Im still here

Hi everyone,

Yes im still here trying to find out what my many symotoms mean

I had a visit to my doctor today and she suggested i write a list of all my symptoms.

While thinking about this i wanted to ask if anyone had expereinced a feeling of walking on padded shoes, it feels like my feet are going further and further into the groud.

Any thoughts please

Thanks

Christine

12 Replies

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  • Hiya Christine! Hope you're ok otherwise? I have rubbish feet but mine feel like walking on pebbles as I'm walking bone on bone & have corns on the bases. I just wanted to say ask your Rheumy to examine them, mine wouldn't for 2 years & they're not good now so even if you get the "they're not included in the DAS 28" as I did plead, beg, whatever it takes, early intervention is better than putting up with this odd sensation. Something is obviously going on if they feel different. Have you thought along the lines of it being neurological? Might be worth asking.

    Listing your symptoms is a good idea & any questions you have as well, bullet-point style so your Rheumy can understand them if he/she wants to look at it.

    Good luck & let us know how you get on & what is made of your feet. x

  • I dont have a rheumy at the moment. I have seen a neurologist and just had a nerve conduction test. Yes i do think it maybe something to do with nerves. Someone once mention automic neuropathy to me which i could identify with.

    Can i ask you if the odd feeling in your feet was due to RA or something different?

  • Disease activity, so yes RD has had a really good go at them. Two years of them being ignored has caused difficulties walking. Finally she looked at them because I had little else to report at the time & she apologised she'd not listened to me. My MTX was increased & I was referred to a Podietrist & she had me walking barefoot (which I never do as it's too painful) to check my balance as my arches have virtually collapsed Of course I have no balance so wobbled correcting going sideways towards her! I also have hammer toes & the others are all clawed. I still have the feeling, that won't go but it is eased somewhat by the orthotics & soft soled wedge shoes. I have been told not to wear heels (not done that for many years) but I could wear wedges if there's only a slight incline. My ankles & the top of my feet are inflamed just now so waiting to hear if another increase is necessary.

    Are you waiting for an appointment to see a Rheumy?

  • The rhuemy i saw said i had fibro and that was that...he never looked at my xrays or scans....he said i did have swelling but not caused by RA and gave no explanation.

    You seem to have alot going on does it stop you doing things you enjoy....i dont have your condition but do have pain and fatigue so i imagine you have to balance things and pace yourself....

  • Yes it's tricky, not been like this for the longest time, forever tired (prob leading to full blown fatigue). Trouble is I don't generally swell because my meds work but just now I can sleep for Britain.

    I think a referral to a different Rheumy would be an idea. You''ve had bloods taken I guess? I understand seronegative RD (if you have inconclusive results) can be notoriously difficult to diagnose but if you get a Rheumy who looks at the whole & not just blood results (why on earth order x rays & scans & then not look at them, they form part of the diagnosis?) maybe a different conclusion will be drawn, not that I wish RD on anyone but if you do have it obviously you need treatment asap. x

  • Hi Hun,

    My tip for anyone who is trying to log information about their symptoms to try to get a diagnosis or get a particular medic to understand something is to get into the Internet and pull up some of those medical type of diagrams you see doctors use when they do autopsies and things like that. You will find full body ones as well as hands, feet and other crucial areas that you want to explain. Some even have veins/arteries or show organs inside the torso so that when you print them off you can highlight exactly where it is hurting and what sort of pain it is by jotting your notes underneath on the same sheet of paper. I have used this process for many years now and my own team of medics tell me they find it very helpful as they all have to work to a fairly tight appointment time for each person and to constantly read notes is very hard and to try to diagnose someone like this is difficult. By looking at a visual picture it registers more easily and they get the idea of what the problem is much quicker.

    I suggest this method to anyone who is starting out and they can keep dated diagrams in a folder to look back over when they need to. It is particularly easy for children to colour in the bits that concern them and get involved with their own health treatment programmes and the consultants can look at the picture and discuss with the child and parent what to do about it from there.

    Hope this has been of some help !

    Take care,

    X

  • Thanks, thats a really good idea.

    Its very embarassing when i look at all the symptoms i have and i feel like i wont be believed.

  • I feel your pain Hun. Mwah !

    Along with my PsA and Diabetes I have Behcets Disease. The average time to get a diagnosis for that one is around 10 years as it consists of so many diverse symptoms that don't seem to fit together so each time we see someone with a problem, they treat that and don't connect all the symptoms together ! The main problem there is also that the test results on a lot of things also come back as negative so because they can't put a name to it they tell you to go away because it is all in your mind. Lol. Eventually some of us are lucky enough to see a consultant who has heard of this very rare condition and can instantly spot the connections and direct them to the right type of medic to help them.

    That is how I know from experience just how important it is to log EVERYTHING even if it doesn't seem to be connected. There are a lot of these really rare little nasty diseases around and someone somewhere will eventually find out what your particular problem or problems are. Okay ? Mwah !

    Take care and keep plodding on !

    X

  • Thanks for your support...yes i will write down every little symptom...and hope someone takes notice.

  • They do believe you they just feel inadequate when they don't know what's wrong. Doctors like to fix people. Sounds like they are interested if they want a list of symptoms. Make your list, take deep breaths and you will get there. I hope they get to the bottom of it soon

    Take care

    Kiki

  • At least the doctor i have now is willing to test for many things...she even asks me have i seen anything or heard of a condition which it might be. Shes training to be a GP and has alot of empathy and shows it.

  • That's good, we need empathy.

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