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Your story & diagnosis?
46 replies to this topic
Posted 15 June 2006 - 06:02 PM
As some of you may know I have recently been diagnosed with a connective tissue disease, today I seem to be struggling with the emotional side of things, so I am interested to hear your story, when you were diagnosed, how you have come to accept or deny your illness & the effects it has on your life, changes you have had to make or are yet to make, the differences in the relationships of those ariund you etc etc..
I am at the end of my two week grace period, in that I have to wean from the steriods I am on & TBH the thought scares the life out of me I have still had pain especially the past few days & the thought of dropping the meds, ugh! I just don't want to think about it..
Anyway, enough ramble from me..
Lushy, struggling today, but still swimming...
Posted 15 June 2006 - 10:12 PM
Sorry to hear your news, sorry don't know which connective condition you have been diagnosed with.
Myself and my dd both have Sticklers Sydrome which is a progressive genetic connective tissue disorder.
I am lucky in that I was diagnosed when I was still a child. Growing up, it caused problems, but I was in denial as to what it really meant to my future.
When my dd was born three years ago, I quickly faced the reality of the condition when she was diagnosed. Since then, I have had good days and bad days relating to her diagnosis.
Most people have never heard of Sticklers and to make matters worse, you can't look at us and see a problem. The only real outward sign is that we wear glasses.
I think any diagnosis that changes our lives, we emotional deal with that every day of our lives. I look at my life now and know that things could be different. I grieve everytime I see a mum or dad running in a playground with their child. I grieve everytime I hear my precious little girl say "that will hurt my legs".
I enjoy my good days so much especially if I am having a bad one. At the moment, I really need to lose some weight to ease the pain and discomfort in my hips.
I hope your better days come soon. Vent, cry and scream on your bad days to relieve the stress of it all. Good luck with losing your medications. I still miss Vioxx, worked really well for me.
Big hugs to you
Posted 15 June 2006 - 10:46 PM
sorry to hear about your conditions.
I have goldman favre syndrome which is a genetic eye disease. In a way I guess I am lucky cause I don't have any pain at all, the only problem is my peripheral vision is getting smaller and smaller and it could lead to blindness. I have to be carefull when I walk so I don't keep knocking things over, especially my 1 yo DD who now starting to walk (I knock her over a couple times )
When I think of what will happen to me, I just feel so scare of not being able to see her face and not able to take care of her and I just cry. But there is nothing I can do cause there is no cure for this disease so I just try to forget about it and be positive every day.
Best of luck.
Edited by agnes, 20 June 2006 - 01:19 AM.
Posted 17 June 2006 - 06:47 PM
hi Lush and others,
Going to be a quick-ish reply as my arm is being a right pain and got to go heat up dinner.
I have relapsing remitting Multiple sclerios. I was clinically diagnosed with it 1st June last year, but we knew it was a possibility after my first episode that January, and putting myself into hospital after getting to the point of being numb from the neck down and not being able to walk properly or carry DD.
Due to my eye condition - intermediate uveitis (or par planitis ) - I knew it was really just a matter of time for the clinical diagnosis.
It was a bit of a shock at first, as its not something anyone really wants to have. But I did as much research into things as I could, and have support from my family and work collegues.
I try not to think of the future too much in aspects of things getting worse, as that only leads to worry and might never happen. So try to be optimistic as much as possible, and usually forget on a daily basis that I have MS, unless symptoms are bad or someone asks how I'm going with it. To me its just another facet of my life now.
Changes I've had to make:
well I take Rebif injections 3 nights a week, which are just another annoying part of life now.
I've found I can't do much in the hot weather, so have to plan carefully around that. And I'm more careful going up and down steps, especially when I have numb legs.
Differences in relationships:
Bit hard to say as DH and I had just reconciled after 9 months separation when I had the first episode....so I guess it was a good sign that he stuck around after finding about the MS possibility. He doesn't talk a lot about my condition, but he is good in reminding me about my needles and letting me rest when fatigued.
With my friends, its just life as usual. My bestfriend knows the most info, but isn't too pressuring in being too concerned (like some people at work get at times).
My parents are quite good and have become avid supporters of the MS Society. They do what they can to help, but in discrete ways (having DD over for sleepovers, paying for some health supplements, driving me to eye specialist appointments).
Ummm...will have to leave it at that. Might pop back later and see who else has posted.
Posted 18 June 2006 - 09:50 AM
I'm sorry to hear that you've just been diagnosed with a chronic condition. It's very hard to face the thought that you have to live with this for the rest of your life.
I, like Savanna, have relapsing remitting multiple sclerosis, diagnosed in Feb 2004. I had my first episode when my DS was 5 months old, although at the time it was written off as something else. Then I had a bad episode, starting with dizziness and vertigo, and progressing on to altered sensation from my toes to my ribs. It was very scary. My son was 18 months old, and I was admitted to hospital for MRI and diagnosis. The first time I saw my neurologist he gave me the 'MS is not a death sentence' talk, withou actually telling me it was MS. I had to wait another 5 days for MRIs to be done and reports given before they could give me the official MS diagnosis.
Being a nurse, I had very mixed emotions when the time came. I KNEW there was worse things to be diagnosed with, and so was relieved in a way that it was MS, and not one of the ones that would kill me. Still, MS is a pretty scary illness to have. You literally don't know how you will wake up tomorrow, and that fear is a very, very hard thing to come to terms with.
I guess I mostly have come to terms with it now. For a while I had to stop taking phone calls, because I couldn't stand having the 'I'm so sorry to hear the news' phone conversations with people, and yet it was so great to know how many people cared. I was quite physically disabled for a number of months, and unable to care for my DS completely, meaning that when DH was away for the day someone would have to come and sit with me to help me look after DS. My speech was effected and so my ability to communicate with my family and friends was effected. This was particularly hard as my family are interstate and so I mainly keep in touch via phone.
I have now mostly come to accept the MS. I know that there are certain things I have to do, as the MS-related fatigue is a very large part of my life now. Like Savanna, I can't do much in the very hot weather (living in Sydney is a curse sometimes) and I need at least one total rest day a week. I know that fatigue and stress make me have episodes, so I try very hard to avoid those things in my life. I only work 2 days a week, when I would like to work 3 or 4. And I mostly have reasonably early nights (9.30).
As for relationships: my DH is absolutely fantastic. He has been my rock through all of this. He is always there for me, and totally understands when I need to just sit down, or have a sleep. He has never wavered in his commitment to me, and our marriage, even when times have been very tough. Most of my friends have been likewise fantastic, my bestie particularly. A few people never even took the time to ring me and talk to me about it, or made very hurtful comments. Those people are no longer in my life. I figure with an illness like MS you need people around you who are prepared to be with you in both the bad times and good, knowing that the bad times will be much more frequent for you than for a 'normal' person. My family have been likewise fantastic. My Dad is very unto researching MS, and often send me articles that he finds in New Scientist magazines and the like. They help me with paying for specialist appointments and the like.
I guess I am also in denial, as I know that I could wake up tomorrow and not be able to walk or talk, and that scares the (rude word) out of me! So, I deal with it by living each day as it comes, and assuming that tomorrow will be the same as today, until proven otherwise.
I hope my ramblings have helped in some way. It's always nice to know that there are other people out there who are living with chronic conditions, and can understand the reality of it, even if they don't have your actual disease.
Thinking of you,
Posted 19 June 2006 - 05:11 PM
You're definitely in the right place here. All of the women here have given me so much hope and strength. It took me a couple of years to really start to deal with my condition (I have rheumatoid arthritis, and now Lupus as well it seems!). I kinda just fell in a heap and was teary all of the time. I was making my husband feel miserable because he couldn't help me, and neither could my family. It's true that no-one understands what it's like unless they're going through the same thing.
Anyway, I decided to get some help and see a councellor. She was fantastic. I only needed to see her once. I think that the fact that I had someone to really pour it all out to and have a damn good cry with (and who didn't judge me) helped enormously. I needed to grieve for what I had lost. Not long after that I found the wonderful women here. I was overjoyed to find a whole group of women who knew what it's like to have a crappy day and no-one to blow off steam about it to.
It's also very humbling for me to see how courageous and strong these women have had to be and they've suffered far worse than I. It's helped me put some perspective on things I guess.
Lush, I hope you find the outlet you need. It's often different for everyone.
Thinking of ya babe.
Posted 19 June 2006 - 11:00 PM
Thankyou all so much for taking the time to reply, I do appreciate it
I have started to wean from the pred I have been on, TBH it was starting to make me ill anyway, got to love that the meds we take to get us *better* end up making us feel crappy anyway
I really need to get to bed, so won't do a big post now, but the older two are at DC tomorrow, so I will have time to sit & reply then..
Thankyou all again, this past week has been a very difficult one for me, emotionally as well as physically, sometimes I wish I could just fast forward to 12mths from now, so I could be *comfortable* with all of this & not be so new, and therefore, anxious, confused & emotional with my life as it now is....
Posted 20 June 2006 - 03:31 PM
Oh yes, its such a pain in the butt when the meds you take only give you more symptoms of a different sort. Although when you have been on stuff long enough you start to just take the side effects for granted.
I was on some awful tablets last year (diamox) which meant I couldn't drink soft drink for the period of about 8 months, and didn't feel like eating anything for the first couple of weeks on them.
Steriods are always fun! LOL I've typically had the IV course of methyl pred, 3 times last year, and of course you get the munchies while that wears off, put on some weight with that extra eating, etc.
The most annoying one at the moment though, has to be my Rebif injection. Most nights I take it I get the side effect of it...cold and flu aches and pains. So seeing I can never tell if I'm going to get them till its too late I now just have to take some panadol after the injection anyway.
Glad to hear your feeling a bit better this week anyway.
Posted 22 June 2006 - 05:41 PM
I never got back here on Tuesady after all, I had plans to reply properly tonight to a couple of threads I have neglected, this being one of them, but since about 3pm today things have gone slightly down hill & I am buggered now, my left arm is playing up again & I have pain right across my upper back & chest, the fatigue seems to have kicked in big time & my head is pounding....so anyway, enough whinging I am off to have a hot bath while DH is out with the older two & Jebadiah is sleeping..
Older two at DC again tomorrow, so hopefully will get back then..well, thats the plan anyway..I have read everyones replies & am very thankful you all have taken the time to let me in on your world a little..
Posted 25 June 2006 - 02:02 PM
since about 3pm today things have gone slightly down hill & I am buggered now, my left arm is playing up again & I have pain right across my upper back & chest, the fatigue seems to have kicked in big time & my head is pounding....The life of a person with a chronic illness hey? <_< I know EXACTLY what you mean, I have days like that too and we all understand.
Posted 25 June 2006 - 04:04 PM
Most certainly we have days like that.
And sometimes the challenge is more to not over-do it on the days when you feel good, more so then they bad days.
Posted 26 June 2006 - 09:14 PM
Finally I am back to do decent replies My apologies for being so slack in getting back here, last week was not a good one for me
cin - Thankyou for taking the time to reply & share your staory. It must have been very difficult to find your DD also has sticklers, I will google that & check it out. I suppose in a way, the fact that you also share the same disease with your DD is a positive thing, as you will be able to understand where she is at & how hard it can be to grow up with Sticklers. IYKWIM? Can I ask if more children are an option for you? Feel free to tell me to bag off if you like, I won't be upset, I understand if you find that a personla question you would rather not discuss
agnes - Thankyou for also replying. WOW! Your post really showed me what strength is I saw your other post in regards to having another child & wanted to say goodluck, I think you are very brave for even considering it, many wouldn't...take care & I look forward to seeing a BFP from you in the near future
~brighteyes~ - Hello Lovely I remeber when you were diagnosed, my SIL had at the time also had her first episode around that time & you were both going through much the same thing. It sounds like you have now come to terms (maybe) with things in the past year or so...congrats on yourself & DH reconcilling successfully, that must have been a lot to deal with on top of your MS diagnosis. You are very lucky to have such wonderful support of your parents, it makes such a difference to know you are not alone
Your meds sound just lovely - not! It certainly chnaged everything doesn't it, once you actually have a diagnosis & then there is the fall out of that...trying different medications, finding the right ones..then getting dosage right, not too much, not too little..and then once that is sorted...there are the side effects to consider, does it ever end? What doesn't kill us, makes us stronger? yes?
Emma - Hello to another Lovely Thankyou so much for your post, I knew I would find you in here, you are such a support to so many on EB, so thankyou I also find the fatigue awful to have to deal with, also for me, with the *normal* fatigue comes the muscle fatigue..and so the muscle pain that comes with the muscle fatigue...like life isn't tiring enough with kids!! LOL..I think I will start to make sure I have one full day to rest during the week, I know if I am stressed or overtired I tend to crash..
It sounds as though your whole family pulled together & took the time to understand what MS is, that must make it easier for you, to know they care enough to take time..thankyou again for your advice & yes, your ramblings definitely helped
phezzit - Thankyou for your post My specialsit is leaning towards Lupus as my difinitive diagnosis, although it isn't difinite yet! It's not fun is it? He also said that although I ATM do not have RA, does not mean I won't develop it later, I have a strong family history & with my current diagnosis..well..it's a possibilty for later on..
It's also very humbling for me to see how courageous and strong these women have had to be and they've suffered far worse than I. It's helped me put some perspective on things I guess.
I have to agree with you 100% on that, reading through everyones posts has definitely given me food for thought, it has been good for me to hear of others & their stories, gives me the perspective I so desperatly need right now Congrats on your twins! You must be chuffed, very exciting..if not a little daunting too no doubt LOL..
Just to explain things a little
I have been diagnosed with Undifferentiated Connective Tissue Disease (UCTD), basically I have one or more Connective Tissue Disease (CTD) but as of this point in time, they are unsure as to which one/s I may have, as I have symnptoms that cover more than one CTD. That is part of what I find so frustrating, I feel like it's not *real*, like I am a hypocondraic because noone can tell me exactly what I have!
Anyway, I did want to write more but this has taken me ages, my left hand today is all but useless due to joint pain, so I will leave it here for now...I would like to maybe update again in the next day or so? If that is ok with everyone? I just feel like I need to *talk* to others who *get* it..to a degree..IYKWIM? I suppose I am still getting everything straight in my head..I have to adnit, the *forever* part of my diagnosis is a big part of my issues right now..
Thankyou all again & again, for replying & for allowing me to ramble on, you all have no idea how theraputic & comforting I have found it in here lately,
Lushy..still swimming xoxox
Posted 27 June 2006 - 08:26 AM
I've read the link you posted and that sounds most unpleasant! Aside from anything else, not knowing the definitive answer is the pits. So not knowing what it might turn into... that it the stuff of nightmares all by itself! When I was waiting to be diagnosed my neuro was reasonably sure it was MS, but wouldn't tell me that until he had the MRI results. I spent a few days wondering if it was MS or something else, something worse that might kill me (like motor neurone disease for example). Not knowing it was MS was almost worse than the actual MS diagnosis. Until the reality of the diagnosis started to kick in that is.
My heart goes out to you. The reality of a lifelong condition, and not knowing how bad it can/may get, is just awful, and very hard to deal with. I spent a while in the 'I can't talk to anyone about it' stage, and then a fair while in the 'talk it to death' stage. I've never had counselling, but sometimes I do consider it. (I've sort of been saving it up for after another dire pg experience so that it's 'worth my while'. Crazy but true).
The support of your loved ones at this point is very important. Knowing that they still, and will always, love you, no matter what, I found to be very important to me. The people who aren't there for you on the bad days are people that need to be gone from your life. My theory is that if they aren't there on the bad days then I don't want them there on the good days, because I neve know when a bad day will come and how bad it will be. I need people around me who are here for me no matter what.
I also found it very helpful to be able to get online, and find out all the information I could about MS. I found a couple of chat rooms which helped also. Knowing how much owrse some others were with the same illness made me feel quite grateful. I also found a couple of MS email pen pals on an MS chat board, and that's made life easier too, as I can chat back and forth about how we are and what's happening.
For now you need to look after you. Take the time to have quiet days (very very important) and get informed about your condition (obviously you have already started that). You'll find that lots of people have no idea what it is, and if they
ve heard of it they probably have no idea what it actually means to you as a person with it. I find a lot of personal power in knowing as much as I can about my condition.
We have a thread at the top of the board called TTC & Pg Support. We started it as just that (for women with chronic illnesses) but it's sort of turned into a general support of people with chronic ilnnesses. Pop along some time if you are interested. Most of the girls who chart regularly there have also posted here (Savanna, Jo etc) and even though some of us have difference conditions we are still able to offer a huge amount of support. You'd be welcome if you wanted to come along.
Finally, hope these ramblings have helped too. My heart goes out to you. I remember how scary it was to be in the early stages. The 'OMG, what's going to happen to m / OMG, this is FOREVER' stage and it still brings tears to my eyes. Big (((((HUGS))))) coming your way.
Posted 27 June 2006 - 10:57 AM
One thing I have found as a person with a chronic disorder is that unlike others, you are constantly changing your idea of 'normal' for you. Which people without chronic problems can find a bit hard to accept as your 'normal, but that's the way things go.
For example my 'normal' condition depending on what symptom is playing up could be any of these:
* absolutely normal, no syptoms
* numbness in limbs
* chronic headache
* blurred vision in one eye
And so on. But when you say you're fine, as that is 'normal' at that point, others start exclaiming at what you go through. Yet you do learn to view these things as 'normal' to your life, and just go ahead with things as you can.
Posted 26 July 2006 - 02:37 PM
hi, alst week my husband was diagnosed as having the Huntingtons Disease gene and though he needs to see a neurologist to determine if he is showing symptoms of the disease itself, he beelives he is. He is only 36, I am 31 and we have two kids, 4 and 2 plus are expecting our third in January. Too say it is a difficult time at present is an understatement but we are doing ok and are keeping positive.
It just makes you really appreciate each day you have with one another.
Posted 12 July 2007 - 09:43 AM
Thought this might be useful for some of the newer members to our section of the woods to see our stories, and put their own if they wish.
Edited by ~brighteyes~, 12 July 2007 - 09:44 AM.
Posted 13 July 2007 - 06:45 PM
I have a condition called Reflex Sympathetic Dystrophy. Though the doctors don't really call it that anymore, the new name is Complex Regional Pain Syndrome, but most of us who've had it for ages still refer to it as RSD.
Basically its a chronic, degenerative neurological condition, with the main symptom being chronic pain. For me it started from a blood test, where there was nerve damage. But it can start from any trauma to the nerves- such as an operation, broken bone, needle injury, spiderbite etc. What happens is instead of the nerves healing themselves over time, the signals going to the brain start to misfire, and before you know it the whole sympathetic nervous system is affected.
Most of the symptoms affect limbs- mine is in my right arm and right leg. But there are also other symptoms, such as fatigue, immune system problems, memory loss, concentration problems, headaches, insomnia, crankiness etc. In the limbs that are affected, there is muscle wastage, bone degeneration, skin problems etc. There's no cure, and no one treatment that works for everyone. We're all guinea pigs and have to just try one thing after another and hope it works for a while and we can have some kind of normal life for a while.
Although my rsd is going fairly well at the moment, after a "successful" ketamine infusion brought my pain levels down and mobility up, I'm feeling really down and depressed and very lonely at the moment. So I'm not really up for explaining how it affects relationships and lifestyle etc, but this paragraph basically sums it up anyway!
I am involved in some great rsd online forums and they get me through everyday, along with the support of my great DH and my gorgeous kids. But its hard, as you all know. Just the little things are hard, let alone trying to do something big- like a shopping trip or a busy day, or cleaning the house or just walking for a while. You know how it is.
I put details and links about rsd in my signature, in the hopes to increase awareness into this condition, as although there are thousands of people in Australia with this condition, and over 2 million in America, not many people have heard of it until it happens to someone they know. So hopefully having the links to my blog and some websites, I can help get the word out and increase understanding and knowledge about this condition.
Posted 17 July 2007 - 04:19 PM
Ok me now.
I still feel like the new kid on the block here.
Most of you have probably seen my story but here goes...
I have felt like crap for as long as i can remember.
It took a change of doctor last week to finally diagnose me with Fibromyalgia and Chronic Fatigue Syndrome. These are closely related and the symptoms can overlap so i guess it's just a matter of opinion. Since I was 14 when i had glandular fever I have had many recurring bouts of each, as well as depression and panic attacks (anxiety disorder). No one has ever linked it all together before. It is managable. It is not curable. I have had about half an hour of "Oh my god I am going to have to put up with this forever" and then I went into denial. I am still there.
I get annoyed with people because i have only just told family and close friends that I have quit work to focus on my health and it seems to have gone in one ear and out the other. I have already been asked by 3 different people to babysit their kids on various days, and the number of times people have looked at me badly or made degrading comments about me not being at work is rediculous. They can't see I'm sick. I'm the same as I always was, it just has a name now and I want some time out for me.
Sounds pety but I am thinking about doing up a fact sheet for everyone and sticking it on their fridges so next time they want me to drop everything and run for them they might think twice and realise that I simply might not be capable from one day to the next.
I have to avoid stress and unnecessary tiredness, I have to exercise regularly and eat well. So far since my diagnosis I have had one walk which ended in pain anyway. All my other plans have gone out the window.
I will be popping in here regularly for advice and to off load in the hope that someone will listen without judgement.
Posted 17 July 2007 - 05:16 PM
I am thinking about doing up a fact sheet for everyone and sticking it on their fridgesBridie I think this is a good idea. I did that with MS when I was diagnosed and I think it gave people a better understanding of it. It certainly helped me to clarify the important issues. Maybe once they really read what it's all about they will appreciate more what you are going through.
Posted 20 July 2007 - 08:09 PM
I am also new here. I have sjogren's syndrome (SS), diagnosed after my first bubba was born with complete heart block at 36 weeks, and it's been a roller coaster from there!
For me, it's an autoimmune disorder which attacks all the moisture producing glands in my body, and has mainly meant dry eyes, mouth, heart burn and dry skin. But I am currently experiencing my first 'flare up' in the form of chronic joint pain which had been managed by a short high dose of prednisone, and now I am trially the very frightening immunsuppresant - methotrexate! Oh, and they also think the colitis is related. I currently have primary sjogrens, but like so many of these autoimmune disorders, you can develop a secondary disorder, such as RA or lupus, and it's unusal that someone my age (34) would have SS, so I have what they call a severe case, so they watch all changes very closely.
To add to that, I was fortunate enough to have the SSA and SSB antibodies which on rare occassions when you are pregnanct, cross the plancenta and attack the connective tissue in my baby's heart. The catch is, although it's extremely rare, once it has happened once, it is MORE likely to happen with your next child, so I was fortunate on next pregnancy, with dexamethasone to suppress my antibodies, and a high risk complex pregnancy - I had a healthy boy (apart from the ashthma - would you believe - after all those steroids!!) but I certainly couldn't go through that physically or emotionally again.
Like others I have mainly focussed on my DD (who received her pacemaker at the age of 4) and have mainly been in denial about there being anything wrong with me. I also had lots of guilt about the fact it was my body that harmed my babies. But this flare has forced me to face my condition, and I have just taken five weeks off work to deal with it. I let myself be sad for the first few weeks, but really, I am so lucky that I have my two gorgeous kids, and it could be sooo much worse, I just need to accept, this is my lot in life. You also come to realise, everyone has their 'thing' that they are dealing with.
Sorry for the long post!
Edited by nmc, 20 July 2007 - 08:14 PM.
Posted 23 July 2007 - 11:53 AM
Nic - Welcome to this area of the boards! Sorry to read of your diagnosis. Why don't you pop up the the chronic conditions support thread stickied at the top? You'd be more than welcome.
Posted 03 September 2007 - 04:25 PM
Hi Lush and Emma
So true, so true.
Today is an utter struggle. I have just under 5 weeks of work to go, and, its going to be hard.
I think I might have a temperature, because my eyesight is a little blurry and I'm knackered.
Posted 15 January 2008 - 07:35 PM
I just thought I would add my story to the list while I am ok to type.
I grew up with my aunt having lupus and RA, and my mum was diagnosed with both when I was quite young, so I knew that we had a genetic disease in the family. As I got older, I had regular fevers with no known cause, and I watched my female relatives get diagnosed with either RA, lupus or both (every female relative over 32 is currently diagnosed with one of them, and 3 of the 7 below 32).
A few years ago, I got an earache that just didn't go away. I went to doctor after doctor, and all they told me was that is wasn't an infection.
I finally got in to see my mum's doctor (the books are closed, but they made an exception for me), and as soon as I told them what had being going on, they made the possible link, and decided to send me to some specialists. By then (2 years down the track), I had pain in my hands, feet, elbows, shoulders, hips and spine.
The first was an ENT (because of the ear being so much longer than the rest), and the doctor told me that I was too young for arthritis, and that I probably ground my teeth. Never mind that the dentist said I had no signs of grinding on my teeth.
I was then referred to a rheumatologist who looked at my symptoms and family history, and diagnosed RA. I was sent for a bone scan too see how much damage there is, and I have a large amount of joint damage in my upper spine, both elbows, both big toes, left ankle and left heel.
The hardest part for me is knowing that it is a progressive disease, it will get worse, not really better (hopefully medication will help here), and that it will be with me forever. I can also pass it on to any children I have.
My husband has been very supportive, and fees guilty sometimes that he can't make the pain go away. It is difficult when you are 24 and need grab rails to get off the toilet, can't manage stairs, and have trouble holding a pen.
They are also keeping a look out for lupus, as it is in the family, but I may be lucky and not get it.
<-------------- I am here right now
I can't accept this yet, but I am not as depressed about it as I have been. I am lucky that the women in my family are incredibly supportive.
Posted 16 January 2008 - 10:23 PM
Hi Lushy (and other poor buggers).
Ah well, might as well accept I belong here (anyone else hate admitting it?).
I was finally diagnosed this year, after 7 years of chronic pain, with a condition called Palindromic Rheumatism. It's a wierd form of arthritis that flits from joint to joint lasting in each joint for a few hours to a few days at a time. I get flares in both knees, different joints in my feet, hips, wrists, thumbs and fingers but knees are the worst.
My rheumy said that one third of PR sufferers recover in under 2 years, one third go on to develop RA and the final third are stuck with PR for the rest of their lives. Fortunately my RA tests came back neg so that puts me in the latter catagory. It has no cure either, but I consider myself lucky it's not degenerative. I have to have some xrays on my hands and feet to finally rule out the RA possibility but my rheumy is fairly confident it will come back clear.
Fatigue is a big trigger for PR. I remember being crippled with pain when my DD was having major sleep issues as a baby and I just fell apart. I was feeling so defeated. When I rang Ngala (WA sleep school) to get an appointment I was so hysterical the midwife had written in my notes "showing signs of PND" which I didn't have. That's why this time with DS I've been very conscious of getting his sleeping right asap so I don't fall into that hole again.
At the moment I am breastfeeding so I can't take the meds my doc prescribed until I've weaned but I feel like I'd rather live with the pain than give up BFing my son. So I am taking 1g (yes GRAM) of Omega3 which amounts to 9 Fish Oil capsules a day which seem to be doing an ok job taking the edge off and minimising the number of flares I've been having. Hopefully I don't stink like Flounder though .
I find it interesting reading everyone's stories that despite having different conditions we all seem to have had a similar mental reaction to our dx. I was/still am in denial about actually suffering anything. It's like if I say "ok I've got this thing called PR" then it's beaten me. That I will get better after some medication and some bedrest. It's bloody hard accepting that in 10 years time I will still have mornings where I need to be helped out of bed. I'm a savagely independent person so this reality sucks.
In a bizarre twist my mum recently told me about this terrible random pain she'd been suffering for a few months and I said "mum, I've had that exact same thing for 7 years". She couldn't believe it. I never talked about it before bc all the GPs I'd seen (stacks on DH's insistence) couldn't find anything wrong. I'd just been diagnosed before our conversation so I told her what it was and that she should take the info to her doctor. As it turns out she has RA. Did she have the PR precursor? Dunno.
Anyway, I've accepted that all the sport I played are a thing of the past but I also know I can still cycle and swim. Ironically pushing a pram is one of the worst things to bring on a flare
Edited by Cluckster, 16 January 2008 - 10:28 PM.
Posted 17 January 2008 - 02:32 PM
Make sure they keep an eye on your joints, as 20% of people with RA do not test positive for rheumatoid factor test (the main test), and only 30% test positive for ANA.
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