Osteoarthritis?

maddie1020

Hi all!

First of all, it's good to know there is support out there so I appreciate that.

This is my story, and I don't feel that I've got to the bottom of a diagnosis yet. I'm 48, and a few years ago I noticed that my elbows, fingers and toes started to ache. After a few months of this, I started to feel unwell, as if I had a virus (my lymph nodes flared up, I felt malaised for about 4 weeks). At the same time as feeling unwell, my fingers and elbows started to tingle and they got stiffer too. I could literally feel whatever this was spreading around my body as if the virus accelerated it. It was terrifying.

Very gradually over the years, the stiffness has turned into slight pain. I've never had any swelling or redness anywhere. The joints that are affected are my finger joints (not knuckles), inside of my elbows, toes, left ankle and left hip. I've had all of the rheumatologist tests which all come up negative. I've also had xrays which slow very slight osteoarthritis in my hands and an mri on my hands that shows absolutely nothing. Every morning my hands are stiff and I have to massage them and move around to get going. During the day I feel slight stiffness and a little pain and if you touch the joints they hurt.

The rheumatologist I saw said that I don't have RA and thinks I have osteoarthritis. I don't understand how osteoarthritis can suddenly spread to many joints bilaterally within a matter of months - it doesn't make sense to me. It seems more like an inflammatory arthritis but the rheumy told me it wouldn't be if my joints aren't swollen or red.

I am going to get a second opinion once the coronavirus calms down a bit more (hopefully). I know that you can't diagnose me, but I wondered has anyone else had a similar experience? I can't find any disease that seems to match the symptoms I've had exactly.

Best wishes,

Maddie x

Al

Hi and welcome,

It's great to meet you, you have come to the right place for information and conversation with others like you living one or more forms of arthritis

There are many here more than happy to share their experience as you share yours.

This link is for general information regarding any type of arthritis

About arthritis

https://www.versusarthritis.org/about-arthritis

Find out more about the different conditions, treatments and how to manage your symptoms.

if you have a specific question please post in the Living with Arthritis discussion or for general chat in the Chit Chat discussion. Just join in wherever you feel comfortable

Al

Mike1

I have OA which is now widespread in almost every joint, it has been building up for 20 years or so. When I was first diagnosed the Consultant said that I would end up in a wheelchair (which I have) but he could not say whether it would be 12 months or 30 years. I have never experienced the viral symptoms that you described but I can confirm that OA can affect different parts quite quickly. My OA was mainly in my spine and hands for about 15 years, then it crept into my knees; last year it got into my feet; this year it has hit my elbows and hips. At present it is only my shoulders that are unaffected although I have difficulty in putting coats and jumpers on and off which means it is there in the background.

maddie1020

Thanks Mike for sharing your experience with me. Sorry to hear that you have been affected badly by it.

I just find it odd that osteoarthritis can suddenly 'attack' different parts of your body very quickly. If that's the case then I wonder how can osteoarthritis be down to 'wear and tear'? It doesn't make sense, especially when you refer to joints like elbows which aren't weight bearing (especially for younger people who are affected). It's almost like it is a disease in it's own right.

Did your spine and hands become affected at the same time?

Maddie :-)

Mike1

My spine was diagnosed with Degenerative Facet Joint Disease and two compressed discs in my lower spine with an MRI scan; a year or two later OA was diagnosed in my hands and wrists with X rays. As my neck was getting worse more MRIs followed which was when they found OA in my spine as well. Since then it has been downhill!

maddie1020

Oh dear! That's not good. Well whatever I have, I'll just try to make the best of things whilst I can.

Thanks again.

crinkly1

Sorry to hear about your struggle, Maddie.

I had much the same frustrations and feelings about OA as you do when mine began in my late 30s.. Fortunately I initially saw a professor of Rheumatology who told me that the term 'wear and tear' is only accurate in referring to one form of OA - when a single joint has been damaged by injury.

For those who have widespread OA there are other causes which have still to be fully researched and addressed. There can definitely be associated inflammation and it's possible to feel quite ill when joints are 'playing up' but, equally that could be confused with a random virus attacking the body simultaneously so isn't conclusive.

The first signs of my OA were suddenly apparent (like Mike in hands and spine) - at the point at which slowly developing joint erosion caused pain and stiffness that showed up on x-rays and scans, couldn't be ignored and appeared to spread rapidly through my body. Quite a shock!

I've been luckier than Mike and, 35 years on, (I'm now 74) can still drive but use a power chair outdoors. I manage pretty well around the house with frequent breaks in a task and have grown used to the limitations in my hands and in general mobility thanks to various helpful gadgets, a supportive family and an invaluable NHS Pain Management Programme.

I had to take early retirement at age 50, which wasn't the best of experiences but I've avoided all but one major surgery - a shoulder joint replacement - plus a couple of keyhole procedures. I'm able to enjoy gentle cycling on local railways trails, which is brilliant and also swim in a warm leisure club pool.

Importantly I've learned to pace myself to keep the worst of the pain at bay. I use pain-relievers sparingly, mainly for night-time, and enjoy life enormously. Of course there are tough days and nights but I've realized that only I can take responsibility for my condition as there is very little real help out there for those with OA.

It's tough at the beginning and you are wise to seek a second opinion, also to research the subject if you feel that will help. You will get past this horrid stage and adapt to whatever comes your way. Progression of OA is unpredictable and your journey will be different from that of everyone else so avoid making comparisons and stay positive. Even if it gets as restricting as it has become for Mike and others there will always be things that make you laugh and this forum to provide support when there seems to be none elsewhere.

maddie1020

Thanks Crinkly!

Even though it sucks, I will make the best of things like both you and Mike have. I also know that I need to be responsible for myself as possible and make good choices, e.g. staying as healthy as possible, eating the right things most of the time, excercising and not getting overweight. If I do that, then I know I'm doing the most I can for myself and my body.

I totally believe that the professor of rheumatology that you saw is 100% correct. There are different variations of osteoarthritis that relate to inflammation. I'm going to try to keep the inflammation in my body lower by being healthier.

I'm glad to hear you are managing well and enjoying life! I also appreciate that you are giving me hope for the future which does seem bleak at times. Even though I have this problem, there's still a lot of life out there to live and it could be much worse.

Maddie x

N1gel

Thanks Crinkly and Maddie - I hadn't really thought about my OA like that before. It's too easy to get into a general malaise.

There's a very good video on Youtube by Phillip Hammond called 'learning to cope with post viral fatigue' which is pretty good advice for living with any long term health condition.

maddie1020

Thanks @N1gel ! I'll check that video out :-)

jooms

Interesting to hear that some feel that the disease spreads to other joints.

Reading up research papers one gets the feeling that osteoarthritis has some similarities with other types of arthritis. It is systemic in that immune-mediated proinflammatory products do circulate and perhaps do not discriminate between damaged and undamaged chondrocytes? This does suggest some degree of metabolic syndrome involved.

So should one assume that pain is an indicator of inflammation and that in such instances the immune system produces pro inflammatory products that cause further pathophysiology to the joint? If so then the adage " no gain, without pain" is not a useful physiotherapeutic approach to osteoarthritis and could, instead, be damaging. So while physio may be good for cardiovascular system and muscle strength there is that line where it might stimulate an inflammatory response.

Should monitoring of osteoarthritis progression, in addition to crude disability and radiographic observations, also include measurement of specific proinflammatory markers in the blood and synovial fluid?

The research into osteoarthritis treatment should perhaps be on discovering a way to block the specific inflammatory response that leads to what seems like generalised cartilage catabolism.?

The oft repeated "wear and tear" maybe the initial insult to a joint but it does not explain the progressive degeneration.

Mike1

The above post and similar that you put on the forum are way above my head and no doubt a few others of us too! What I do know is that there is research going on which has not yet reached any substantive conclusions or come up with any magical cure for Osteoarthritis at the moment nor, come to that, a medication which negates pain fully. Having perused the research paper which you referred to in another post it is full of words such as "suggested" "indicated" and so forth which means that these are ideas put forward for consideration; in addition, from Googling the subject of Osteoarthritis research, it would appear that there are a few contradictory papers in the ether. I am in no way trying to dismiss your comments.

jooms

Mike1

The research is definitely going somewhere but unfortunately not fast enough. Plenty informative stuff on the web.

While nothing conclusive in the research on a final treatment, each research adds a bit more information to what will undoubtedly lead to treatment. At present, explanations about this disability that i hear from physicians and therapists are pretty vague and uninformative.

My own life observations:

1. if you don't campaign for more arthritis research and appropriate health service then nobody else will because everyone wants more of the public service budget spent on their particular interests.

2. take charge of your own condition and that means trying to be informed

Chondrocytes do not repair easily but they can do (inner salamander capacity) if research can find the suitable conditions that the health service is able to provide. The catabolic effects of the proinflammatory products of the immune response need to be turned off and this would be a biochemical process ie medication.

Osteoarthritis, I believe, in the future will not be described as it is today: a degenerative irreversible disease. And so future treatment will not necessitate mechanical whole joint replacement.