| DLA |
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| 03:22am 22/07/2011 |
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mood:  calm
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This is a post to say, whatever your disability, if you live in the UK, claim it. You got nothing to lose. |
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| further to my last post |
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| 03:05am 13/01/2009 |
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I'm still itchy and covered in a rash! I've seen two doctors, and they're certain that it's not either of the severe skin reactions that carbamazepine can cause, but they're not sure what it is either. Suggestions include:
* intertrigo - a fungal infection that likes to live in moist places like in armpits and under breasts. Possible because lots of my rash is in those "skin meets skin" places.
* urticaria - allergic rash, hives. Possible because I'm allergic to all kinds of interesting things, and carbamazepine in particular is known for causing this in ~10% of people.
* ezcema - the third member of the unholy trinity along with asthma and hay fever/allergies. I have the other two, it wouldn't be surprising for me to have the third.
Thing is, if you look these rashes up in Google image search, you'll see they all look completely different. The rash under my breasts consists of large red merged patches like intertrigo, the rash on the inside of my elbow is scaly like ezcema, and the rash on my arms is spotty like urticaria. It's also possible that a lot of the rash has been caused by my scratching of delicate itchy skin and that my skin is spotty and red because I've injured it in scratching too hard. Really it's all a mystery, and I don't like being a medical mystery, thankyouverymuch.
Anyway, I had a sudden thought today. Isn't itching one of the many symptoms of hypothyroidism? What other symptoms do I have? Erm... I've been very tired all winter - unusually so for me - and excessively cold (having to wear far more layers of clothes than other people just to stay warm). My skin has been very dry for months even before the itching started, and I've noticed that my hair is falling out more than usual. I've also had concentration problems, total lack of motivation, weight gain and absolutely no sex drive - though these could be due to depression.
Interestingly, I had some blood tests in August before starting carbamazepine (full blood count, TSH, urea & electrolytes and cholesterol level), and everything was normal except for my TSH, which was 3.81 uIU/mL. The range for "normal" in the UK is 0.4 - 4.0 uIU/mL, but I know that in the US, you're regarded as hypothyroid if your TSH is over 3.0 uIU/mL. Had some more blood tests done last week, and all of my white cell counts are normal, except now my TSH is up to 5.16 uIU/mL. The doctor's computer isn't bothered because it's not very high, and it knows that carbamazepine can cause a falsely high TSH reading. It just said "Slightly elevated, retest in 6 months".
Now personally, I'm not sure I can stand another 6 months of potentially feeling like this. I certainly can't stand another 6 months of itchiness! I'm sure that I should go back to my doctor and ask for more thyroid blood tests to be done, but carbamazepine can mess up the results for all of the thyroid hormones. How do you actually confirm hypothyroidism if it can cause both falsely high TSH and falsely low T3 and T4? |
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| Carbamazepine hates me... maybe. |
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| 09:56pm 01/01/2009 |
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mood:  irritated (literally!)
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I just posted this in  chronic_health but need all the help I can get, so apologies to those of you who see it twice :/
I am on carbamazepine (Tegretol) for bipolar II. It works really well for my head. But I've been having various odd symptoms since I started taking it, which could be pure coincidence or could be medication side-effects. (Anyone who's ever looked at the documentation for carbamazepine will know that it has an absolutely epic list of those!)
I started taking 100 mg of carbamazepine on Friday 15th August and increased the dose to 200 mg on Thursday 21st August. The only serious side-effect I noted was on 26th August, that I was having trouble in blocking out unwanted noise and focusing on wanted sounds when in a noisy environment. However, I have had a snot disease since at least Saturday 6th September which has gone on all of this time.
Symptoms of snot disease: ( Cut in case you're eating while reading livejournalCollapse )
Due to the snot and because it's sensible to test during the first few months on carbamazepine, I had a blood test on Wednesday 15th October: tested for- FBC - full blood count including white blood cell count and differential - useful as carbamazepine can cause a severe shortage of white blood cells.
- ESR - technically Erythrocyte sedimentation rate, but acts as a generic test of inflammation - useful to see whether I was experiencing an allergic reaction to the med.
- Urea and Electrolytes - useful as carbamazepine can make sodium levels in the blood dangerously low.
If I recall correctly, everything else was also normal except for white blood cell count being a bit high, which was ascribed to the kidney infection* that I had at this time but didn't know about yet.
As everything was apparently normal I increased my dose of carbamazepine, but not until I had SAD so badly that I couldn't cope. I didn't write down when I increased my carbamazepine dose from 200 to 300 mg because that would have been sensible, but it seems likely to have been between Saturday 15th November and Wednesday 19th November. The snot increased again during the last week of November & first week of December. Finally went to see the doctor on Friday 5th December because I was retching so much from my Flixotide powder inhaler that I couldn't take it properly and my breathing was noticeably bad. (My peak flow had actually dropped from 430 EU metric units to 380, which doesn't sound like much except that I have weird asthma and my peak flow pretty much never decreases no matter how ill I am). Was given Flixotide as an aerosol inhaler instead and told to take 4 x 125 μg of it per day until better. I found that the retching improved a lot meaning that my breathing improved, but the snot was no better.
Now I have intense itching. I have been itchy in various places since before Christmas, and this is now affecting every "crease" in my body - everywhere that skin touches skin. Then last night I was itching absolutely all over, on my torso itself and down my arms and legs and on my head as well. There are various medical issues that could cause severe itching, and right now I'm hoping for something simple, like some sort of parasite eating me, because the other option is that it's a side-effect of the carbamazepine which might mean having to come off it.
I'm going to try to see the doctor tomorrow. With the time of year it's likely that I'll have to wait a while to see the doctor who deals with my psychiatric meds, but any old doctor should be able to look at my skin, see if they can see anything wrong, and order some blood tests. I want to ask for at least the same blood tests that I had before, and possibly some more - I really need to know whether this is a minor-but-annoying allergy to carbamazepine, or the early manifestations of a serious allergy, or "just" a side-effect that I could take Yet Another Med to deal with.
Have you had to deal with this issue? Can you think of any more tests that I should be asking for?
( FootnotesCollapse ) |
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| ... just venting... with a few tears |
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| 02:16pm 30/12/2008 |
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I'm trying to find a new Medicare medical and Rx provider before the deadline. My plan I've had these past two years doesn't seem to cover *anything* that I need... such as extensive physical therapy.
I'm now in tears because I'm so overwhelmed by the options as I compare the 51 plans in my area.
Is that REALLY the easiest option for Medicare recipients to choose? I'm out of my mind with too much information and not enough of what I need to find. Don't they know that many of us have cognitive difficulties? Or is it just the plan to screw as many recipients as possible as they give up one by one and just use a default?
FYI: Temporal Lobe Epilepsy, Endometrial Cancer, co-morbid with Fibromyalgia Syndrome (because it likes to piggyback everything!) and actively flaring.
*deep breath* okay, off to the trenches again.
x-posted to ssdi and personal journal
EDIT: It all worked out in the end. I got a live person on the phone and it was explained that I don't have to worry about the deadline and I was able to get help comparing physical therapy coverage. With that assistance, I was able to choose a new plan at the time.
Thanks all for your support and letting me vent. |
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| Learn something new everyday |
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| 05:41pm 18/09/2008 |
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I just got an online Fibromyalgia newsletter, and read this:
Xolos are a breed of dog that can provide the same warmth as a heating pad for relief of chronic pain. Due to their hairlessness, the dogs' heat is easily felt. These dogs are highly intelligent and can be trained to do just many tasks. Dogs weighing more than 12 lbs. also provide traction that can contribute to pain relief. These Mexican Hairless dogs available by purchase or grants through Xolos For Chronic Pain Relief ™ (X-CPR)™. Currently one dog is available. Those interested in obtaining a "hot dog" can visit www.pawsforcomfort.com/ for information about X-CPR's™ service dog placement program, pictures, stories, info about the breed, and the application form.
Now I have seen it all!
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Read 4 - Post |
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| Control |
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| 08:54am 15/08/2008 |
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mood:  exanimate
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I'm watching the film Control (a biopic about Ian Curtis) that I've got on loan from the library. Just saw the scene where he's having a tonic clonic seizure in the band's car coming back from London. Shit. Been there, done that (though not in a car, thankfully). 
I like the film - the black and white tones help give it that look of "realist" British films that were popular in the 1960s where it highlighted the grubbiness and mundaneness of everyday life. I keep expect a Tom Courtenay to pop round a corner. What adds to this is that the only score to the film is either what is heard at the location of a scene (e.g. radio, performer) or the band's own music. Must watch the rest of the film. |
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| Fatigued and fabulous |
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| 09:43pm 13/06/2008 |
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Oh, what a neat -- if not particularly active-looking -- community! I know lots of people here already, I'm sure. I have endometriosis and fibromyalgia, but sigh! Goth clubs have been my life. Even with other chronic illness sufferers, it's hard to explain why I would WANT to dance all night in a smoky club. Although for anyone in the DC metro area, The Dawning in Charlottesville, Virginia just switched to a non-smoking venue! A really, really tiny non-smoking venue, but a non-smoking club! Yee! I can only hope it will be a permanent switch.
A sort of amusing question for you all: Have you ever not wanted to use your cane because you're afraid of looking, well, TOO goth? One day I really needed to use mine, and I found myself really, really hesitant to use my nice black cane. I was afraid that, since I already wear gothic clothing, people would assume I was on my way to a Vampire: The Masquerade game, and "didn't really need it." I actually found a really ugly cane because it looks more authentic. ;9 |
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| crossposted to various chronic health communities |
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| 12:13am 09/04/2008 |
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I had an altercation yesterday with an old woman who wanted my seat on the bus. It wasn't that I was unwilling to give up my seat to her so much as that I couldn't understand why she was asking a person with a walking stick to move when there were healthy-looking teenagers sitting in front of me. She was arguing that she hadn't asked them because they were older than me, which I couldn't understand because they clearly weren't, and so we were going round in circles arguing instead of dealing with the problem. What I *should* have done was stand up for her, then badger the healthy-looking teenagers into moving for me. But I was tired & in pain & my brain wasn't functioning well. So she went to sit further back in the bus, where I didn't want to sit because I didn't feel capable of dealing with the steps.
I'm sure she went away thinking how utterly unreasonable "that young girl" was, and I felt guilty for the rest of the day - still do, actually. I decided that I should make some cards to hand out to people explaining that Yes, I Do Have A Disability. I thought I could make them by hand, but then I realised that probably lots of people would find them useful. It could be done with a script where you go to a website and click the buttons saying what the issues you have are, and choose the picture you want to go at the top of the card. (I want help with finding free-to-use symbols for various disabilities.) You could decide whether you wanted to declare Specific Named Disabilities, or simply explain the symptoms you have. Also you could decide if you wanted it large print so people with bad eyesight could see it, or small print so the cards don't take up much room.
So I've asked a friend who's written an online card-generating program if he'd be interested in writing a version of it for me. And when I have spoons, I'll put together some designs for the cards. I'm thinking there would only be at most 5 different card designs. The headline would say "Yes, I do need a seat on the bus" / "Please may I use your toilet?" / "I have an invisible disability" / "I have a medical condition". The IBS and ulcerative colitis charities have cards about toilet use, but they look horrible. The medical condition card would be something you could give people if you were not able to communicate, telling them what to do (e.g. if you were having an asthma attack, anxiety attack, or autism spectrum overstimulation problem). These things *do* exist but they're really nasty-looking and hard to customise.
So. Would you be interested in a card like this, and if so, what would you want it to say? |
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| SPOONS FOR ALL! |
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| 11:56am 05/12/2007 |
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Sorry I haven´t posted here for a very long time, but I haven´t been all too active on LJ recently....
So this is just a positive thinking post for wishing you all lots of spoons today. And every day! Here you go:
I am "celebrating" more than *six weeks* without a single painkiller.
Since I have had 3 corticosteroid injections at the end of October to treat early rheumatoid arthritis (not for fibro!) and been taking Cymbalta 60 mg and Dolquine (for the arthritis) every day, my fibro symptoms have been soooo minimal, as to hardly notice that I have it. I still get aches and pains and I´m certainly not cured, but I haven´t felt better in YEARS. I also have much more energy and sleep better.
Just wanting to share this quickly with you all.
And.... THINK SPOONS! :D
Xposted in fibromyalgia |
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| Am I still having seizures? |
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| 05:21pm 02/06/2007 |
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mood:  tired
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After yesterday, I'm worried that I'm still having epileptic seizures. There were two instances that seemed to match my fears on the matter. The first was at the public library just after I'd changed clothes in the disabled toilet, and the second was some very puzzling experiences during an interview presentation seminar. The night before I was up 'til 1am, and woke up at 6am in order to catch a 7:30am bus. Post Lunch I had a large Chinese lunch at a food hall, and then went to the disabled toilets next to the city library to change into some new clothes - brand new leather shoes and a shirt. It was like my concentration just seemed to dissolve. A strap on my backpack broke and I tied it off, then it was like I was moving in slow motion. During the Seminar After that I returned to the employment agency for a training session on interviews. There were three of us at the session, not including the two trainers. One had to leave and two more showed up. This was in a medium sized room with two fluoro lights. We watched a Powerpoint presentation from a small projector. Anyway, I was paying attention to this, or trying to, when I started feeling odd. I felt incredibly sleepy and started blinking my eyes at a rapid rate. I think I had a micro sleep and then woke up when one of the instructors asked me a question. It was like a corner of the room had become dimmed. The person asking the question was in that corner, and they seemed less 3D than everyone else. This weird effect continued while I was still in the room. I turned my head from side to side, and moved my eyes, but the effect stayed in that one corner of the room. After it ended, I went to the toilets to change and when I came back the effect was gone. I asked the presenters about changes in brightness, and one of them said that she thought that I'd been having a seizure because of my heavy blinking. I've never had the second happen to me before. I have been concerned of late that I am having seizures and not knowing it. Early this year I seemed to lose the power of speech for 30 minutes. A few years ago I just couldn't talk properly for about the same amount of time. Talking to my house-mate  mycosys, he seems to think that the effects are similar to being high on dope - but I don't smoke! |
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| Dance or Breathe: the dilemma |
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| 07:46pm 26/04/2007 |
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Okay, so dancing's prolly (mostly) out as I'm a wheelchair user when out and about, but what's a girl to do when she needs a club fix but can't handle swimming through the thick haze of cigarette and clovesmoke (ah, clove, how I miss thee!) and fog machine goop?
I've been developing evermore severe allergies and chemical sensitivities since developing CFS and tobacco smoke is a biggie: I've had coughing fits brought on by someone who'd been smoking sometime that *day* walk by me. :P
My solution to this for the past couple of years has been 'stay home', which has been made even easier by having a toddler. But music is food and I've been starving. Dance is a sacrament, connection, communion and was my favorite form of exercise when I was healthier ... it literally kept me going.
It's not quite the same at home alone, though. The ambient energy of a good night at a club is something I sorely miss and I'd like to get back to it ifwhen I can. (My last club visit was four years ago. I want to go dancing, dammit.)
Are there such things as smoke-free Goth and/or Industrial (and/or fill in with compatible music styles) nights? |
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| 11:57am 27/11/2006 |
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Are you tired of people thinking just because you have a disability, you can't be attractive or sexy? So are we!
Join nonuglydisabled!
Both sexes welcome! |
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| Awful |
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| 04:39pm 05/09/2006 |
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Can a bout of FM last for months at a time? I've been feeling awful for about two months. The skin all over my body feels like I have been burned. I'm sooo tired. I'm miserable. If I were told that I have a horrible blood infection, I'd believe it. My family keeps telling me to go to the doctor, but I don't want to. I've been to see a doctor over these things often enough that to know that there's nothing they can do for such vague and bizarre symptoms. They always tell me they have no idea what it is and then they send me to a rheumatologist. D: The tests they do show nothing. *sigh*
I feel scared that I'm stuck this way forever. I can't feel like this for the rest of my life. I'll go insane. There are shooting pains in my fingers, toes, wrists, neck and arms. Tylenol helps a little, but you can only take so much Tylenol before your liver fails. D:
I just felt like complaining to some people who might understand.
I feel like crying my eyes out. |
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| 09:17am 21/08/2006 |
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So today I woke up and my intestines ( Small and Large ), mainly the small feels like someone came into my room and repeatedly beat my torso with a rolling pin.
this hasn't happened in a while. I'm thinking that it's just ibs related. has anyone else had this kind of thing happen?? |
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| visual/sound |
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| 06:43pm 29/07/2006 |
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Hello everyone!
I wanted to ask a question. How do you deal with over-sensitivity to visuals and sound? Do you even have it with FMS?
Over the years it has been increasingly gone worse for me. I'm really annoyed, because whenever I do actually go out, I'm so distracted by everything, that it really drains me, and I get highly irritated. For example, if I am riding in someone's car and he/she is playing some music, I usually can't bear to listen to it, because people are already talking. After a movie outing, my concentration level is usually maxed out, and I can't even hold up conversations after 1 1/2 hours of visual/sound, and the ride back home (why do people _always_ have to keep the radio on? lol :P) is hell. The movie itself I manage fine, but then afterwords I just have to get home immediately, because my ability to concentrate is gone.
I also have trouble browsing the web.. whenever there are flashing ads, or images combined with text, I cannot concentrate or read anything. I usually don't even browse the internet much because of that. In my clan forum, the clan leader was nice enough to hard-code any forum signature images out of my account, so luckily no distraction there. :)
So.. I just wonder... how do you feel with fibromyalgia and outside stimulation?? Do any of you have similar symptoms? And how do you live with it?
I do know that heightened sensitivy to sound and visuals is listed on the many symptoms of fms, but I really have a tough time dealing with it. The daily pain is one thing, but being distracted so easily/getting stimulation & input from "outside" just throws me off so much, up to the point of feeling drowsy/nauseous/in pain. I often don't go out with friends anymore, because one evening out is too stressing for me, that I have to take time to recover the day afterwords.
I also feel very bad because I have to be so difficult (constantly asking people to turn down music, to do this, do that - or just silenly suffering), and I get really aggressive, just because I can't be "normal".
Any input would help.
Thank you
-Gabriele |
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crappy
artistic