Diagnosis Issues

Posted , 9 users are following.

Hi,

Apologies in advance if this is a bit rambling. I was diagnosed with psoriasis about three years ago, have tried lots of medication, seeing a dermatologist and currently on ciclosporin. The psoriasis is quite stubborn and unwilling to leave me.

My main query is relating to joint issues and the diagnosis process. For the past few years I have suffered from hip bursitis, plantar fasciitis, costochondritis, ankle swelling, back pain (in the morning and improves when I move) and my hand keeps swelling. My GP has suggested it may be psoriatic arthritis or ankylosing spondylitis.

Just getting concerned that my GP may think I am a hypochondriac as nothing seems to add up. My blood tests show inflammation. I had an x-ray on my spine which looked normal. Xrays on my hands and feet were normal, ultrasound showed slight fluid on ankles and wrists. I also do not have the gene that they test for.

Are these conditions difficult to use identify with tests? I have been referred to a rheumatologist and my appointment is in late June, has taken nine months to come through but I understand the NHS is under pressure.

Off work at the moment, I have kept going for months but finally admitted defeat. My back is really painful and can't get out of bed without a twenty minute battle, involving lots of whinging, huffing and puffing. It eases up during the day but is really painful when driving. Also feeling really shattered, work takes most of my energy and feeling sad because my lovely kids and husband seem to end up with the worst of me and they deserve more.

Anyway, this is starting to resemble an essay but wondering if despite normal xrays it could still be a AS or PSA or am I losing my marbles?

Thank you in advance for any advice

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  • Posted

    Hello Stlclair

    I have suffered PsA now for over thirty years, the problems you have are running true to form, You can get Psoriasis of the skin as well, the problem with the creams with the exception of one or two will thin the skin and mark your finger/toe nails, on occasions nails will become infected and sometimes rise out of the quick

    PsA will or can effect all your small joints, sometimes they will suffer destruction of various joints that can Affect the spine and hips knees and feet including the Ankle. If you have the skin complain the skin will thin and we get red type marks on the skin and Our skin has a problem where it breaks down far quickly than normal skin

    PsA is associated with Rhumatics. This makes the immune system much more aggressive and it attacks your skin and Joints

    In my case it has over the years attacked the Tendon Sheaves , and the internal parts there become trapped and roughed up as they try to operate over the Sheaves, this in turn affects the nerves that are running in the middle. Also Spine problems can be problematic and that can also affect  the nerves and disks.

    One way they try is the use of DAMARD medications, they were used in the treatment of Cancer to slow down the immune system, other groups called TNF Group medications Biologics are given when they are happy both drugs can work together

    Treatment for joint damage are the same as with Arthritis 

    One problem many may have is like me I was medically retired, that was thirty years ago.

    With Dermatology, Rhumi etc you will be able to get physio and Sun Treatment, sometimes that does help.

    I wish I could have lived out in Spain, the sun seem to help with this condition

    BOB

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    • Posted

      Sorry a further note

      There is a charity that is good to visit, PAPAA.

      They publish a magazine twice a year and have booklets and brochures you may find helpful.

      These explain treatments, and how to treat the condition

      BOB

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    • Posted

      Hi Bob,

      Thank you so much for your response. My big toe has been swelling too, my GP said it could be gout. Both may parents have this but my toe looks different than when they have a gout attack.

      Hopefully the rheumatologist will give me some answers. I saw one briefly a few years ago and they dismissed me rather quickly.

      I am really glad the sunshine is helping you but sorry to hear you have been medically retired that must have been difficult on many levels.

      Without a formal diagnosis I worry about work and don't want them to think I am being lazy.

      Thanks

      Claire

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    • Posted

      Hi Bob,

      Thank you so much for your response. My big toe has been swelling too, my GP said it could be gout. Both may parents have this but my toe looks different than when they have a gout attack.

      Hopefully the rheumatologist will give me some answers. I saw one briefly a few years ago and they dismissed me rather quickly.

      I am really glad the sunshine is helping you but sorry to hear you have been medically retired that must have been difficult on many levels.

      Without a formal diagnosis I worry about work and don't want them to think I am being lazy.

      Thanks

      Claire

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    • Posted

      Hello Sticlair

      I have had the Gout in my RH Big Toe and I have been put on medications for that as well.

      I will be on these medications now for the rest of my life. They tried to give medication for short periods of time, it became more of a problem, and that was it. Several years ago they needed to remove the nail as the nail was rising with Psoriasis and infections.

      I still have problems with the toe as the Psoriasis keeps filling the bed of the removed nail.

      PsA can be a real real problems, we have remissions, sometimes.

      BOB 

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    • Posted

      Hi Bob,

      That sounds incredibly painful. I can imagine it has a huge impact, not only difficult walking but driving must be agony too.

      I really hope that you have a reprieve with the medication.

      Thanks

      Claire

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    • Posted

      Hello Claire

      Yes it was, I was away on holiday and my Wife cannot drive. It had happened a couple of times and the Gout was stopping me walking at home.

      I do not really get the gout as such now, I do have the PsA  and the toe is still red at the moment, we seem to put up with some unfortunate problems with PsA

      BOB

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  • Posted

    As far as I've understood normal x-rays just mean you haven't got any permanent joint damage but does not mean you won't feel pain.

    Joint pain + plus psoriasis could very well be PSA.

    I was diagnosed with PSA with normal blood tests and xrays. 

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  • Posted

    Hi, I don't suffer from the skin psoriasis except for the occasional small spot. 

    I persevered in asking for an appointment for a rheumatologist although my Dr insisted it was fibromyalgia, an opinion based solely on me having ME/chronic fatigue.

    My pain seemed to be neither in bone or muscle. 

    After a lot of questions the rheumatologist asked if I had psoriasis in the family. If replied I had. uncles on both sides of the family though not my parents. My sister has psoriasis and my brother psoriatic arthritis. I was  the lucky one. He replied that I was not as mine was in my tendons. to prove he was right he asked me to lay on the couch , and wherever he touched me hurt. ( he referred to this in his report as "exquisite pain" .) He  wanted Me to visit my GP who would put me on NSAIDs.  

    I told my G P that I ws not prepared to go down this route until I had found out more information.  

    Information found included Tumeric and Ginger being an anti inflammatory. Realising that foods can be inflammatory I kept a food dairy.  I found the common factor causing flares of  inflammation and pain  was refined sugar. 

    By drinking ginger and Tumeric, with black pepper to aid absorption, and giving up all added sugar, I have relieved most of the pain. The only time I have any severe pain is when I have eaten out and forgotten to ask if food contained added sugar. It is surprising what some people add sugar to. Pizzas are now a no-no unless I make them myself. 

    I hope my story may be of some use to you. 

    Tumeric is an acquired taste, but better than the pain. Giving up sugar makes life complicated as a lot of savoury things have added sugar, so shopping takes a little longer. 

    Of course, our bodies are all different, you may find that something else triggers inflammation.  

    I hope you find some answers

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  • Posted

    HiPat26,

    That is really interesting, thank you. I have read a lot about turmeric and will look at incorporating it into my diet, currently on Naproxen, Tramadol and Zomorph. Really don't like taking all this medication.

    Regarding the tendon side, my hand swells up on a frequent basis and goes hot and feels like it will burst. I managed to see a GP when it happened and he thought it could be the tendons. I did wonder if that can be an issue and that even though the xrays don't show joint damage it could be there within the tendons. This also seems to give me flu like symptoms, aching everywhere and absolutely wiped out. I have not yet identified a trigger.

    This is all really helpful thank you. It's strange because I do not want any if these conditions but it is so frustrating when you can't put a name to it, makes me he like fraud, if that makes sense.

    Thanks

    Claire

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    • Posted

      Hello Clair

      The problems with PsA  and Tendons , they are rare to show up on XRays and scans.

      Also bloods can show negative for Psoriasis, results can be a problem. It is all to do with the white blood cell count that, the white cells are in control of your immune system

      BOB

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