feeling misunderstood..

Posted Wed 28 Nov 2018 0.08am by Loopylou

Hi guys, hoping you might understand where I'm coming from and tell me what I'm describing is or isn't like psoriatic arthritis. and give me advice as to what to do!

If it isn't, psoriatic arthritis, I can go and look elsewhere for an explanation for my symptoms.

I have pain in my neck, both shoulders, the tendon insertions at both elbows, pain at both wrists, MCP and PIP joints, 3rd and 4th costochondral joints, My big toes are very swollen and sore such that in the last 3 weeks i have had difficulty walking and have had to buy shoes a size larger.

I have intermittent diarrhoea and dry eyes with intermittent itchy red eye.

i have an aching pain in my neck, upper arms, tenderness over my left 3rd and 4th costochondral joints, aches in my wrists, MCP and DIP joints, ankle and MTP joints.

I am constantly fatigued but perhaps this is normal fatigue of normal life???

Posted Wed 28 Nov 2018 7.24pm by OhNo_NotAgain?

In terms of looking elsewhere for an explanation, have you consulted a doctor?

Posted Wed 28 Nov 2018 8.10pm by wendyloish

Hi Loopylou,

I do not want you to be put off by this, but I did not understand the detail of what you were describing, so I Googled MCP. There were 139 things for this acronym, 140 for PIP. I realise that this may be cut down to size by only looking for medical terms, but overall it makes it hard to understand exactly what is troubling you.

Psoriatic arthritis is not that easy for a doctor to diagnose, so I would not hold my breath for an answer from the forum. That being said, you do not state that you have psoriasis in any of its forms. Especially in your nails, this would be helpful for a diagnosis. Have a look at the "Psoriasis and Treatments" section of the website, it may help you.

Regarding the intermittent diarrhoea, that is one of my irritable bowel symptoms. It may be useful for your doctor to know about this when you go to see him/her.

Good luck

wendyloish

Posted Wed 28 Nov 2018 9.07pm by Loopylou

sorry, my post didn't really make sense. Thank you very much for taking the time to read it and reply.

I was so upset last night, having had a difficult consultation with a rheumatologist and I was crying.

I'll start again...

I have psoriasis and one nail affected. I have had pains in my fingers and toes, neck, shoulders, wrists and ankles for about 8 years. I have had a period on sulfasalazine, then methotrexate, then 5 years ago a rheumatologist decided I didn't have psoriatic arthritis after all and stopped all medications.

since then, i have struggled on with aches and pains. 3 years ago I developed blood clots in the veins in my head which was unexplained (but can be caused by inflammatory disease amongst other things) and I had to have a year of blood thinners. I became deaf in my right ear, developed dizziness and loss of balance and had some difficulty finding words as well as severe migraines which have never left me.

Over the past 6 months, my joint/tendon pains have worsened. My big toes are very sore, hot, swollen and I am miserable.

I saw the rheumatologist yesterday and he says I have osteoarthritis (wear and tear) in my big toes and that I need to wear special shoes for the rest of my life and no more exercise. I think he was ready to push me out of the door until I asked him what was causing all my other pains. He reluctantly said it was possible I might have mild psoriatic arthritis.

So having said I just needed to take painkillers for wear and tear, he seemed to do a complete u-turn and say I had psoriatic arthritis after all and he might give me a biologic.

I feel he was ready to dismiss me totally, and now I feel like I've "made a fuss". Perhaps I should just put up with the pain/discomfort?

Posted Thu 29 Nov 2018 6.39am by wendyloish

Hi Loopylou,

I had a problem that X-rays suggested was arthritis for between twenty five and thirty years before, at the age of 71, I was finally diagnosed with spodilitis psoriatic arthritis. I live in rural Victoria, where there are GPs but no specialist services. My brother had been diagnosed by a rheumatologist a few years ago.

I found the answer, that I had psoriatic arthritis, only when I got told to lose weight, and went on a prolongerd fast. To my surprise every day of the fast I got better and better. The pain subsided, and I began to have more movement in my back and joints. You see, if I was suffering from only osteoarthritis, fasting could have had no impact on pain caused by "bone on bone". I do not necessarily recommend this as a diagnostic tool, but one thing you can do that would help is to change your diet. Eliminate inflammation causing foods from your diet. For me it was about 10 weeks on such a diet before the pain, which had been constant, was alleviated. From taking paracetamol and ibuprofen almost daily, I am now off them. I chose FODMAP as a diet which identified inflammation causing foods. It is supposed to be for irritable bowel syndrome (which I have as well), but it works for psoriatic arthritis as well. It has been a life changer for me, so I come on the forum to suggest it to others.

So at the least try giving up gluten and milk and restrict your fruit consumption to citrus, grapes, kiwis and berries. If you get some improvement, you might then consider doing the full FODMAP thing like me.

After taking methotrexate, my brother, like me, is now controlling symptoms by diet alone. Oh and I almost forgot, take Vitamin D.

And one more thing. Never be afraid to make a fuss. Who cares if they like you if you get what you need.

wendyloish

Posted Fri 30 Nov 2018 10.46pm by Loopylou

Thank you very much again for taking the trouble to reply and I will certainly try the FODMAP diet. I had been half heartedly trying it anyway but I guess you really have to do it properly to see the effects so i’ll Put more effort in.

And as for ‘making a fuss’ it’s not my thing at all but from what you say and from reading more posts on the forum it seems that a lot of people have had to push to get their diagnosis.

Thank you for your support and advice.

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