, though my doctors operate on 1-10) because my pain was always so mixed and complicated, and all over. I used to say I was always at an 6 to an 8, depending on the day. But once I experienced a moment with NO pain? Holy cow, I realised I’ve been living at a 9/10 or 10/10 for the last couple years. It’s been so awful that now that it’s gone, I realise exactly how bad it was. Now I’d say I’m at a 2/10, where it hurts just a little, but it’s SO much more bearable, that it’s fine.

You’d think because I was taking narcotics, I’d be sleeping all the time, and I’m really not. I admit I feel fatigued (which is different from tired), and that makes it hard to just jump back into things, but I’m in LESS PAIN. Being in less pain gives me energy! I can walk around a store with my husband! I’ve even gotten back into the kitchen to cook, which is something I haven’t done in a few months.

Also, I asked about a muscle relaxer for the fibro, and my GP offered Flexeril. I take it at night, instead of a Vicodin, and it relaxes my knotted shoulder muscles enough to make it easier to sleep. Sometimes I put the heating pad on my shoulders, too. The last 3 nights, I’ve slept through the night (except to get up to pee once), and woken up feeling better and in less pain than usual.

Who knew this was even POSSIBLE? I can’t help but wonder if this is only a very temporary effect, but even if it is, I want to remember what it was like to have a little bit of my old body back. And I want to document it!

I haven’t found a cure, but I may have found a way to manage my pain.

The first diagnosis

February 6, 2009

I thought it might be helpful to talk about how I came about being diagnosed in a half-assed manner by my GP. I’d actually mentioned a year and a half ago that I was concerned about my achey, sore, weak wrists and knuckles, but he shrugged it off, I lost my insurance, and it went undiscussed for a year. A few months ago, I walked into his office again and said there’s something wrong. I’m exhausted, I’m achey, I’m different than I used to be. He ran a CBC (complete blood count) and told me to take ibuprofen.

I can’t take NSAIDs because of my GERD. It’s exceptionally painful and causes severe reflux. Not to mention these drugs don’t even touch my aches and pains. (I’ve tried. It’s useless.) The doctor said to take them anyway.

My CBC was normal. He ran several of them over a few months, everytime I went in there and asked for a rheumatologist, and even once ran a rheumatoid factor (normal, no rheumatoid arthritis). My SED rates were always sky high, but he never ran ANA. Everything else was mostly normal, although I have high platelets.

I told my doctor during one visit that I needed this documented because I didn’t want to discover it was “all in my head” as some professionals believe fibromyalgia is a psychiatric disorder. He told me “it’s not all in your head, but there’s nothing I can do for you.” I told him I wanted a diagnosis. If I have fibromyalgia, I want to have a name for what’s changing my life.” He told me, “Fine. You have fibromyalgia.”

Well that was anticlimactic.

So he prescribed tramadol for the pain, and amitriptyline to help me sleep better and hopefully give me more energy during the day. The amitriptyline made me a daytime zombie and robbed me of what little energy and productivity I had, so I stopped it after 2 weeks. I was on a low dose, and couldn’t go any lower. The tramadol helps take the edge off, but it’s far from perfect.

Of course, it should be noted that during all of this, he was always telling me that if I lost weight, that my symptoms would diminish.

The final request for a referral was my third formal “please give me a rheumatology referral” request and I brought my husband in for backup. My husband noticed that, when I was asked why I felt I needed one, the doctor looked visibly insulted when I said, “I’ve tried your way, and I still feel badly. I think it’s time we escalate this to someone with a little more experience in dealing with these disorders.” Visibly insulted! Nothing like a doctor taking his work personally. But I got my referral.

I guess the lesson is that persistence pays off. And insults doctors.

the rheumatology appointment

February 6, 2009

I’m going to work a little backwards, since I’ve been fighting with my GP for awhile before I finally got the rheumatologist referral (I had to ask four times). But since I didn’t really know what to expect, I thought others might be interested in knowing what the appointment entailed. Of course, your mileage may vary.

The nurse was kind enough to explain the whole process to me before getting thrown into it. She gave me a hospital gown and cheap paper sheet and said I’d go talk to the rheumatologist first, and then come back to the room where I’d take everything off except for bra and panties and put on the gown, and then he’d come in and check me out. Then I’d get dressed and go back in to talk to him.

The rheumatologist asked me a really detailed history, ranging from how dry my eyes were to any appetite or weight changes. It would have been helpful (in hindsight) if I’d brought my own complete medical history so I could reference it. I completely forgot to tell him that I had mono! Luckily my husband was there to remind me.

Since the exam room was freezing and cold makes me hurt, I put my hoodie on over the gown and left my socks on. It seemed to bother the doctor a bit, but my comfort is more important than his. I had to take off my hoodie (and then he later took off my socks when he got to that point) and he gently squeezed my wrists, knuckles, fingers, bent my elbows, rotated my shoulders, and then hit some of the well-known fibro tender points in my shoulders and neck. Those made me pretty vocal and caught me off guard. Honestly, it made the rest of the exam pretty miserable. He had me lay down and he felt my abdomen, my knees, ankles, and feet. He had me stand up and bend over, then walk on my toes and walk on my heels a very short distance. then he pushed on my spine, which hurt like hell (because of the arthritis).

Then he left and I got dressed. In his office, he realised he forgot a couple points, so he poked at my hips and the fibro spots below my hip joint, which made me yelp. I had heard him dictating notes into a recorder when we walked in, and he said “fibromyalgia,” which he confirmed when we sat down. “You have a condition known as fibromyalgia.”

We talked briefly about what that meant, since I was well read on the subject. He recommended a book about fibro. He told me that losing weight and exercise would improve my symptoms. I told him that this would not happen overnight, so what else can we do? He decided to pass the medication game off on my GP, who has been less than useful in that department. I’ll talk about that in another post. The rheumatologist said he would recommend Lyrica and Cymbalta to my GP.

My husband thought to ask the doctor of my bout of mono would have caused all this, and the doctor said “maybe.” Because no one really knows what causes fibro.

I think we left with more questions than answers, to be honest. But! At least I finally had a confirmation of my diagnosis. That counted for a lot.

Be prepared: The tender point test made me hurt for the rest of the day, and made getting to sleep that night really difficult. I would recommend a late appointment so you can maximize your day, and take something to sleep if you don’t normally. I wish I had.