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Date: 11.08.2009
From: Dena

Subject: I don't know what my arthritis is

Hello everyone.
;o)

I'm a 28 year old American gal living in Europe.
I've had some form of arthritis for about a two years but it hasn't been diagnosed until this last year and even then I don't know what type it is really. I don't have a Rheumy, but I am seeing a doctor who specializes in muscles,joints and sports injuries. Every time I ask him what I have he just vaguely says I have an a-typical arthritis and leaves it at that.
I'm lucky as in I don't have any swelling in my joints, but I do have pain. Lots of pain. My bone scans showed arthritis in my hips, my shoulders, my back, and my hands and I also have knee pain.
I was on cortisone, but the doctor got me off of that, and put me on mobic but that eventually stopped working. Tried another kind but that stoped working too. I've found Ibuprophen helps but am afraid of taking too much.
My doctor thinks my pain is more related to my labor intensive job. I used to do a lot of heavy lifting, but had to stop because of my pain. They moved me to another more administrative function with the company, one that now involves extreme stress and standing all day....which is causing my hips to start hurting full time now. I can barely climb stairs anymore. I can't kneel for more than few seconds, getting down on hands and knees hurts my back, picking up heavy stuff hurts my shoulders and my hips. My hands are starting to hurt more and more..but not all the time just sometimes. Sometimes I'm fine..but then sometimes I can barely open the top of a jar of pickles or wring out a rag when I'm cleaning.
At work I have one boss knows what I have, and realizes I'm in pain, but the rest of them either don't know or don't care. I've been forced to take on heavy lifting tasks that have left me crying in pain in the evening and most of my colleges just don't care. We're sort handed in this particular position I'm in, with people sick or on vacation so I'm working 41 hour weeks, just so everything gets done and I don't leave colleges standing in the cold..but sometimes I think I'm the only idiot coming to work in pain.
My hubby is understanding sometimes, but a lot of the times I get the feeling he just think's I'm being overly dramatic, or faking it to get attention. He's a sweet guy, and he loves me but not very helpful around the house. It's the way he was raised, his mom always did all the housework and the cooking and his dad did the gardening. He'll vaccum or something, but I work full time and I still have to come home start dinner, he'll usually help with the dishes, and he'll usually make his own sandwiches for work..but I still do all the cleaning, the laundry, the ironing...luckily he'll mow the lawn and takes care of the yard.
We don't have kids yet.
My entire family still lives in America, his family is nice, like a second family to me but they don't really get how much pain I'm in. They'll ask how I'm doing, and I usually just say I'm fine because when I do actually tell them how much everything really hurts I can see they think I'm being overly dramatic.
I think a lot of you know how about that kind of reaction.
Despite it all I am happy in my life, even if I would rather be home writing books instead of stressing my butt off at work. I enjoy living where I do in Europe ( except for the food..yuck :p) I'm happy with my house and my husband, we're not rich but we're not poor we can buy anything we want when we want it...in other words we're not wanting for anything. Somehow it seems I don't seem to have the right to complain when I know there are those out there who have it so much worse than me. I have a job when so many others out there don't, I can still work, even though it hurts and It exhausts me. We have a nice house and I have a pretty good marraige...
but I'm just tired of being in pain. I don't even remember what it was like not being in pain.

In a year or so I'd like to start thinking about having a child but I'm kind of scared. Will I be able to handle it? Will my pain get worse? Last time I went on vacation to visit family in America I tried holding my cousin's adorable baby girl, and I could only hold her for maybe a few minutes and that was it. I'm trying to imagine taking care of a child of my own.

Sorry to bore you all with my story...I just wanted to have someone to talk to who won't call me a whiner, I just needed to get all of this off of my chest. I don't really have anyone to talk to about it.

Thanks
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Date: 11.08.2009
From: val h

Subject: Re: I don't know what my arthritis is

hi that is why we all come on here to shout and stamp our feet look back u will find a piece about it sorry u r in so much pain and i also under gp and not sure if oa is what i have so know where u r coming from :-(
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Date: 11.08.2009
From: val h

Subject: Re: I don't know what my arthritis is

hi sorry about that had a visitor so go back to gp if in a lot of pain they can send u to pain clinic or rheumy u need help as 4 work i do not think they playing fair if something to heavy ask for help lifting it do not do it your self i only work 4 hours and that is enough some days in so much pain do not know what to do with my self lol. as get swelling in joints u will get lots of good advice from people who know far more than me just wanted to say hi and welcome we understand and feel welcome to come and have a good moan when ever u want one good luck hope u get some help soon :-)
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Date: 11.08.2009
From: Lynne

Subject: Re: I don't know what my arthritis is

Hi Dena welcome to the forum. Sorry your in so much pain. It's quite common for people not to understand about how much pain your in. I've had RA for over twenty years and my relatives still don't get it.
I really think you need a diagnosis. Perhaps you could ask you GP if you could see a rheumatologist. It is very important in the early stages of arthritis to have the right meds. It help with the pain but more importantly it will slow down the disease and you will have less problems in the future. Sometimes it helps if you take someone with you for moral support. Plus they are able to take more information in. Please try again. You should not have to suffer in silence. Take care xxx
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Date: 11.08.2009
From: Lynne

Subject: Re: I don't know what my arthritis is

Hi Dena just another thought. It's also common for the doctors to not take you seriously or just fob you off with oh it's just arthritis. You need to tell them how really bad it is which is not easy when you in pain. Make notes on your symptoms eg where aches. Worse during excercise, if you drop stuff, trouble putting clothes on ,lifting arms up etc, it's easy to forget all that stuff when they are asking you questions. You really sound like you need to see a rheumatologist not a muscle specialist. Hope you get the help you need. Take care xx
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Date: 13.08.2009
From: Dena

Subject: Re: I don't know what my arthritis is

Hello Val and Lynne ( that's my middle name by the way ;o)
Thank you so much for your messages of support.
What's this GP you all refer to?
I'm going to call today to see if I can get an appointment with my muscle specialist at the end of August ( you have to call two weeks ahead of time usually to get an appointment with this guy he's so frakking busy) I'm going to try to explain about my hip pain and back pain. He usually just examines me a bit for any restrictions in the movement of my joints...like if I can still move my leg up and down and sideways the pain isn't that serious, and my back always hurts but when I'm in his office it never does *LOL* I've been in enough pain now that I'm mad enough to stick with my guns. He's usually understanding as to my pain..but I still don't think he takes my condition serious enough. He's said if it gets worse he'll refer me to a rheumy but at the time he told me there weren't any close to my area..but I just looked it up on the net and found one in the same hospital where my gynacologist is located. Not close my patooty.
Right now I'm taking an Ibuprophen when the pain gets unbearable and trying to make it through my work weeks...I've got a weeks vacation the last week in August. Since none of my symptoms really correspond concretly with any arthritis, I had no RA factor in my last blood test (which was albiet last year)I don't think my doctor really knows what to think. I have pain with work and movement now..but sometimes movement does help the pain to go away. Sometime the pain is symetrical, sometimes it's a-symetrical (probably spelled that wrong. ;o) )If I sit still to long stuff also starts to hurt, I have no swelling joints, but I do have fatigue.

What is strange is I had hip pain once before, I even had a limp for a few days, but after a weeks vacation it went away. I had a good couple of months with a low level of pain, and now it's started back up again. I've found working a month or so and then taking a weeks vacation is the only way to make it through the year.

If I can get an appointment in the evening my husband will take me and be moral support. He can surprise me sometimes, I can think he doesn't care or hasn't been paying attention to my pain, then at the doctor's visit he'll tell the doctor about one of my symptoms that I hadn't even though to talk about, and he'll be sweet and understanding and everything. *LOL* I guess it depends on what day he's had at work and how many hours he spent in traffic to get home. He's got back pain too, he should know what pain feels like.

Know what I've found helps sometimes with the pain, just to help me get through making dinner or cleaning the house? I stick my I-pod in my ears, turn up the volume and just listen to music and sing along and get lost in the tunes...I find sometimes the pain is more bearable.
Don't they say something about the healing power of music? *LOL* It seems it works just as well with Carrie Underwood as with Chopin or Pink.
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Date: 13.08.2009
From: val h :-)

Subject: Re: I don't know what my arthritis is

hi u sound as if a lot of your what u have sounds like arther so get rheumy app not all ra shows in blood also there about 200 types of arther so u need to find out one way or another your joints could be affected other wise good luck will try music lol
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Date: 13.08.2009
From: Lynne

Subject: Re: I don't know what my arthritis is

Hi dena GP mean general practitioner in other words you local doctor lololololl
Arthritis affects us all in different ways. You can be well one minute in the day, next minute your in agony. It can affect any joints at any time and in no particular order. It can be symetrical or not. That's why it can be so difficult to manage. Just because your bloods do not show rheumatoid factor does not mean they can rule out arthritis. There is no ONE test for arthritis as such they are just possible indicators As to what it may be. And to rule out other conditions. The symptoms of arthritis can mimic other illnesses. That's why you need a rheumatologist who are more exparienced with this illness. Also you need the correct meds in the early stages of artheritis to stop damage to your joints in the future and to slow the illness down.
I've had arthritis for over twenty years believe me you need the correct diagnosis. Please go to your GP .... Your local doctor and ask them to refer you. Don't wait for your muscle specialist to do it. Plus if it is arthritis the meds take about two months to kick in before you get the full benefit. So the sooner the better. If you do get an appointment take your hubby along for support he sounds like he has been paying attention to you and I'm sure hell help as before.
Good luck and take care xx
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Date: 13.08.2009
From: Sandie

Subject: Re: I don't know what my arthritis is

Hello Dena,

Your problems sound very like mine. I have had my "pains" for over a year now. Like you, blood tests for RA were negative. You don't have swollen joints, neither do I. Fatigue yes, pain on moving, yes, after sitting twenty minutes it's stiffness and pain. Pains are symetrical like you. I have had bone scan which was fine, though there is OA in base of spine,knees and fingers. They still do no know what is wrong. I take Amitriptylene (small dose) and Arcoxia which do take the edge of, but some days I just want to scream through pain and frustration. Like you I work full time and then have to run a household. My husband is trying to be understanding and will do heavy lifting for me, but I basically do all the housework. Our first grandchild was born 14 months ago and like you I found I could not hold her for more than maybe 2 minutes, which really upset me. The last few weeks the pain is at a low level which means I try to do more - and then boy do I suffer for it!! Currently I have had 2 vitamin D tests and go for 3rd tomorrow, don't know why yet. Maybe something you could mention to your Dr. anything is worth a shot.
At least you can come on here and tell it like it is and everyone knows where you are coming from. Unfortunately arther is something no-one bothers about until it hits them, so can't really blame others for not fully understanding.
Hope you have a nice break at end of August
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Date: 13.08.2009
From: Brenda

Subject: Re: I don't know what my arthritis is

There are many fprm of arthritis, I been tested for RA and nothings there, so they did this gene test on me and it is called HLA-B27.. so now with all the blood test MRI and xrays, confirm I have a condition called seronegative spondyloarthropathy, I have the pain and swelling .. So my doctors what to but me on the med called methotrexate, and I have tried other drug , but nothing seem to work..
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Date: 19.08.2009
From: Jill

Subject: Re: I don't know what my arthritis is

Hi Brenda, I had the gene test bk in 2002...im also HLA b27 Pos... havnt met many of us with that defective gene... roten huh? did he say u have inflamatory arthritis then?...have u tried Enbrel...anti TNF drugs...?

Jill
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Date: 20.08.2009
From: Lynne

Subject: Re: I don't know what my arthritis is

Hi dena how have you been. Hope your feeling better. Had any luck getting reffered to a rheumatologist yet ? Take care xx
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Date: 22.08.2009
From: Dena

Subject: Re: I don't know what my arthritis is

Hey Lynne :o) Finally get on my comp, it's weekend now.
During the week I usually only have enough energy to make dinner and fall asleep on the couch.*LOL*
Home for a week now, time for some serious resting. ;o) I went back to my house doctor since he seems to care more than the muscle specialist. He took some blood for another blood test, and I'm going to a local hospital for a few x-rays of my shoulders, lower back, hips and thorax. He knows a few good Rheumys in a hospital and insists I go there, says they're the best in the country once he has all the info he's going to help me make an appointment. Problem is it's in one of the biggest hospitals here in Belgium, UZ Leuven..and it's like 25 miles away. Try going there for a simple doctor's visit..sheesh.
Ah well it's something at least. Monday I go for my x-rays and maybe by the end of next week we'll have all the info together and might have a better clue what I have. The House Doc wants to wait with any meds until he's SURE what type of arthritis I really have, since I'm on vacation I shouldn't have that much pain..I'll just stick to ibuprophen for now.
Hey Sandie, I'm sorry to hear you're having so much trouble with a diagnosis too. I think the best thing we can do is just keep trying and keep bugging the docs until they do something. What are those vitamin D tests you talk about?
Oh gosh Brenda I'm so sorry ...that sounds bad..what is Serongative Spondyloarthropahty? Man say that three times fast.


Take care yourselves

Dena
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Date: 22.08.2009
From: Jill

Subject: Re: I don't know what my arthritis is

Good Luck Dena

Lynnes on hols for a few days... it seems most of us in here have had trouble getting a Proper Diagnosis...makes me mad....plus some of the docs Fob us off..... Im glad u r getting the help u need, and I hope the xrays r clear for u, and not too much damage going on.... Dena I like Brenda have HLA b27Pos spondyloarthropahty is a posh word... the disease for example Inflamatory Arthritis is under the Umbrella of that word Spondy etc... I have Reiters disease , attacks soft tissues, ligaments, discs etc etc...also has left me with Inflamatory Arthritis...same condition as R.A. very similar, attacks the joints also... and same treatment...my rhummy has also thought i may be R.A. too as ESR goes bananas, as so much else is happeneing they r unsure if deffo R.A....oh well pain is pain is pain....at end of day ALL arthritis problems r terrrible!

take care ok

Love Jill
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Date: 22.08.2009
From: val h :-)

Subject: Re: I don't know what my arthritis is

u r so right jill pain is pain
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Date: 23.08.2009
From: Brenda

Subject: Re: I don't know what my arthritis is

Hi jill, I recived a new diagnoisi called Seronegative Arthropathies.. same thing with the HLAb27, but this was found after a MRI and bone scan, with the blood work of course.. I have flair up and the pain is bad, my biggist worry is the medication they want me on, which I will take now I been talking on her and realising it is best for me..
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Date: 28.08.2009
From: Elaine

Subject: Re: I don't know what my arthritis is

Brenda, I was reading through the various comments looking to compare my aches and pains and I saw you mention methetrexate. I would strongly advise against that, it is pretty lethal. It's a small dose of chemotherapy in tablet form taken at the same time once a week and can lead to all sorts of nasty side effects, I know because my mother was on it. Also you have to have regular liver function tests to see what damage it is doing/done to you.
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Date: 28.08.2009
From: Lynne

Subject: Re: I don't know what my arthritis is

Wow elaine so e anger there are you sure it's the mefscyou are against ??
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Date: 29.08.2009
From: Lynne

Subject: Re: I don't know what my arthritis is

Meant to say so much anger there are you sure it's the meds your against. I know they are scarry but so is this illness. It will have you bed ridden in pain with twisted imobile joints if it's not put under control. Better the devil you know that can be kept under observation and monitored with blood tests. Before any other probs can occur.
Sorry about the spelling was tired when I wrote it.. Get a bit dislexic then lololol..
Angela not having a go at you. Hope your well x take care
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Date: 29.08.2009
From: Lynne

Subject: Re: I don't know what my arthritis is

Hi Dena
how did all the tests go. Did they fit manage to give you a diagnosis of which form of Arthritis you may have?????
Have they started you on any meds yet. Wishing this finds you well xxx
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Date: 29.08.2009
From: jill

Subject: Re: I don't know what my arthritis is

Hear Hear Lynne./.... Elaine some of us dont have a choice....its a chemo med, cool wif me, helps kill offf any rotten infection, besides they dont use that for chemo anymore, i understand, its not that strong...ide rather have hair loss, than a cripppled bod sitting in a sheelchair.... like Lynne said, not having a go, but unlesss u r suffering this Insidious disease, well it donest help the ones that r scared to take it, that need it....or they will get sicker...take care Jill
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Date: 29.08.2009
From: Kirsty

Subject: Re: I don't know what my arthritis is

It's sometimes best to try what ever you can get...like Jill said, it's better to have some funny side effects than being REALLY REALLY ill.

xxx
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Date: 30.08.2009
From: Lynne

Subject: Re: I don't know what my arthritis is

Thanks for the back up ladies.. I don't usually try to give negative feed back, but I thought it was necessary in this case.. as Jill says it may put newbys off taking their meds when they are scared in the begining.

We all know how important it is to get this illness under control in the early stages so that there is less damage for the future. who knows they may even find a cure by then heres wishing lol
xxxxxxxxxxxx
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Date: 30.08.2009
From: Jill

Subject: Re: I don't know what my arthritis is

Elaine also with regards to having regular Blood tests, dont u c that as a goood safety net? u cant have a Good blood test one Month and then suddenly seriously sick Liver! that is the reason for having regular monthly Blood tests, they keep a close eye, as soon as there r the slightest change, they will stop the meds....and remember the Liver DORS repair its self...unless u need a New one of course, but we wld never get to that stage...... well ya mit eif ya never have a blood test done...which incidently isnt allowed, becos they stop the meds, if U miss a 2nd blood test......I know, cos ive got a poo memory and I was told they will refuse to give me MTX nxt time I miss my blooods......so Peeps hope that helpsa little..... we r Looked after so well....look how many ppl take Parecetamol and think its ok....there r thousands of ppl that dont know the probs parcetamol cause.... now they Cause Liver trouble, and we dont even get blood tested for that!!!..... hey ho...said my bit!Jilly does a cocky double Flipback otta this posting and back into reality
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Date: 01.09.2009
From: Lynne

Subject: Re: I don't know what my arthritis is

Love it when you get on your soap box. Good to air views sometimes jilley. Rolypolying on to next post ttfn
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Date: 01.09.2009
From: Elaine

Subject: Re: I don't know what my arthritis is

Sorry if my comment got someone's back up. The point is a great deal of people think that "doctor knows best" and are willing to fall in with anything they suggest. I always think it is best to thoroughly investigate drugs and check the manufacturer's side effects, as so many doctors, just copy out what they read in the MIMs. I know this from experience and also working in a clinic for a few years. I am not a health freak, but sometimes careful diet and avoiding certain foods does help. I won't worry anybody any more with my comments, it was just seeing that name "methetrexate" gave me the horrors and brought back some bad memories.

By the way, the liver can only repair itself to a point and my point was that once you are found to have liver damage caused by this particular drug, what next? Gold injections, don't even go there! I wish all the suffers well.
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Date: 01.09.2009
From: Elaine

Subject: Re: I don't know what my arthritis is

http://arthritis.about.com/od/arthritismedications/ss/arthritis_drugs.htm
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Date: 09.09.2009
From: Dena

Subject: Re: I don't know what my arthritis is

Hi all.

Got my x-rays back but there was no visible damage to my joints, plenty of space between them. My back's a little crooked, but not outside of normal paramaters. I have no infection in my blood and no RA factor, he did some extra tests for other arthritis genes but I still need to get back to him to see if those are in. No I don't have a diagnosis yet, but I have an appointment with a Rhemy. Unfortunatly it's not until the 20th October! So I have to wait awhile. I'm so tired of being in pain, and my work doesn't make things any better. I'm searching for lighter options, like answering phones inside of my company but I'm afraid my languages aren't up to snuff ( here in belgium they speak two languages Dutch and French...only my dutch is up to par) I'm looking into other positions as well further in the company; well another part of the company it's a big company; but I hesistate to leave where I am now. I know everyone, I have a very good boss, I have friends, I know my job...it's just....very, very painful. I'm a joker by nature, a goofball if you will I try to keep my humor but sometimes it is VERY HARD. *LOL*
I wish all of you well, I know we're all in the same boat and all in pain.
For christmas I wish for a cure for arthritis.
Who else? ;o)
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Date: 09.09.2009
From: val h :-)

Subject: Re: I don't know what my arthritis is

me. would be best there is no more pain
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