My Posts on a few forums, anyone care to comment?

I feel the need to post this, I originally posted this on hypermobility.org forums.

I feel I have hypermobility syndrome… this post is sort of a rant about me not being diagnosed/a plea for help. I’m just so frustrated right now, i’ve got alot of stress to deal with sorry if this offends anyone. (let me know if i posted this in the wrong section, I’m a newbie here.)

In the summer of 2005 I went to a female Dr. in the same center as my current doctor, I explained to her I have hip and back pain.. and she said it was muscular skeletal and sent me home with flexeril, she said I should get better after taking a 30 days supply. (Hah I believed her!)

At around this time I was having horrible asthma that stayed with me after my reoccurring bronchitis (that nearly killed me in the summer of 2003. I swore it was pneumonia but I went to the doctor and she sent me away saying it was just a flu or bronchitis… I was choking and I couldn’t breathe and when I walked I felt like I was going to pass out and not be able to breathe. I really thought I was going to die. I knew I was going to die. She gave me antibiotics and an inhaler, it helped a little in clearing my lungs up.)

In October of 2005 I went to the doctor I am seeing currently for the asthma, and I told him about my asthma and we went about trying to look into that, he ordered blood tests and my CRP was high. At this time I thought I had Lupus because it felt like my body was attacking itself so I asked him, he tested for lupus which was negative. I was so sure I had Lupus because my skin is photosensitive, I had severe allergies and asthma, and my bones and joints are aching constantly. My ANA was negative, so we were confounded again. I went for asthma tests, which proved I wasn’t breathing properly but it wasn’t weak enough to be asthma. The doctor gave me Advair. What I believed was once asthma has now completely gone, I am now thinking it might be a mycoplasma infection (pneumonia) or chronic bronchitis. Imagine wheezing all the time, with constant joint pain, muscle pain, itchy skin… I really thought I had lupus.

Well the previous paragraphs were just to show you that I have a history of symptoms that relate to each other, symptoms that he could see, and he could hear me wheezing. ie : I have a medical history… I’ve had all of the blood work needed to rule out arthritis and lupus… Almost 2 years of dealing with Asthma (that eventually cleared up on its own, but I thought I was going to die many times) and now a year and a half of severe chronic pain and going to the doctor about it (I didn’t go to the doctor before because it wasn’t bad enough, I am one of those people that wait till they are in extreme pain to go to the E.R. or Dr., and I never take OTC drugs if i can help it) The doctors haven’t done anything for me. I have paid over $600 out of pocket for doctor visits and chiropractor visits, it would have been more for therapist visits, E.R. visits, and all of my blood work and CT Scans, X-rays, and MRI’s and other tests i’ve had done. It’s really hard to get me to the doctor with my pain and social anxiety. In fact I find myself able to get to a doctor about every 6 months, if you notice the pattern in my story.

I was getting fed up with my doctor so I tried a chiropractor and although he didn’t really help me long term… the visits were heavenly. I saw him June-July 2006. But I didn’t have the money for this luxury so I couldn’t continue treatment. I need a diagnosis so I can move on to getting disability and work on my health. I made the mistake of believing a chiropractor could diagnose me. He said I had subluxations in my back (I later found out that’s not uncommon to be told by a chiro) and he said my hips were uneven, and my legs were uneven. He was a bit of a letdown also because I thought he would actually pop *everything* and put everything back into place, he basicly just used a TENS machine on me (which was awesome) and banged my hip down on the adjusting table. I wanted my back to be popped darnit!(we all know how good cracking and popping those angry joints feels, almost like scratching an itch) I tried calling a local Rheumatologist but he was packed till Spring 2007 . I forewent the appointment because I knew we’d be so broke by that time. (we are.)

I went back December 2006 to my regular doctor as a last ditch effort to get diagnosed, to have him look at my case and tell me what is wrong with me. We were running out of money (we wouldn’t be okay if it wasn’t for my husbands mother.) I was armed with some new ammo… some print outs from the internet on Fibromyalgia and Hympermobility syndrome as well as a long letter explaining to him what an impact this is having on my life, and how hard it is to even get to the doctors appointment. I really thought things were changing for me. I thought I was doing the right thing… finally… focusing solely on my joint pain… doing the research for him. Handing him my diagnosis, making it easy to consider. I wasn’t pushy about it, I was just looking for some reflief from the stress of not knowing what to do. I needed for him to take me seriously, and I wanted him to listen. I said even if I am wrong about this… it’s a start to find something. In reality I am being a better doctor for myself than he is. He hasn’t done nothing but look at me funny and act like he is going to look into it. What a waste of $50. He gave me diclofenac and flexeril. Now I’m not trying to be rude, I’m just desperate… and I can’t get insurance and I’m not made of money. I am never harsh to him, or expect to much…nor am I pushy. In fact I am very quiet and polite. (I’ve been known to grumble when nobody is in the exam room though *lol*) Well he did order more blood test, which were the same ones as before. Now here is something that might shock none of you : Everything was normal. :wall: Except for my CRP which is still elevated and nobody cares about even though it means inflamation. Okay so basicly back to square one again, and I still hurt allthough I asked for Pain meds and got None. Taking my diclofenac with a grain of salt, and not taking flexeril as a pain med because I tend to doze on it (but great as a sleep aid). Basicly I got some relief at night and none during the day. I was connected to a heating pad for a week waiting for the doc to say something. (You’ve all seen my letter in the previous blogs on this site )

This is the part where my world is thrust into (more) chaos and I have to pull myself together for my mom (she has cancer)… I had to visit her every day in the hospital for over a month we all thought she was going to die. I didn’t have time for my own health concerns, I just took my Diclofenac, and Ibuprofen, and prayed i’d feel good that day so that i could make the hospital to support my mom. I was extremely bad at showing up, but considering my record of 6 months straight in the house without leaving I did superbly well at being there for her. Even thought she didn’t understand how hard it was for me. She is cozied up with my aunt now, i dont see her as much as I wish i could, but i’m sick and i need to look out for me right now. She still wont understand, but i really did myself in with all of that activity. I began forcing myself to visit the hospital on even the worst days, this sent me to the E.R. with an intense back spasm which is where I found Tramadol. Finally some relief!!! I cried when I got the prescription, and I cried taking my first pill. I was so happy. I went back to my doctor two weeks ago, explained things still were bad. I told him about tramadol and he prescribed me more. He sent me to get an MRI but I was too large for the machine (i’ve gained alot of weight since I’ve gotten worse) so then I got a cat scan instead. It just seems no matter what I do he ignores me when I talk about fibromyalgia and hypermobility. It also seems like he hasn’t bothered looking into it at all. I guess now that I’ve typed this out I can see that I haven’t persevered enough in his eyes, i might give it one more appointment if I can afford it, and really talk to him about hypermobility. I just feel that he isn’t spending enough time in the room for me to say anything to him about anything.

Can you mention more than one thing during a visit?

I also have an awful ear infection I’ve been trying to get help for… and he ignored that as well. Oh and he ordered more blood tests, for Lyme disease and my CRP which was still high. On the CT scan in two of my sensitive spots where the pain normally radiates from were two white spots inside the bone, on my L1 vertebrae and on my pelvis. I was then sent to another place for an MRI.

My doctors assistant nurse is awful. She knows I am there for back/hip pain, and she knows I am overweight. My beef with her started when she practically jogged back to the exam room, making me panic about looking stupid and made me walk faster than I probably should. I also mentioned in an earlier post about me tipping a heavy table because my back was in so much pain I just wanted to sit, so I stepped hard on it to climb up and injured myself or dislocated something. I’ve been in pain since then and can barely walk. That I let go as just a misunderstanding… or maybe just her personality to want to get things done… but she’s been so rude since then. When we called about my blood work she replies “It’s Negative” with a rude tone. She is lying the CRP is high. That’s not negative to me. And the test was specifically for C-Reactive protien. We also called about the CT scan… “It’s Negative” I can clearly see those white spots on my home pc, they gave me a cd… now how can that be negative? If she said “Negative for fractures, disc degeneration, ect” it would have been fine, but she is telling me blatant lies. We called about the MRI also, “It’s Negative”. The icing on the cake was opening the mail “Both the Lumbar & thoracic MRI were negative!” (K, Thx, Bye >.>) Don’t be so happy about it nurse smilesalot, I’m still in pain. We called back to ask if we could get a bone density scan without a Doctors appointment, and nursey said “I don’t have the time to search around to find a place, but if you find one I’ll let the doctor know” isn’t that part of her job? My husband even feels like she is jerking us around and potentially lying to us / not working with us for our benefit. This makes me not even want to go back. It seems innocent enough, but you should see the look in her eyes, and hear the tone in her voice. Also a half a year ago my hubby called the office to ask what it would take to get an hour with the doctor, and she told him to schedule a long appointment, well we called to schedule one, and nursey told him there was no such thing. I think she is sabotaging me from getting help on purpose.

So my questions… what would you do in a situation like mine? Should I go back to the doctor and press him to look into HMS? Or would you ditch him and look for someone who takes you seriously?

He wants to rule everything out, but it’s so simple to me that he could just test me using the criterea or at least offer to send me to a Rheumatologist to actually diagnose me. The last visit I got emotional and explained I can’t do anything, and I need to figure out what was wrong, and that we are running out of money, and I can’t work. I told him I need to build up a case for disability… If only I could find a doctor who would listen to me instead of walking out the door after a few minutes and then not coming back. I’m just running on my last few hopes. I know I’m the doctors worst nightmare, but i just hurt so bad… and I’m paying for help that I’m not recieving everytime i think about it I cry. I wish there was a doctor who would see me for free, because im not living im just existing. If I could feel better I would try to benifit my society somehow, i just want to stop hurting so bad. Meh, I’m crying now. There is no relief. There is nobody to help me. I feel like im on my last thread of life. Life is so unfair, I spent all of my childhood caring for my sick and abusive grandmother… and basically being a nurse to her, and now when I need help nobody cares. If anyone knows what I could do, or possibly has any advice or options for me… please, I’m desperate. If anyone in the USA knows any process to go through, or anything for emergency aid…please reply to me. We have nothing, we’re on food stamps. I can’t pay for the doctor, I hurt all the time, i cant take care of myself, and now the transmission went out in our car i’m about to give up. I’m so sorry if you think I look like im trying to feel sorry for myself or take attention away from anyone or anything, I really need help somehow. I don’t know what else to do. My husband and I are clueless now, and my family doesn’t try to help. I’ve called social workers and they say they only deal with abusive relationships… I thought they dealt with disability and life crisises. What am I doing wrong, and is there any way I can get help without any money? I’ve tried the local mental health place, my doctor, medicaid (without ssi), social workers, human resources. Nobody seems to know any way of helping with my situation except to get disability or ssi. And that is out of the question right now since my doctor wont even take the time to listen to me, not to mention we can’t drive there now.

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thank you guys so much.

Im at this point where i can barely move in the mornings, its so hard to get out of bed but the pain from laying still is worse than actually getting up lol thats why I actually am not just lying there forever. I just feel overwhelmingly like giving up, its so hard to take care of myself anymore, and im only 23. I just dont know what to do anymore, do you think a social worker could come evaluate me? I’m so stinky and just in so much pain lol. I feel so helpless and powerless to do anything. We live in the middle of nowhere so its tough.. we’re stuck without a car now too. I’ve tried calling a social worker to be told they didnt help people like me, and she didnt give any phone numbers. I just dont know what to do I feel like calling the emergency room, but i know they wont treat me and im not sure what to say or do…or who to call. Right now i cant really move because of that injury i got at the drs office, im guessing when I tipped the exam table it see-sawed back up and broke my hip or my tailbone. It feels broken.. but im embarrassed to go back to the er, I feel like a hypochondriac. I would have to get them to send an ambulance too, and that would be embarrassing. I feel like i need to get somebody to come help me, i’ve never felt so disabled. I’m not dying im just in a heck of hurt right now, the meds i have arent working either. You know that commercial “Help I’ve fallen and i can’t get up!” Thats me only im in a recliner with a laptop right now. lol. My husband is being sweet, but i dont know if he sees the big picture of whats going on with me, he thinks I’ll “pull out of it” I dont see that happening allthough it would be nice. I just keep getting worse and worse. My whole body feels infected, I have terrible acne… and i am smelling weird. I have terrible dandruff also and I’m itchy all over… My ear keeps weeping and i can barely hear out of it. Nothing i do helps…and the doctor wont spend 10 minutes with me. Ugh I’m miserable. My Uric acid is high as well as CRP, my joints and bones keep popping in and out and everywhere… everything hurts. Sorry for rambling, I’m just so overwhelmed right now, and i just feel like i need help. We’ve called everywhere and I cant get a helpful answer. I’m glad you guys are here for me <hugs> i wish my family would wake up and realize that i need help, i have nobody to drive me anywhere except my sister and we practically have to pay her with the few dollars we have left. <sigh>

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just to update you all, my sister took me to the e.r today, and I told them about my hip/tailbone/pelvis injury. They took xrays and nothing is wrong on them, no fractures. The way it hurts it feels fractured. I guess that is good. But they listed it as low back pain, it is not my back that I went in for it was my tailbone basicly. Then she asked me why I was taking tramadol, and I told her about Hypermobility syndrome, and about my chronic pain and how I think I have it but the Dr. didn’t diagnose me yet, but It still hurt so thats why I’m taking those meds… and she looked at me like “Uh huh, so you just came to me to get a narcotic eh?” She didn’t say it, but I saw the look on her face. Maybe that was a bad move on my part but what was I supposed to tell her about the pain meds I’m on? Well she didn’t give me anything or prescribe anything except a shot of some anit-inflamatory in my butt. She basicly told me to take ‘Asprin and Ibuprofen’ and to continue my current meds, and my husband said but they aren’t working for her… and then she said “Well I’m not going to presbribe a narcotic, you can bring that up with your current doctor” My heart just sank, here I am immobile from pain for 2 weeks straight and they tell me to take what I have at home. Nobody believes me, and im still hurting allthough I took more of what I have here at home and feel some relief but not much. I’m calling tomorrow to schedule an appointment with a rhuematologist… I hope he has a place for me to get in soon. I found out that I didn’t need a refferal from my dr, at least whats what the E.R. doc said. My sister is 19, and she told me she’s starting to have “Arthritis in her knee” I know that she has hypermobility syndrome too, we talked about it in the E.R. I hope it’s not as bad for her as it is for me. Well for the meantime I feel a bit more confident and hopeful, I just have to wait and see, and gather as much documentation as I can to take it to the rhuemy. Thanks to all that posted, I’m glad to have support from here… even if I do get my whiny bits in.

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This is how I’ve been feeling lately. The women at both of these forums were great, they really gave my some good advice. But well my situation is pretty overwhelming isn’t it?

But You Don’t Look Sick – Message Boards for ‘Invisible illness’

Hypermobility.org – Forums for HMS and EDS

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April 24, 2007. Doctors, Hypermobility, Medicines, Pain, Poverty. 3 comments.

My Past Medicines in review, what worked what didn’t.

I have taken Zoloft (sucks) Paxil (sucks more) Trazodone (don’t remember) Risperdal (WTF were they thinking?!? it made me hear voices) But all of these medicines were before I turned 18, the latter is my recent experiences with attempting to feel normal by using meds.

Effexor XR (75mg dosage) = Awesome for depression, seemed to relieve pain a bit, not as much as I’d like, but it’s an antidepressant. I felt it did it’s job well. But I fell into a depressed mood (over not being able to get more effexor) and had trouble taking my meds every day. I have an odd saving tendency, and i tried to take it every other day near the end of my prescription… to make it last. *slaps self in head*

Flexeril (Cyclobenzaprine) = I forget dosage, but it seemed to kinda help the pain. Definitely makes me sleep every time i take it, so I avoid it until I’m about to go to sleep for the night.

Diclofenac (75 mg dosage) = This is okay, but not great for total pain relief. This is good when I feel swollen. I don’t think the Doctor really knew what he was doing when he gave me this, it isn’t powerful enough for my pain. Causes a bad headache too.

Cymbalta = I haven’t really been on this long enough to feel it’s effects. It makes me happier, kind of a clarity happiness and not the fake ‘awesome’ effect other antidepressants seem to cause.

Ultram (Tramadol) = I first took this tonight, I have not felt normal in a long time. This completely took the pain away. I believe it’s one of the best, but perhaps not for long term use.

Demerol = Warm Mushy waves of immediate feeling good. Thats what it felt like… I got injected after an intense muscle spasm that left me in tears in the ER. Immediately took it away. Not sure about it for regular use *grins*

March 6, 2007. Depression, Doctors, Medicines, Pain. Leave a comment.