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Your experience of patellofemoral osteoarthritis pain

AlanWatson1958AlanWatson1958 Posts: 15
edited 24. Dec 2015, 00:05 in Living with Arthritis archive
Hi everyone,

I would be very grateful for information on the experience of others with patellofemoral arthritis. Most of what I can see on the internet is about pain that only occurs when walking up or down stairs, kneeling, getting up from a sitting position etc. I occasionally get very short sharp pains when doing things like this, but I also have a less intense but still very painful stinging sensation that lasts for hours on end regardless of what I do or don't do. I now get this most days and it seems to be getting worse quickly.

I would be very interested to learn about the experience of others who have been putting up with this form or arthritis for longer than I have; do you get this continuing stinging pain too? Do you have any comments?

As background, I am a 57 year old slim and previously fit man. I don't drink or smoke and have a healthy diet. I was diagnosed 30 months ago with osteoarthritis in both hips, degenerative bone disease all up my spine causing lumbar and cervical stenosis, slight scoliosis and osteopenia. I also have pancreatic insufficiency and inflammation in my oesophagus, stomach, duodenum and colon, lots of gallstones, a kidney stone and cyst, fatty liver and an enlarged spleen. My skin is sometimes painful and becomes horribly itchy whenever I shower. I have had more tests than I could describe, but none has found a cause for any of these conditions.

18 months ago when I complained of pain in my left knee, the doctor said that that was fine, but that I had serious patellofemoral osteoarthritis in my right knee.

Six months ago, when I complained of pains in my wrists and fingers, he confirmed the early signs of osteoarthritis there too. I am pretty sure that I now feel twinges in my ankles and toes, which I will ask him to check when I see him in six months time. I don't have swelling, bone spurs or visible signs of inflammation in any joint and my joints aren't sensitive to touch. I am sero-negative and have normal uric acid, hormones minerals and immune system checks.

Anyway, what bothers me most now, and is getting worse very quickly, is the pain behind my kneecaps. The problem is worse in the right knee, where the doctor saw the signs before I felt them, but it is crystal clear in the left knee too where x-rays didn't show a problem 18 or 6 months ago.

I would be very interested to learn of others' experience.

Thanks and best wishes


Alan

Comments

  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I have two kinds of arthritis one of which is OA. This occurred as a result of the damage caused by the other one, psoriatic, which is a sero-negtive form of auto-immune inflammatory arthritis; being sero-negative doesn't mean that it can be ruled out. There are around 300 kinds of auto-immune inflammatory conditions, your mention of that infers to me that you have seen a rheumatologist - is that the case? If it was bloods as ordered by the GP they may not be aware that sero-negative arthritis exists - far too many people think arthritis comes in two kinds, OA and RA.

    My OA was officially diagnosed in 2011 and now have lovely bone spurs on both knees and both ankles. I gather that this is my body trying to help itself 'heal'. I am in constant pain all over the place, every move hurts something somewhere but I'm used to it and generally ignore it as best I can. I am fully aware that the pain levels have increased over the years as more and more joints have become involved, one affected joint leads us to throw others out of kilter as we adjust how we move, usually in an effort to reduce pain. Any form of arthritis is degenerative and progressive and I suspect this is what is happening with you. My auto-immune began back in 1997 with a hugely swollen left knee, but action wasn't taken until 2002 for a variety of reasons, one of which was I lost 2001 in being bounced between orthopaedics and rheumatology. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    You have a lot going on there, Alan, and by no means all of it arthritis-related though it may well play a part in which meds you can / can't take for your arthritis. My understanding of patello-femoral pain is that it is a disease of young adults. Maybe what you have is OA as in your hips and other joints. Once we begin to walk awkwardly because of pain in one joint it can soon have a knock-on effect on others. Whatever medication you take for your hips will work on other joints too. And many people will experience pain before there are any degenerative changes.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • AlanWatson1958AlanWatson1958 Posts: 15
    edited 30. Nov -1, 00:00
    Thanks for your replies. I'm sorry to hear about your problems, Daisy. I am well aware that my pain is nowhere near as bad as many others suffer.

    Whether or not patello-femoral pain is supposed to be associated with young adults, I certainly have it. Patello-femoral artritis was obvious to the orthopaedic surgeon from the x-rays before I had any substantial discomfort from arthritis anywhere at all, and the pain there is obvious to me now.

    The suggestion of psoriatic arthritis is interesting, although the problems with my skin are not like psoriasis: I have dry, painful skin on my calves and an increasingly large area there where I no longer have skin hair, and I get aquagenic pruritis, itch caused by water. A couple of years ago I also got pemphigoid nodularis, hard lumps of skin that had to be repeatedly frozen off, but I don't have psoriasis.

    I didn't even begin to get into my complications: I have cardiac syndrome x (abnormal ECG readings, chest pain and clean arteries); I have some trouble walking because of weakness in my legs thought to be caused by spinal stenosis, but three separate spinal conductivity tests all identified problems in different places, and none of them in the places identified by my MRI. The neurologists declared themselves baffled. I have an enlarged prostate (fairly normal for a man of my age) and Peyronie's disease - a bent penis. And an MRI of my brain shows that I have had a silent stroke.

    I have seen every kind of doctor you can imagine. A consultant rheumatologist at UCL Hospital was completely dismissive, saying that with no swelling in my joints and completely clear blood tests there was certainly nothing wrong with my immune system. My pancreas consultant (a professor of medicine who also spotted pericardial effusion, inflammation around my heart) was dismissive of this as nonsense: how many parts of your body need to have inflammation before you can be regarded as having an immune system problem? She referred me to another rheumatologist who has been treating me for the past year. He seems to be something of a star and only takes referrals from other consultants; he agrees that there is something wrong but has no idea what it is. He hoped that plaquenil to generally tone down my immune system would help, but things seem to be getting worse. I can't use steroids because my BMD is too bad.

    I'm seeing him again tomorrow and am looking for feedback on how unusual my type of knee pain is to know how hard to push the point when I see him.

    Thanks again for the feedback. I'm still interested in learning about more people's experience.

    Alan
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    If you definitely have some sort of problem with your immune system you could have both an inflammatory arthritis and OA. I do, as my RA led to OA. I take plaquenil (hydroxychloroquine) for the RA along with methotrexate. If there is an inflammatory arthritis plaquenil is a very mild DMARD and your rheumatologist might well want to throw another med into the mix. I hope your appointment goes well. Please let us know the outcome.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I can't believe I'm going to say this but here goes: have you been tested for Lyme's Disease? I recall a previous member who was diagnosed as having that, it's lately been in the news due to the founder of Carphone Warehouse being diagnosed (together with other members of his close and extended family). Given the depth and range of your other troubles (which seem to have appeared very quickly) this could be an explanation. As for the possible psoriasis, well, that comes in more than one guise. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • LadybrownLadybrown Posts: 130
    edited 30. Nov -1, 00:00
    Hi Alan
    Unlike most of the people here I am lucky enough to only have OA in my knees. I am 40 and was diagnosed 10 years ago (due to a slight deformity in my joints which means my kneecaps don't stay where they are supposed to).

    I would say that my pain comes in a range of flavours. There is the intense, sharp 'you've done something you shouldn't have' pain (when walking downstairs, for example). Then there is a sort of constant background ache which I find is better when I am taking anti-inflammatories (hopefully I now have one I can take, but it's been a long road...). And then there is an odd sort of pain I can only describe as a raw feeling. That can come on when I have been walking a lot or just for no reason at all - it tends to last a while too. I suspect that these are to do with the different types of damage in there but i don't know for sure.

    Are you on a good regime of pain relief?
    Best wishes
    Fay
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    We're a few days on now, how are you getting on? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • AlanWatson1958AlanWatson1958 Posts: 15
    edited 30. Nov -1, 00:00
    I must apologise for not giving an update sooner; I did write one, but it seems to have got lost in cyberspace somewhere.

    First, thanks to Fay for sharing your experience. I certainly get the occasional intense but brief pain that you describe, for example when standing up; perhaps my stinging pain is where the anti-inflammatories might help. Apart from plaquinil,I take aspirin for heart/stroke risk and also some other medicines like lipitor which are anti-inflammatory in addition to their main function.

    In response to Dream Daisy, not everything has happened suddenly; I have had allergies since young and odd things like a partially collapsed lung when I was 21 and a suspected (but not) heart attack at 40.

    A while after that I was found to have hyperhomocysteinaemia, which might contribute to some of these problems, and my pancreas doctor tells me that I had lost 80 of my pancreatic function, probably over many years, before I noticed it.

    Anyway, the rheumatologist was interested and concerned about my new endoscopy results and deteriorating symptoms. He told me that test of my salivary glands which he had organised was borderline and that he has a theory: he thinks I have a variant of Sjogren's syndrome which unusually affects other glands more than those in my mouth and eyes. He has given me some medicine to promote more secretion and organised some more blood tests. I have to go back in two months and also see my pancreas doctor just after Christmas.

    I can think of lots of objections to his theory, but there's obviously something wrong and none of the standard conditions fit, so I'm grateful that he keeps looking and hope that the tests will clarify things


    Alan
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    No apology needed Alan and I think we've all lost posts to cyberspace at some point. And they're invariably long ones :roll:

    I think your rheumatologist could be on to something. I have no medical knowledge other than that provided by many years of arthritis but it seems logical to me that a lack of bodily moisture could wreak havoc in many areas. If the rheumatologist and pancreatic specialist can liaise so much the better.

    I hope the new meds help. Please let us know how you get on.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • emmaadamsemmaadams Posts: 140
    edited 30. Nov -1, 00:00
    hi Alan i have this Exact problem in BOTH of my knees...i was told in November last year about it after an MRI . at the time my GP said there was nothing that could be done but in january This year i went to see a specialist as i could not continue and cope with the pain any longer . the specialist advised to have Surgery to correct it and to realign the Patella's ... i had Surgery in May this year on my Right knee . i was told that i would have my Left knee done at some point too as they dont like doing both knees together.

    however since my OP in may my condition has gotten worse .the pain is more intense and i have now been referred to a Neurologist as well as the Pain Clinic as there is nothing more my GP can do for me in regards to the pain .. i have Been going to Physio for the past 7 months all to no avail as the pain is still there and the muscle weakness it not improving .. he has now also discharged me as it is more pain related treatment i need ..

    i have also now got OA in both knees,hips and in my lower Back and i also feel it in my Shoulders .. all this has happened and progressed in the last year

    it is hard for the GP to treat the pain as they have no idea where it is coming from .. i have been to Physio for both my knees and my lower back .

    from the sounds of things you do have a lot of other things going on which in turn will make the pain worse if you are stresses,tired or even worried about any little thing ..

    i am sorry i have no other info for you or any ideas to help you but you are certainly not alone .. i really do feel some of your pain xx i hope you can figure something out xxx

    Emma xx
  • AlanWatson1958AlanWatson1958 Posts: 15
    edited 30. Nov -1, 00:00
    Dear Emma,

    Sorry to hear about your problems, which sound worse than mine; so far my pain is just very unpleasant, not yet completely unbearable.

    I suppose that you have had all the rheumatologolical tests done and found nothing. Even so, more and more evidence points to an autoimmune element in osteoarthritis, although most doctors haven't read the research or aren't yet persuaded. When it hits you in lots of joints at the same time, surely some systemic problem is more likely than wear and tear.

    You don't say whether you have any other medical issues. Even if not, it might be worth having a general check up - abdominal ultrasound, colonoscopy etc - to see whether they find inflammation elsewhere. I'm not convinced that my rheumatologist's theory is right, but I'm certainly grateful to have one who keeps on looking for the cause, whereas the first one was completely unhelpful.

    Sometimes you just have to be assertive until you find someone to held; your orthopaedic surgeon might help organise this if the spread of arthritis is obvious.

    Good luck and don't give up.


    Alan
  • Airwave!Airwave! Posts: 2,427 ✭✭
    edited 30. Nov -1, 00:00
    Don't get too hung up on names for arther, it'll just drag you down, deal with the effects and for most of us its mobility and pain and how we get through our days.

    Chin up, its Christmas!!!!

    Its a grin, honest! :xmas_cool:
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