Hello & This is my Story

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lawriejaffa
lawriejaffa Member Posts: 4
edited 29. Dec 2018, 17:46 in Say Hello Archive
Hi guys,

I just wanted to reach out and say hello, as I'm most certainly about to get diagnosed with some form of arthritis.

I'm 37, but for a long time I can remember having dull back pains, that would come and go. Most usually at the mid / to the neck area, sometimes the base.

I honestly think I became so used to it, that when I went to see my GP with a new and more recent complaint - I didn't even think to mention it.

For the last 5 months, I was experiencing a greater intensity of the aches, with similar dull pain (or tightness) on my fingers and toes. Then in the last few weeks, I began to experience fasciculations all over my body.

I've also had sore eyes, which my optician suggested looked inflamed.

It's been an anxious time, and like a lot of you, I've tested for a few things. Most recently I had an X-Ray (of just my spine) and a blood test, that revealed a high antibody marker.

SO...

I started to do my online research and discovered that my back/neck pain seemed to reduce the more I exercised them. (It seemed like a flag to me.)

Right now, I'm getting a second blood test to confirm the first ones reading.

Yesterday, I discovered that my Grandfather (god bless him) actually had ankylosing spondylitis...

I'd say, that you could imagine my fear of possibly, eventually being diagnosed with this... but I actually almost feel certain, and in my own way am rather grieving it.

I am concerned, that some of the periphery issues, (which I feel, is more at the tendons than the joins, which are not swollen etc) of having Rheumatoid as well!

One would be bad enough? So I wonder if any Spondylitis sufferers can let me know if they ever experience any short waves of pain sensations of the sort, or (very slight) numbness of sensation on their feet.

I will update this post with the official results as they come in if anyone would like that. I really appreciate, that this forum exists, and hope for any feedback :)

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi lawriejaffa,

    Welcome to the forum, well done on not relying on Dr. Google too much ;)

    Here’s our leaflet on ankolysing spondylitis just so you can get a handle on what you are fearing, remember medicine has moved on a lot since your grandfather had AS and try not too worry too much, the least it will do is make your symptoms worse

    https://www.versusarthritis.org/about-arthritis/conditions/ankylosing-spondylitis/

    There are things in the leaflet which you may be able to start now, symptoms permitting, mention them to your dr at your next appointment just to confirm though.

    The most important thing you can do now is not worry. You can live well with AS if you have to, you can tweak/adapt diet, activity and sort out medications with your health team as and when you need them. Worry and anxiety will make your symptoms worse, and dwelling on them does that too.

    Have you had an appointment yet to see a rheumatologist? It can be a wait, but you can take action in the mean time and keep yourself as well as possible.

    Christmas will be a great distraction, what are your plans this year!

    Take care
    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, I have psoriatic arthritis (PsA but with very little psoriasis) which in turn led to osteoarthritis and fibromyalgia. There are around three hundred auto-immune inflammatory conditions so diagnosis can be a long process: my kind of auto-immune arthritis is one of the sero-negative kinds i.e. no rheumatoid factor is present in my blood. It is true that there is a genetic factors involved with auto-immune conditions which is why they run in families, my parents dodged the genetic bullets they happily fired into me, in turn I decided not to fire any so the whole nonsense has stopped. I am in continual pain but used to it.

    No-one is sure why it happens or what triggers it, no-one is immune from the risk but if there is a family history then a referral to rheumatology should be automatic. GPs are becoming better informed about arthritis, it is not a condition reserved for the elderly and I hope you soon find some answers. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • JoeB
    JoeB Bots Posts: 83
    edited 30. Nov -1, 00:00
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    I was diagnosed with Ankylosing Spondylitis in 1979.

    Whilst X-Rays and inflammatory markers such as ESR and CRP can be useful they are not the be all and end all.

    The most common joints affected apart from those of the spine are the hip joints.

    Although AS and Rheumatoid Arthritis are not mutually exclusive I was told by a rheumatologist that it is extremely rare for them to occur together - he had known one case in thirty years practice.

    Although from your post my understanding is that you have not been formally diagnosed with you may wish to take a look at the National Ankylosing Spondylitis Society website. Additionally, the NHS Choices website has some information that may be of interest and it is regularly updated.

    Fasciculations are not uncommon in the general population - most people have probably experienced them at some point in their life. It may be worth discussing with your GP / Rheumatologist/ Pharmacist whether they believe taking a magnesium supplement may be of any benefit.

    Hope this is of some interest.

    Arthur
  • Sh8ron
    Sh8ron Member Posts: 13
    edited 30. Nov -1, 00:00
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    Just sending my love as I'm newly diagnosed too, with OA in both hips. Sharon x this
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