Not Yet Diagnosed
Posted , 8 users are following.
Hi everyone,
I’ve had bodywide chronic pain since I was 20. I’m now 25. The onset was sudden and I was eventually diagnosed with fibromyalgia. I had a lot of stiffness throughout the day, but from everything I read and heard this could be considered normal. I had gotten used to life with fibro and as long as I stayed active and took care of myself when I felt bad, I could control it pretty well. However, maybe four months ago my hands started getting worse. They’re so stiff after inactivity (usually mornings and evenings) that I can’t move them properly. It’s like my joints are made of rubber bands. My ring and little fingers are the worst. When I try to bend them at the big knuckle there is a point where I feel resistance and once I push through it they are pulled down. Same thing extending them. They don’t look swollen, but I can tell that they are and I sometimes get red spots over my knuckles. It’s in both hands, although my left seems to be worse (maybe because I’m right handed?) My feet are also starting to get stiff and more painful.
I’m seeing a rheumatologist, but she always seems disinterested in what I have to say since my hands don’t look swollen to her. My x-ray showed periarticular osteopenia, but she said this could be from long term low vitamin d. My bloodwork is always negative, although I did have weird bouts of anemia with elevated monocytes before I saw the rheumatologist. I’m waiting to get my hand MRIs done next week and I’m getting really nervous. They have to show something when I’m having these issues right? I’m so tired of the negative results and being dismissed. Not that I want RA or another condition, but I’m at a point where I need help and don’t want to take medications without a diagnosis. I’ve never had good experiences with prescriptions and I don’t want to jump into anything. My doctor suggested hydroxycholoquine at a low dose, but without knowing what we’re treating it seems like an unnecessary risk.
My job can be physically intense and I’m worried I’ll have to make a career change if things get worse. My hands are just so important for what I do. I work outside with tools for most of the year and I’ve been having trouble with grip, getting things open, and the general sensitivity of my hands. I sometimes feel like a burden to my coworker as he has to help me with things that should be simple.
I guess I’m just looking for advice and a place to vent my frustrations. Anyone out there who had a similar story before diagnosis? Does this even sound like RA? Opinions on the effectiveness of hydroxychloroquine? I’ll be thankful for any feedback. I’ve been way too in my head lately.
0 likes, 17 replies
elspeth97587 Erin91
Posted
Hi Erin. I am sorry you are having problems being diagnosed.
I had problems with my hands and wrists at the beginning as well as a frozen shoulder. I was seen by a Rheumatologist who said I didn't have arthritis. My stiffness in the morning lasted for about 3 hours which can be the first sign of RA. Eventually I had blood tests which showed seropositive RA. It's only since I moved back home and registered with a GP whose main interest was RA that things changed for me.
You need to check out what is available in your area and see if you can find another Rheumatologist who is more positive and can help you.
I hope you can get the correct diagnosis soon. If you have any more questions I am happy to help you if I can but the members of this forum have a great wealth of knowledge so just ask any questions you need answers for.
Best wishes Elspeth
anni_04141 Erin91
Posted
Hi Erin, I am in a very similar situation to yourself. I am 26 and my pain started 3 years ago. Firstly diagnoised with sero negative RA had problems with treatment and saw a different consultant at more of a specialised hospital who in fact said no it's not its fibromyalgia. Due to the two conflicting diagnoises I decided to seek another at a different hospital Iv had bloods all negative ultra scans shown nothing and now being told again it fibro as they have no answers. I do have sweelling around my knees and hands and wrists which they can't explain so having a load more tests and seeing a neuro. I'm at my wits end and like you as much as you don't want RA or another illness an answer to all your pain would feel like you can accept it more. I am also on prednisonle for another medical issue so know this dappens blood results but they don't seem to take this into account either.
With your MrI they will look for active inflammation or any damage. After my ultrascan they said had no active inflammation or any erosions. I haven't been able to work for the last two years and I'm in constant pain. My joints too feel like they are rubbing together especially my knees.
I understand when consultants look at you and disregard anything you say. It's sent me into constant anxiety and depression. I'm sorry I can't give much more advise than to say I know exactly how you feel and what your going through and I hope you find answers from your MRI.
Erin91
Posted
Hi Elspeth and Anni, thanks for your input. I hate the constant letdown with doctors. If you see a really "good" and well-known doctor you often have to wait months for appointments in my area (and they can often be very arrogant, the good name doesn't necessarily mean anything). I've seen so many doctors over the years that I've given up a little. I put off seing a doctor about my hands because I didn't think I'd get any answers. We'll see what the MRI says. Maybe this doctor will turn out to be good if the MRI shows something. Maybe I'll become more interesting to her. Unfortunately if the MRIs and extra bloodwork come back clean I'll probably just give it another few years and see if it gets worse...that's what I've resorted to so far.
anni_04141 Erin91
Posted
Hi Erin I understand my new consultant I am currently under when I first saw him said no way it's fibro alone I don't fit the criteria I.e have sweelling sleep well. He didn't disregard it but said it is definitely not that alone. After seeing him twice ended up with his register who stuck her nose in stopped the medication they were going to put me on and said its fibro again. Once again my apt last week saw a different consultant I really got my self in a state it's really easy for them to say oh it's fibro because there's no test proven for it and it's easy get out clause for them.
I have lost my faith in doctors and I do not trust them anymore even when I go to gp with a minor alignment I go home do research and worry. My current consultant told me the proffessor who I said at my last hospital was basically a genius. Seems like they didn't want to go against his diagnoise. Sick of it.
I know it's a long short and hasn't really done me many favours but all depends on area have you tired a specialised hospital? My local was useless and I have to give it to the hospital I'm under now they are doing all tests and money doesn't seem an object (NHS funding different in certain areas) it's so fustrating and same as you put off going Doctors and think this is it. Just don't understand with the advances in medicine these days people like ourselves have no answers and just left without a care. I can't afford private as I can't work. It's a vicious circle.
Also have you looked into any other conditions you think it may be in regards to other symtoms you may have?
Erin91 anni_04141
Posted
I've been tested for pretty much everything else including Lyme disease, lupus, MS, etc. I'm thinking RA is most likely bc of the bilateral symptoms. I hope the MRI tells me something.
lyn1951 Erin91
Posted
Thats what tipped the hospital into beilieving me, was a test they were not supposed to do in ER, but gave them an answer or part of it for my pain and stiff joints.
Was then referred to a rheumo, considered amoung the best in australia, even if shes a rather strange lady when you firt meet her.
I have had psorasis on my scalp and face my entire life, and its has deveolped into psorasis arthiritis, in my case I come back negative to the genetic tests, but rheumo says thats what it is.
I also come back sero negative to RA tests, but my joints are seriously swollen, sometimes worse than others, wet and cold do not help.
Rheumo started me off on a couple of instructions, lose weight, and start taking 6000mg of odourless fish oil, which I do, and am trying to do with weight.
Fish oil 1000mg capsules, 2 for breakfast, 2 for lunch, and 2 for dinner, with food, have found thats the only way I can tolerate otherwise get nasty fishy tasting reflux.
When we went away ;ast xmas to a remote area in australia, remembered all our medication and missed picking up the fish oil, and within a couple of weeks really started to notice the difference with stifness of joints, really got rusty without the fish oil, also noticed my skin got very dry, and lines on my face got a lot worse, all benefits of the fish oil that the rheumo had mentioned.
Went back on the fish oil when we got home, OHHHHH the relief, within a few days noticed the difference, I had been taking for sooo long had forgotton just how much they were helping.
lyn1951
Posted
I had to come off fish oil for a couple of weeks prior to hip replacement surgery, hips tottally worn out with OA.
Erin91 lyn1951
Posted
Not sure specifically about ESR and CRP, but every time I'm tested for inflammation it's negative so far. She mentioned another set of more in depth bloodwork if the MRI doesn't show anything. I'll mention fish oil to her at my next appointment and see if she thinks it's a good idea. Thanks for the suggestion! Can't hurt I guess. I've tried most of the recommended supplements and they haven't helped (except for vitamin D when my levels are very low, it always helps my energy levels).
Gloria814 Erin91
Posted
So sorry for all you are going thru. My blood tests always seem to be normal, so diagnosed with inflammatory arthitis after hand MRIs showed erosions in both. Minimal swelling , just one finger somewhat swollen.
So I do hope they can keep searching and find what is causing all your pain. Good luck with your apt and I hope you find a doctor who is knowledgeable and listens to you!
Erin91 Gloria814
Posted
Thanks Gloria, it is at least good to know I'm not alone.
sinead7777777 Erin91
Posted
Hi
Could be RA. But to be honest it's very hard to get a diagnosis It takes time.I would advise that you get another Rheumatologist if you feel this one isn't listening to you as he/she will never be able to diagnose you if they don't Listen to you.
Get yourself a new one and stand up for yourself .Only you know what your feeling ! !
Good luck
Erin91 sinead7777777
Posted
Thanks, I really just hate how long it takes to get all the testing redone when you look for a second opinion. They always want to start from scratch. But I think I've reached a point where I need to stick it out and try to get some answers. It always aggravates my symptoms when I start jumping through the hoops for doctors because of the related stress. Just going to an appointment makes me miserable and distracted for the week before and after. But I need to try and tough it out this time.
Emily1234 Erin91
Posted
Erin91 Emily1234
Posted
Not sure if you meant to ask me this, I'm not currently on any medications other than occasional ibuprofen.
Erin91
Posted
I was supposed to have my MRI today, but I got there and they said I wasn't in their system and didn't have an appointment. Even though I called their number and made an appointment. So frustrating! I have an appointment for next week, but now I have to wait all over again. I was really hoping to get it over with.
lyn1951 Erin91
Posted
Keep diary of who you spoke to, when you spoke to them, down the the time, ie 10.10am 17/7/2016, and the persons name.
Crazy I know, but I have learnt the only way to deal with the burecrats.
Time before last when we arrived at the hospital for cardio appt, for husband.
Dr opens file and said this is the old file.
I reached under my chair for my computer bag, which has copies of everthing, every letter the hospital has sent, and said this file is current, slapped it on his desk and undid the zip, all in order of appts, reports, lab tests,echo's, and sat back down and waited, while he flipped pages, that shut him up and one foul swoop.
He went on and took husband BP, and listened to his heart. Interesting that I have never been able to get a report on that visit from the hospital, have pointed out a number of times that we did attend, which they agree with, but when I ask for dr's report nothing.
Not good enough is it, and I have made my displeasure felt, reported to the senior consultant that no report from that visit, and there should have been, and he the consultant should have been made aware of husbands detioration, he was not a happy consultant, ripped into the junior staff in our hearing, and called a meeting in his office with husbands file immediatly, would loved to have been a fly on that office wall.
Never saw the Jnr staff again, always seem to be seen by the senior Dr's now, maybe there's a note on the file, watch the wife, she a nightmare, I will wear that label, nightmare, if it keeps my husband alive.
anni_04141 Erin91
Posted
You must be so fustrated. Maybe ring the hospital up and ask for a letter confirming your appointment when you go next time you have it in black and white and they can't make any excuses up.