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Weepth2k10Weepth2k10 Member Posts: 25
edited 14. Oct 2017, 06:20 in Say Hello Archive
Hi folks just saying hello.
For maybe 8, 9 years i've had lots of back, flank and rib pain at times very intense, were i would struggle to pull my self out of bed. I always put this down to work. I drive for a living and thought sitting for long periods of time was the cause. Around 2 years ago i decided to get it checked out, explained to the Dr, also told him i was always really tired. Had lots of bloods done. Kidneys, liver, lungs checked had ct scan done. All come back normal. Then August 2016 swelling appeared on my right ankle, stiff sore jaws.had bloods done again... uric acid levels were a little raised. Had x-ray done, nothing showing. Then around january my right knee began to swell, left ring finger is tight at times. Between January and April my bloods were showing lots of inflammation. Lots of stifness around my hips, inner legs were throbbing. Was referred to a rheumy. Attended end of june, lots of fluid was extracted from my knee. Consultant said i have inflammatory arthritis just need to find out what form of it i had, was given a kenalog injection and started on sulfasalazine working up to 6 per day. Since started on them my arms, wrists, legs throb everyday each taking a turn. Had Mri last week. Got rheumy next week for results. Seen rheumy nurse 2 weeks ago said my inflammation haf come down but tested posative on one of my blood test, rheumy Dr will talk about it. Since been back to my of GP and he told me my inflammation had gone up again. I just dont feel covinced i have arthritis.

Comments

  • moderatormoderator Moderator Posts: 4,082
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums, Weepth2k10, from the moderation team.

    I am sorry to hear about the pain and other symptoms you have been experiencing for the last 8/9 years. It is good that you are being seen by a rheumatologist and have started medication for inflammatory arthritis.

    It can be very hard to accept a diagnosis of arthritis; many of the members on here have had to go through a period of time, possibly of ongoing symptoms, before they actually believe the diagnosis is real. This is totally understandable and coming on here will really help you, as you share your story with others and they share theirs with you too.

    I attach a link to Arthritis Care’s information entitled ‘Do I have Arthritis’. If you haven’t already seen it, it might help to read it.

    https://www.arthritiscare.org.uk/do-i-have-arthritis

    As moderators we are here to help with any problems you may have using the message boards so feel free to send us a message if you need to.

    I look forward to seeing you posting on the boards.

    Best wishes

    Ellen
  • dreamdaisydreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. From what you have told us it sounds to me as though some form of inflammatory arthritic condition is the source of your trouble but (as many people don't know) there are at least a couple of hundred kinds - diagnosis can be tricky but the drugs used to treat them are the same.

    Sulph was the first DMARD I was given, I have a friend with the same arthritis as me (psoriatic) who is very well controlled with six tablets per day and has been for year; I joke he has the 'lite' version :wink: I stopped taking it last year because it wasn't doing anything in addition to the other meds I have to take to help matters. I began my troubles when I was 37, I am now 58 and, with a history of auto-immune troubles since birth for me this is more of the same. Is any one else in your family affected by any auto-immune troubles? I ask because these things run in families due to the genetic component but they can also happen out of the blue. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Weepth2k10Weepth2k10 Member Posts: 25
    edited 30. Nov -1, 00:00
    Hi Ellen, Dreamdaisy. Thanks for replies. I am 33 y/o. Like many others i always thought arthritis affected older people and bones. Having read a little about arthritis and educated myself ive come to realise no one is immune to it. I have a good couple of days and think iam He-man and i am fit an well. Then my body decides for me iam not He-man. Ive been off work for 7 weeks so far and tell my self iam fine to go back. It was my Gp that though i should take a break and sort my self. Having 3 kids and being summer hols i would have more of a break at work. Ive decided iam going back next week.

    Dreamdaisy, iam not sure if anyone in my family has any auto immune problems. I dont really keep in contact with them.

    Weepth2k10.
  • frogmortonfrogmorton Member Posts: 26,344
    edited 30. Nov -1, 00:00
    Hello and welcome from me too :)

    It does look likely to me too I'm sorry.

    It sounds as though the rheumatologist might have an idea if what the nurse said was right about your bloods.

    I am so sorry you have had to join us, but if it's any help at all it does take a LOT of getting your head around. Initially for me it was absolutely denial, then I was convinced my life was over.

    Now however I believe it's true and time has proven that life is actually pretty good. Different for sure, but still good :)

    Take care and keep talking to us - it helps!

    Love

    Toni xxx
    Love

    Toni xxx
  • stickywicketstickywicket Member Posts: 26,004
    edited 30. Nov -1, 00:00
    I'm with the others. It does sound like a inflammatory (autoimmune) type of arthritis. You have yet to get the full benefits of the sulph. Hopefully, when it kicks in properly, you'll have a bit less pain though it's not a given :roll: Sometimes the blood tests look really good while we feel awful. It is, however, better to have the disease under control even though it might not feel like it :D
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Weepth2k10Weepth2k10 Member Posts: 25
    edited 30. Nov -1, 00:00
    Hi folks.
    So ive been diagnosed with ankylosing spondylitis. Had seen rheumy yesterday MRI of spine and perlvis shows my spine is ok, but hips have lots of inflammation one worse than other. Bloods still showing lots of inflammation. Tested positive for
    HLA B27. Now this is where iam confused, my ankle is still swollen with discomfort, the right knee has no swelling but both knee and thigh throb.... not really painful, just discomfort with persistant throbbing. My shoulder muscles, elbows, wrists and hand ache..and take a turn each. I asked rheumy about this she said its all connected. Ive to continue with the sulfasalazine, but givin another anti inflammatory. If these dont work shes going to put me on somthing else cant really remember what this was though. Good news is she said i can go back to work.
    Weepth.
  • dreamdaisydreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    As far as I understand matters AS is one of the many kinds of auto-immune inflammatory arthritis - you have a working diagnosis so that's a start. If the sulph does not help matters then it's par for the course that another med (like an anti-inflammatory) will be added to boost effectiveness. Sulph is a DMARD (disease modifying anti-rheumatic drug) whereas anti-inflammatories are NSAIDs (non-steroidal anti-inflammatory drugs). They work in different ways to give relief / ease symptoms.

    I worked for many years whilst my arthritis worsened but had the luxury of being self-employed - my boss was very understanding. :wink: Work and arthritis can be at odds, I hope your employer will be understanding and make the suitable arrangements/accommodations for you to fully play your part in the organisation. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Member Posts: 26,004
    edited 30. Nov -1, 00:00
    It's always good to be able to put a name to things and, yes, I agree with your rheumatologist that knock-on pain crops up all over the place.

    How do you feel about the diagnosis? Are you any more reconciled to it?
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Weepth2k10Weepth2k10 Member Posts: 25
    edited 30. Nov -1, 00:00
    Hi stickywickey..well thats what the rheumatologist said it was a knock from this. Well ive accepted the diagnosis.... little over 2 years ago i pulled up my back garden up on my own with a spade, put down new grass decked the patio area, now some mornings i cant get out of bed on my own. On lodine with the sulph, what i will say the stifness doesnt hang around as long in the morning but waits on me for bed time. Still plenty of aches and pains. Just have to ajust my life to it a bit.
    Weepth2k10
  • Weepth2k10Weepth2k10 Member Posts: 25
    edited 30. Nov -1, 00:00
    Morning folks. Hope everyone is as well as could be. Just wondering if anyone has experienced a symptom ive been feeling. Started 3 - 4 weeks ago burning/stinging feeling around shoulder blade/arm pit area, the burning/stinging has stopped but the skin has become numb no feeling at all. Now it has started over the last week, on the out side area of my fore arm i get the burning/stining when stretching my arm out to reach for somthing no numbness though. Pain lasts for half minute but happens regular. Have Drs on Tuesday rheumy has requested blood pressure and pulse check. Rheumy is thinking of biologic medicine as sulfasalazine and lodine is not having the effect they wanted.
    Any advice would be appreciated.
  • dreamdaisydreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    I haven't experienced things like this, it's best to talk to your GP and let your rheumatology know. I rather envy your possibly going from sulph to a biologic so quickly, I had to fail on three DMARDs (which took years) before I was considered. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
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