Fed Up

Hi,

I am new to here but wanted to see what others think rather than what the "experts" tell me?

I have been under my consultant now for 5yrs, have been put through all sorts of examinations, all different medications & have a diagnosis of Palindromic Arthritis.

I suffer terrible sleep patterns, have suffered depression since 1994, have terrible pains in my hands, left arm, knees, back & right foot (I broke my foot near on a year ago & it is still painful to walk on & to touch). My hands, knees & ankles swell to the point of not wanting to even venture out of bed some days, where the pain has got progressively worse over the years I have also ballooned in weight which is more than depressing because I physically do not have the energy or the strength to exercise as much as I would like.

I feel as if I have just been told "You have PA, get on with it." & because the PA drugs had no effect, am given diclofenac & paracetamol & brushed under the carpet.

Getting a doctors appointment is near on an impossibility, they will only give a telephone appointment & to be honest, I would rather talk to someone in person than on the phone, they can actually see what I am going through rather than hear it.

I know that you are not doctors or consultants but I believe that I have the majority of the symptoms of Fibromyalgia & not PA?

Please tell me your thoughts & views on this as I am sick of not getting the right help or treatment.

8 Replies

oldestnewest
  • Sadly, it's a familiar experience many people on the site can relate to. whether the condition is FMS or PA(I dont know that one), at this stage it sounds like they're not too sure, but often there isn't anything much they can do apart from help manage pain. FMS mimics other conditions too which only adds to the confusion. it helps to have a good gp who understands your needs. Also, they are only recently beginning to work out the finer points of common cause, and some doctors are a bit wary of conditions they dont understand themselves. none of this is much help to you, but on this site you have somewhere to go if you need support, and you will find people who are in a similar situation and maybe able to make suggestions, but always bear in mind there are no professionals here. we often pick up on results of research which i think tends to originate USA.

    I hope you get some rest tonight. Tulip xx

  • I really feel for you, I think it's a terrible state of affairs since the powers that be decided that we can't just phone in and get an appointment at the doctors. No wonder a&e departments are so busy. It would appear once you have fibro any other ailments are contributed to it. I do hope your get the answers your looking for and soon x

  • I have never heard of PA, but a lot of the symptoms you are suffering from seem very much like my own. I think you should ask your Dr for an appointment, write down your symptoms, so you remember to tell Dr all of them, and suggest that you could be suffering with FMS, and go from there. Wish you luck, please let us know how you get on. 😊

  • Must of what people are telling you is right demand a doctors appointment give him a list if your symptoms and ask him about fms I had to do this I was being treated for several different things and it was me who had to put all the symptoms together to reach a diagnosis of fms he did then agree and refer me to a specialist

    Good luck

  • I have just looked up palindromic arthritis as I had not heard of it and like fibro it appears there is no specific test for palindromic rheumatism so a diagnosis is based on your symptoms. At the Arthritis UK website it said that it may help if they can examine you during an attack because symptoms disappear once the attack has finished which with the way your doctor is operating with telphone consulations isn;t at all helpful to you. Taking a photo of the affected joints during an attack may be helpful. If the picture is good enough, it may help your doctor make a diagnosis.

    Many of us have other illnesses as well as fibro and quite a few of them like my osteo have very overlapping symptoms so it is sometimes difficult for even the professionals (not defending them) to say which symptom is caused by which illness. Illnesses like throid problems, diabetes and osteo can all mimic or have similar symptoms.

    It seems to me that as your symptoms are ongoing rather than in specific episodes that it does seem to be quite fibro related but again unhelpfully often we find that we do have periods where symptoms dampen down for a period of time and are there but bearable and then we can have a great big flare where we can hardly get out of bed which again sounds like yourself when you are going through a bad patch. Unfortunately, if you are carrying any excess weight it can make the muscle and joint pain much more pronounced but we all know how difficult it is to find exercise that we can do that does not make the pain and muscle fatigue worse.

    Was it your doctor or a rheumi who diagnosed you? I honestly wish I could be of more help.x

  • I am so genuinely sorry to read of how you have suffered and struggled and I want to sincerely wish you all the best of luck.

    You do not mention if you have seen a Rheumatologist? As it may be beneficial to ask for a referral if you have not?

    All my hopes and dreams for you

    Ken

  • It would not hurt to ask your GP to refer you to a Rheumatologist who can make some assessment on whether you have Fibro or not. Unfortunately there is no definitive test for Fibro. Much is based on reaction to pain across a number of pressure points, but it can give some indication of likelihood and possible better medications for the condition.

  • Hi. I don't have a dx of Fibro although I am wondering . . I don't have a dx of PA either ( Lupus/UCTD for me ) but there is a thread going at the mo about PA on the NRAS forum of HU. They may be able to give you some first hand advice? Hope this helps x

You may also like...