It’s been called disturbing.

I love freaking people out with this one!

April 24, 2007. Pain. Leave a comment.

Whee, Look I’m bendy and I fit the criteria too!



thumbtowrist

Originally uploaded by AngryApathy.

teehee, I promised you photos… this photo fits a part of the criteria for the beighton score. I can do both hand movements on both of my hands, for being 380 pounds I can also touch the tips of my fingers to the floor without bending my knees, and I can somewhat bend my elbows and my knees backwards even though it’s hard to tell with my fat, but the hands give me a score of 4 alone, and that’s all you need to be diagnosed. It’s hard to get a pic when you are doing this by yourself, I had to use the timer. Am I faking it now? 😉

Yes I’m still irate on how I was treated the past week or so by my doctors, but blogs are nice to vent in! I’ve got the posting itch since my coccyx injury was not treated by the E.R. last night. I am really angered at the state of our medical system. More pics to come soon, also my favourite hand trick!

April 24, 2007. Hypermobility. 2 comments.

More on hypochondria and fibromyalgia.

Labeling Disease: Fibromyalgia as Hypochondria

and i posted this to butyoudontlooksick.com

Hey guys, I’m really scared… How do you know if the pain you are feeling really is all in your head? I realized my doctors are running me through the process, I’ve always been as honest as I can be, but I’ve found sites on somatizing and well… How would I know if this is really happening or if this is something my brain is doing?

It’s all real to me. But now I’m crying because I feel like a complete idiot, these doctors dont think I’m being honest.. or don’t think it’s something real.

I waited 2 years to even go to a doctor once, and hubby knows it takes me ages to get to a doctor, I’d be happy to just sit in pain at home and try to deal in my own way than to be put on spotlight in an office.

I found a diagnosis I agree with in hypermobility syndrome, I wanted to inquire about that, and I’m doing it in the best way I know how…

But now I just dont know. I almost left this forum because I felt stupid. I am crazy. I don’t know what to say except I just hurt really bad physically and I have depression too, but how do you know if its real or all in your mind? I don’t know what to say. My hubby is a bit of a hypochondriac and he pushes me to the doctor alot, but he admits that he gets overly worried himself and lets his mind wonder over symptoms and diagnosis… but I don’t not till I found a name for whats going on in my body… or so I thought. But I’m in tears, because how am I ever supposed to get help? and I don’t want to waste money and go to the doctor if it is in my head… it doesnt feel like it is made up, I really hurt.

Sorry if this sounds stupid, but I’m really upset right now. My doctor has been playing me for a fool. Is there any way I can get a doctor who wont or evaluate a new doctor? I wish I could get all that money back that we spent on nothing.

I’m just angry and bummed now, and my Wutzi is trying to cheer me up. <hugs to wutzi>

… and the only reason I want a diagnosis is so I can help to manage my life better, and get disability if I am found to need it. It’s pretty hard living, and if I really was somatizing I’d be hurting everyone in my family including myself and my hubby, and it would make me feel terrible.

April 24, 2007. Hypochondria, Somatizing. Leave a comment.

Regarding Somatizing and Hypochondria

Do your doctors believe you? Or are you Somatizing or just a hypochondriac?

Somatizing Patients: Part I. Practical Diagnosis
Somatizing Patients: Part II. Practical Management
Somatization by Adriana Feder, MD

Well apparently mine think I am. I never went out of the way to go to the doctor, I was in pain for over 2 years before I decided to go. How can you get out of this matrix? [ and it is a matrix, because if you genuinely believe your condition is real, how can you tell if you are somatizing? ]

Symptoms and Syndromes Commonly Reported by Patients with Somatization

Gastrointestinal symptoms
Vomiting
Abdominal pain
Nausea
Bloating and excessive gas
Diarrhea
Food intolerances

Pain symptoms
Diffuse pain (i.e., “I hurt all over.”)
Pain in extremities
Back pain
Joint pain
Pain during urination
Headaches

Cardiopulmonary symptoms
Shortness of breath at rest
Palpitations
Chest pain
Dizziness

Pseudoneurologic symptoms
Amnesia
Difficulty swallowing
Loss of voice
Deafness
Double or blurred vision
Blindness
Fainting
Difficulty walking
Seizures (pseudoseizures)
Muscle weakness
Difficulty urinating

Reproductive organ symptoms
Burning sensations in sexual organs
Dyspareunia
Painful menstruation
Irregular menstrual cycles
Excessive menstrual bleeding
Vomiting throughout pregnancy

Syndromes
Vague “food allergies”
Atypical chest pain
Temporomandibular joint syndrome
“Hypoglycemia”
Chronic fatigue syndrome
Fibromyalgia
Vague “vitamin deficiency”
Premenstrual syndrome
Multiple chemical sensitivity

Alot of these symptoms relate to connective tissue disorders, fibromyalgia, and Immune System Disorders.

My joint pain is real and I waited for two years before I went to a doctor? So I’m trying to get a doctors attention… right. Once upon a time I went to the ER for Excessive Menstrual Bleeding and Fainting. That morning I woke up and almost blacked out, my arms felt heavy and I was on my ‘period’ I wasn’t going to mention it at all to the ER people, except I told my hubby it might be excessive as it was heavy for me at the time… I wasn’t having periods for months at a time due to my Poly Cystic Ovarian Syndrome as diagnosed my my current doctor. My husband mentioned it not me, am I Somatizing there too? I have had pleurisy that I haven’t gone to the doctor ever for and I’ve had it since I was a child, only told my mother once and never brought it up again till I met my hubby, and I suppose that isn’t real also. I suppose my hypermobile joints aren’t real either (will be posting pictures soon) Yes I’m a bit irate at the medical system of late, most doctors are lazy and are not up to speed on the illnesses that modern day life causes us… if they don’t understand it or if people complain to often about it, we are all hypochondriacs eh?

How do we get our point across if they wont listen to us in the first place? How do you eventually learn to manage your pain? This is what I’m struggling to deal with at the moment, and it is so stressful.

The whole thing is, I am giving the doctor around $60 a pop to sit there and JUDGE ME.

Whoah, I thought I was paying for him to treat me, and help me.

If you really are ill don’t give up.

My Mother who was Diagnosed with Cancer January of 2007 brought in her diagnosis on printer paper. The doctor thought she was making it up… till she made them look closer at her. The tumor was pressing on her chest (literally suffocating her), and they wanted her to do a stress test by running on a treadmill.

Honestly I don’t want to lie, I don’t want to somatize or be a hypochondriac! Does anyone have any advice? I mean… if I’m really hurting how can I tell if I am one? Now I’m really confused. Somatizing or really hurting? =( If I can convince myself to hurt this bad… I don’t know if there is hope for me anymore. Really.

April 24, 2007. Doctors, Fibromyalgia, Hypochondria, Pain, Somatizing. Leave a comment.

What are these spots on my bones?

They appear on my L1 Vertebrae as well as my hip/pelvic regions, the doctors note says they are possible ‘calcifications’ but they are at the sites that most of my pain seems to be. Nobody has pointed them out to me except in the note from the CT scan. This started making me really angry at my doctors. I mean even if it is harmless it is an Abnormality.Other than this my CT scans look ok, but I don’t know how to read them of course. I’m even more useless at looking at my MRI. So I prefer to stay out of it. However not mentioning this makes me a bit paranoid at what my doctor isn’t talking to me about.

April 24, 2007. Bones, CT Scans, Doctors. Leave a comment.

My Visit to the E.R. Yesterday.

Well I gave in and went to the ER yesterday for my coccyx pain after two weeks of barely being able to do anything for myself. It’s really hard to get up and down from any chairs I’m in, and it’s hard to get out of bed after sleeping… combined with my normal every day pain it’s a doosy.

My sister came and got me and my hubby (our car is dead.) We went to a hospital about 20 minutes away (not the usual ER we go to for an emergency, because I feel the local medical system is incompetent) Now I go to the ER normally for what I conceive is an emergency, thats why I was reluctant go go this time. My husband told me I should go, and the people on the forums said I should go… and it really hurts thats why I went. To me it was an emergency because of the pain.

I went and said I have an injured tailbone, or maybe my hip or pelvis but the whole area hurts… they xrayed it they didn’t see a fracture. I was relieved but still in agony. Well basically they didn’t do anything, and as I’ve said before about it…

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. I just have to wait and see, and gather as much documentation as I can to take it to the rhuemy.

Well apparently you DO NEED A REFERRAL FOR THE DAMNED RHEUMATOLOGIST. I am sick of being lied to. My husband called the exact rheumatologist that they told us about, he said that we need a referral. We then called the ER to ask why they lied – they said that they didn’t and that you do indeed need a referral. Thanks Alot Mayfield, Ky ER! Woot. (note Murray, Ky ER is better) So, I am still in pain and I have no clue why! But Fear not blog readers I can Diagnose Myself!!

hypermobile coccyx This picture is based on x-rays of the coccyx of someone standing (on the left) and sitting (on the right). It shows a coccyx which bends up more than normal on sitting (a hypermobile coccyx). The coccyx is the two lower segments on the picture, above them is the sacrum. The patient is facing to the left. The last segment of the coccyx bends upwards much more than it should when the person sits

Okay, Okay… this is just speculation till I can find a suitable doctor. Hopefully I can when I move. I can’t really diagnose myself even though it seems like it most of the time. Notice the part about “hypermobile coccyx” sound familiar?

And ironically I injured myself at my previous doctors appointment, you can read the blog entry :

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.

If you are uninsured you will be Punished. Severely.

April 24, 2007. Doctors, Insurance, Pain, Poverty. Leave a comment.

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

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

My Letter to my Doctor 12-21-06

Dear Doctor (the name of my dr. shall remain confidential)

I am writing this description of my symptoms because I find it easier to write them down. I have looked everywhere online for information of my symptoms, and I feel that I have Hybermobility Syndrome and Fibromyalgia. I want to get the correct diagnosis of course so I will leave that part up to you. In this letter will tell you how I feel everyday, past occurances that may be related, and finally how I feel it might all be related to fibromyalgia.

My Present Symptoms, and a synopsis of my day.

When I wake in the morning I am greeted with a feeling of my body being paralyzed with pain. I am guessing this is morning stiffness. The first thing I am aware of is my hip, a deep throbbing pain that radiates all the way down my thigh, then I realize how achy the rest of my body is. I climb out of bed, every possible back muscle hurting as much as it possibly can without being beaten physically. My hips at this point are experiencing both a radiating and sharp pain right in the joint… stabbing me hard, and sometimes knocking me breathless. I pause for a few moments normally to brace myself and think to myself “it’s going to be a long day”. But this is my every day, and it has been for years.

I’ve somewhat gotten used to it, so that I know what to expect in the mornings, it’s almost become part of my routine, although it does make me quite cranky. I have woken up this way since age 19. At first it was only my hips, the same pain as now. But then it began to encompass my whole body, back shoulders, arms, legs, but the pain has mainly stuck to my hips and back areas. I blamed this pain for the longest time on Depo Provera, a birth control shot. The first time I received a depo injection must have been December ‘01 (I was 217 pounds.) the last time I received an injection most likely was June or July ‘02 right before my father died. (dates in my head are foggy, so if I’m not accurate forgive me, I am stating it as best as I can remember. But I can probably get my medical record if this is needed later.)

My mind is so blurry, i don’t even remember exactly the year my father passed, i have to ask my mom all of the time. I can’t even remember when I was married, or any dates. And names and faces are hard to remember alot also. I have anxiety and depression. I used to feel extremely suicidal but now I want to live, that’s why I’m making an effort to get better now. I wanted to die because I felt I was being a burden, and I just don’t want to deal with physical pain anymore. On top of that I am stressed about my lack of insurance, and inability to work ( physical jobs, and I’m sure most office jobs also due to my sitting issues)

Sitting and Standing are difficult for me for long periods of time. When I am sitting sometimes my legs feel swollen and like hard plastic. Sometimes they go numb, I have no clue why. My back, shoulders, neck, and hips kill me when I am trying to do computer work, or even playing games. While sitting on a recliner or a couch I must change positions all of the time due to one hip aching too bad, this happens within about 5 minutes of sitting down. I am never unaware of my hip pain it is always there as a dull ache, I want to avoid the sharp stabbing pain… and that makes me switch positions.

Standing is something I can’t really do for over 5 minutes. I don’t leave the house anymore. Period. I currently haven’t been out shopping for over a month. If I do go out I always need a cart for support. I cannot let myself use the motorized chairs even though secretly I know I probably should. Anxiety and Back pain are the two reasons I never go out anymore. My life has become my living room. My last excursion outside was to purchase a puppy to help me with my depression symptoms. I only went along so I could pick out the one I wanted for myself and even then I was reluctant. The people were very social and had me standing for an hour, I was about to cry. The pain was so intense I started to black out, and nearly fell in their house. I do not speak up for myself very often, but I blurted out I needed to sit down because I was passing out. This is one of the events that I took as a warning call, and they agreed I should see a doctor. To describe the standing pain as best as I can I would have to say it is akin to having your back hacked to pieces over and over again with an axe. It is sharp, intense, and the worst pain I have ever dealt with in my life. It brings me to tears. I rate this pain a definite 10.

The longest thing I normally stand for is when I am preparing food (ie: a sandwich) I will lay the bread out, and by the time I get the salad dressing out there is a burning sensation. I’m guessing within seconds. I can finish making the sandwich and be ok… but it impacts me for the rest of the day… If I get to the burning point my back will not stop hurting till next morning or even later. Any strain on my muscles or joints seems to linger, this does not only occur in my back. But the back seems the worst to strain. The pain as a result of standing has been with me as far back as age 14-15. I remember working as a dishwasher for my family’s restaurant and being in tears, slow at working, and requiring help to finish the dishes. But I tried my best. But it has never been this horrible.

While writing or dealing with computers I get aches in my hands, wrists, and arms. When getting close to the blackout point while standing, my stomach feels like it’s pushing forward and I am concerned I might have a hernia. I was born with one, I’ve read it’s not uncommon for it to reoccur. I frequently get stomache pain, nausea without vomiting. I am also concerned it might be an ulcer. I frequently have what I consider to be constipation (and diarrhea when i eat certain foods) I also feel tired all of the time, and have difficulty concentrating often. I cannot complete most things required for proper self care and hygiene allthough I try my best. Getting dressed is a challenge because my arms go limp when I attempt daily tasks that require alot of their use. It takes me longer than average to put my clothes on, get a bath, and take care of myself. It exhausts me. My husband has been helping me with nearly everything except hygeine, he runs errands for me in the house, and takes care of everything that I can’t (which is everything)

Some Additional Concerns:

In the past I have passed out and blacked out on a number of occasions. The first that I can remember was in kindergarten… I was leaning forward in a chair and i blacked out and hit my head on the table, it required stitches. In 2nd or 3rd grade I was walking in from recess, I blacked out and ran into a glass wall. In charter hospital of paducah I was waiting in line to get my vital signs checked when I blacked out again… they said I ran at full speed into the front desk. I had no clue what had happened. At age 19 I was in a mall store talking to a clerk when I fell to my knees and gained conciousness just before i hit my head into the glass desk. These above events were not as a result of any pain, in fact I remember feeling perfectly fine on all of these occasions except the last one, where I had mild back pain from walking stress.

Hypermobility Syndrome & Fibromyalgia:I found HMS quite by accident online. I was searching to find out why my bones are always cracking. (most of the day my bones make cracking noises and pop with movement) I realized that I fit in with the critera of this syndrome. I can bend my thumb to my wrist, and I’m pretty sure I can do everything else except putting my hands flat on the floor, but I come close (even at my weight) This is the syndrome that eventually led me to read about Fibromyalgia. I also feel I fit alot of the fibro criterea, but I would like to leave the diagnosing part up to you. In the end I just would like to feel better and ease the pain.

March 6, 2007. Doctors, Fibromyalgia, Hypermobility, Pain, Suicide. Leave a comment.

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.

How did it come to this?

Here I am, uninsured, 400 pounds. I can barely do anything because of my chronic pain, I feel guilty as hell because I rely on my husband to help me with menial tasks. I am in a sticky situation.

It’s a vicious cycle really. Feel Immense Pain > Become depressed > Eat to Soothe Depression/Pain > Gain weight > Feel more Pain/Depression as my weight increases. > Diet to lose weight > Feel Immense Pain.

I am aware that I am not the only person in the world living this cycle. I have come to believe the pain I feel is from my Hyper mobility syndrome. Remember that kid who could bend their fingers in all the wrong ways… that girl who was extremely flexible? Yeah that’s me. But I’ve come to learn that while as a child that was fun and games it can have serious consequences as I get older. My joints are loose and by doing daily activities i constantly injure myself. I am in pain every day from the moment I wake up to the moment I sleep. This disorder is also related to fybromyalgia and chronic fatigue syndrome. This is a disabling condition, and I’m sure with my weight it can’t be good.

Now some of you may criticize me for my weight, and blame my aches and pains on weight or age… I am 23 years old, and I have been hurting like this since i was 14 and it progressively got worse. At the age of 19 I first noticed it while I was being sedentary after sleeping, my hips ached and I was sore and stiff in the morning. This was also when I weighed the least in my life in relation to my height. I weighed 200 pounds after losing 100 pounds. Before age 19 I only hurt while being active, with a stabbing sharp back pain, and of course my feet hurt. Lately my pain has been getting a lot worse, and I feel like dying to escape from the pain and the guilt that I suffer.

My depression has gotten much worse and seems to relate to the pain, the frustration I feel from not being able to work, and provide for my family makes me insane with guilt. Today as I start this blog I am on my last dollar, yes just one left. I have to ask myself how did it come to this? How did I allow my life to go so far downhill? I’m educated and smart. Why do I have to suffer pain and depression? … and why aren’t there any options for me? Why isn’t there any help for someone in a situation beyond control? Why has our government not provided me with assistance? Why wasn’t I able to get personal health insurance for any cost while I had resources?

In addition to the hell I am going through now I am also a survivor of abuse. I say that because I feel I have overcome the emotional pain of being verbally, physically, and sexually abused as a child. The depression I feel now if guilt and regret for not being a whole person, not being able to live my life. The fear of pain is overwhelming.

March 6, 2007. Depression, Fibromyalgia, Hypermobility, Insurance, Obesity, Pain, Poverty, Suicide. 1 comment.

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