Saying Hi & asking for joint pain advice
Emily1984
Member Posts: 2
Hi Everyone,
I'm new and thought I'd introduce myself and ask for any advice you may have for me.
My name is Emily, I'm 28. I have always had creaky cracky joints but for the last year or so I have been getting a lot of pain in the joints of my hips, knees and ankles, aswell as along the bones of my feet. This has gradually gotten worse over time and I am now at the point where I have daily pain and stiffness.
Last week I went to see a Rheumatology consultant who said he suspects that I may have Fibromyalgia but sent me for blood tests and x-rays on my knees and feet. I followed this up today and both these tests came back normal, I have an appointment to go back in early November.
My problem with this is that I have read up on Fibromyalgia, and whilst I do have some of the symptoms like tiredness and memory problems, I also do not have a lot of them, like sensitivity to touch and the widespread pain described. I have also read that Fibromyalgia affects the muscles etc around joints rather than the joints themselves. This certainly is not the case with me, I feel my joints crack as if there is nothing supporting them, they cease and feel stiff and hot, and sometimes feel weak and like they cannot properly support me.
I am unsure when I return to the consultant whether to accept this diagnosis or whether to question it and push what else it could be.
Anyone with any experience of any of these things, I would welcome your comments and/or advice.
Thanks in advance,
Emily
I'm new and thought I'd introduce myself and ask for any advice you may have for me.
My name is Emily, I'm 28. I have always had creaky cracky joints but for the last year or so I have been getting a lot of pain in the joints of my hips, knees and ankles, aswell as along the bones of my feet. This has gradually gotten worse over time and I am now at the point where I have daily pain and stiffness.
Last week I went to see a Rheumatology consultant who said he suspects that I may have Fibromyalgia but sent me for blood tests and x-rays on my knees and feet. I followed this up today and both these tests came back normal, I have an appointment to go back in early November.
My problem with this is that I have read up on Fibromyalgia, and whilst I do have some of the symptoms like tiredness and memory problems, I also do not have a lot of them, like sensitivity to touch and the widespread pain described. I have also read that Fibromyalgia affects the muscles etc around joints rather than the joints themselves. This certainly is not the case with me, I feel my joints crack as if there is nothing supporting them, they cease and feel stiff and hot, and sometimes feel weak and like they cannot properly support me.
I am unsure when I return to the consultant whether to accept this diagnosis or whether to question it and push what else it could be.
Anyone with any experience of any of these things, I would welcome your comments and/or advice.
Thanks in advance,
Emily
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Comments
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Hi Emily,
Nice to meet you and welcome to the forum.
I don't really know how to advice you on this, so I just post to say hi to you. Hopefully someone will come along soon who can help you better.
You can definitely have an illness without having all the typical symptoms, but in your case it might seem you have too few to feel it is a positive match...
I would push for other possible diagnosis.
Hugs Pia.0 -
Hello Emily and welcome from me, too.
I don’t have fibro but I do have longstanding RA. I know from this forum that, unless people have classic symptoms and/or obliging blood tests, arthritis stuff can be hard to diagnose. I guess your rheumatologist will know that too. You say he ‘suspects’ you have fibro ie he’s not sure either.
While I know nothing of fibro, I do know that it’s not essential to have all the symptoms of a disease in order to have the disease so, the fact that you don’t have all the symptoms wouldn’t rule out fibro. Also, you say ‘I feel my joints crack as if there is nothing supporting them’. Well, if the muscles aren’t supporting them properly this could possibly account for that although the heat and stiffness certainly occur with inflammatory forms of arthritis.
Maybe, when you go back, you could discuss all this with the rheumatologist. From what you’ve written it sounds to me as if he’s regarding fibro as a ‘working diagnosis’ but keeping an open mind in case other stuff changes. It can all be very frustrating, can’t it :roll:If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Hi, I can't offer any help or advice, as I don't know much about Fibro.
I have sero positive RA, and my bloods are obliging enough to show it, but I do know this isn't always the case.
I just wanted to say welcome to the forum.
Wishing you well,
Numpty0 -
Hi Emily, Welcome to the forum, I guess this is my field!! I was diagnoised with having Fibromyalgia when I was 23yrs old. My legs kept giving way and I would end up on the floor. It only effected my right knee and lower back then. The doctors said it had come on from a fall I had when I was 12yrs old and had fractured my right knee cap. But like you the pain kept coming from joints rather than muscles. When my G.P (at that time) left the practice and I had a new G.P (the one I have now) and I went into see her and she looked over my notes and read about the diagnoisis of Fibro and the pain in knee and sent me for several tests at the hospital, and she refered me to a Rheumatologist who said from tests I had Osteo-porosis not Fibro. It was a long road of tests before I got the diognoisis. So see what the Rheumatologist has to say when you see him next, and share with him your thoughts and see what he says. I would write your questions on a pad so you don't forget anything you want to add.0
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Welcome Emily!
I was originally misdiagnosed with Fibromyalgia and then diagnosed with RA and now told I have Fibromyalgia too even though, I don't have most of the symptoms. :roll: It's tricky because there aren't any tests to either prove or disprove Fibro and because it's a syndrome, there are a huge range of symptoms. In addition, diagnosing arthritis that doesn't present in a classic manner is also a lengthy process. It's tough being patient when all you think is "I hurt!!"
I would say it's definitley worth going back to the consultant for another chat.
All the best,
Sophie0 -
Hi, I have fibro (almost 11 years) and arthritis confirmed in my knees comparing the pain is difficult and hard to know the difference. Fibro is not just muscles, it is also the soft ligaments and tendons that support the bones and where the joints meet and so it may feel like it is the joints, it could be inflammation in the soft ligaments and tendons...have a look at the tender points photo and see if that is where you have trigger points.
I am currently having tests for arthritis in my lower back and hips because the pain is getting worse and it has affected my mobility over the last 2 years, however it could be just a constant flare of my fibro..it wasnt until i had a mri of my knees that we knew it was arthritis and not just fibro.
Pain is pain no matter what it is called and wish you a speedy diagonises and some treatment put in place for you soon0 -
hi the reason you have to go back is so they can monitor you lots of these have very similar symptoms so it takes a while to work out what you have i still have only got as far as inflammation arthritis no given name for which it is but so long as they treating you all will be well. keep pain diary and take photos of any swelling all will help good luck we are here if you need us valval0
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Hi Emily and warm welcome form me.
There is no reason why you shouldn't ask questions, quite a lot of people on here have had diagnosis that have been change later on.
Take a list of all the questions you have, I do know that fibro is hard to diagnose, has are some of the other forms of Arthur.
I do wish you well with it all, and please let us know how you get on xxLove
Barbara0
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