Do i need diagnosis or 2nd opinion?

Looking4help

Hi,

I have some knee issues with my right knee. My Dad had arthritis since childhood. I only recently found out that my Mum and both her parents had osteoporosis, my dad also and my sister diagnosed with osteoporosis at 32 after knee surgery on her right knee for a hole in her cartilage.

After learning the family history I went to the local GP surgery.

The first time I had a problem with my knee I was 18, I had been highly athletic but stopped it all when I was working. I was doing a 12 hour shift standing stationary on a concrete floor and doing a fair amount of twist and swivelling, my right knee was quite painful and swelled up to the size of my thigh. Went to doctors and continued to use ice packs and knee supports. Over time it calmed down, rarely flared up and was able to do all activities.

2 children later I put on a lot of baby weight and was spending a lot of time on my knees. One day my knee flared up with a lot of pain and swelling. Ice packs didn't help, they increased pain and heat seemed more comforting. Every time I did any physical movement my knee would increase in pain and swelling. It was 2 years until the swelling stopped being a daily feature. Losing weight and knee supports and resting between daily chores helped. Exercise would cause flare ups making weight loss hard. Now it's another 2 years since, flare ups have happened following various activities and particularly when hormonal contraceptives were changed.

To be honest my knee is better now than 4 years ago. The main things that now cause a flare up are standing stationery in ques, to combat this I put my weight through left leg using right toes for balance to limit likelihood of knee flare up. The other main issue I have is the cold, if I am sat in a room with window open or cold air con it immediately makes my knee angry, an intensity like a radiating throbbing/pain occurs, it then takes hours to go away - like the cold got deep inside my knee. Once a flare up happens it's more susceptible to get aggrivated. The other issues I get are occasional locking up and occasional giving way. Cracking, popping sounds and ocassionally it feels like something deep inside the knee is caught, rotating the knee fully -cycle motion is very painful whereas walking or climbing stairs is mostly problem free.

I spent 4 years hoping it would go away in time. I don't like to go to doctors. A different gp at same surgery once refused to treat me for retained placenta on the basis "there is nothing wrong with you, just fat, would already be dead by 10 weeks". By 12 weeks I went for private scan and was extremely ill. So I always told myself my knee was not life threatening and it's better to not know than go through the drama of pleading with doctors for help and getting nowhere.

When I saw GP recently I explained my knee problems and he said it was not possible for me to have osteoporosis despite family history as only 38, but he agreed I could have dexa scan to rule it out. To be honest I don't think osteoporosis is giving me knee problems but it is good to rule it out. My gp explained that he won't diagnose anyone with any form of arthritis on the basis there is no cure, we just have to put up with these things. Ok, but I don't want a cure, I am just at a point I want to know what is going on with my body - if I know there is a problem I can do small things, change diet or way I do activities with rest etc. So his stance left me exasperated, I don't want to burden NHS, just gain knowledge.... He basically said there was no way I could have x-Ray or mri or referral to orthopaedic. In his opinion I have patofemoral knee pain.

To be honest while I can agree with his diagnosis I can't help but worry that there is cartilage damage, that if it continues to go undiagnosed it could lead to bigger problems... My husband was refused x-Ray 17 years ago after shearing ankle joint, which led to necrosis and his recent amputation 6 weeks ago.

Is there a chance that I may have some type of arthritis? Do I need to change doctors surgery to one that doesn't out right deny diagnosis? The doctor said I could have physio therapy, that was 5 weeks ago, so far not had any letter about waiting list or any form of acknowledgement. I should get my dexa scan results in another 2 weeks, should I wait first for results before then trying to find someone who will perhaps consider there could be another problem with my knee? It was hard for me to go to gp, after feeling Iike I was mostly fobbed off I have been feeling lost and didn't know where to go to get help or advice.

I appreciate any thoughts on my situation.
Thanks

[Deleted User]

Hello Looking4help,

No wonder you are feeling confused by your GP, well you came to a good place for help and advice. Our helplines team will be back on Monday to do just that.

Here is a link about exercise and arthritis, I hope it will give you something positive to be reading and trying out until then

https://www.arthritiscare.org.uk/assets/000/001/063/Download_Exercise_and_Arthritis_Factsheet_original.pdf?1441117109

Take care
Yvonne x

daffy2

Hello there
I'm not one of the Helpline Team, just one of the forum members.
Something which jumped out at me was your GP saying you could not have osteoporosis at 38. While it's true that it's highly unlikely OP would have any bearing on your knee problems, your age does not rule out OP, so I'm glad you are being sent for a DEXA scan. If so many family members have/had OP then you do need to keep track of that. You can get more info from the charity NOS.org.uk. Their website has been undergoing upgrades recently which has caused problems so there may not be a direct link to the forum there, but you should be able to access much useful info anyway.

As far as osteoarthritis is concerned GPs are not always as helpful as they could be since from their point of view management is painkillers, and possibly advice on weightloss, exercise etc. You may need to be persistent if you feel your concerns are not being addressed. This Forum is great for providing support and encouragement. It tends to be quieter at weekends, and most of the activity is on ChitChat and Living with Arthritis.
The Helpline (number at the top) are great for talking to during the week if you feel you are getting bogged down.

helpline_team

Hi looking4help
Thanks for your post to helplines. As has already been mentioned if you would like to discuss osteoporosis then the national osteoporosis helpline is the place to go.
But for concerns about how to manage knee problems you are in the right place. I'm sorry to hear about the difficulties so far. It's really worth seeing a physio because they tend to know more about the practical management of joint problems than many other health professionals.

Long term it can be really helpful to be doing the daily strengthening exercises they will teach you. If you think you might need to lose weight, you can ask a health professional to weigh you and give you a target weight to aim for - body weight can fuel arthritis so it can help to consider this.

I wonder if you might like to talk things over? You can ring us at the Helpline on our freephone in confidence.

We'll attach some links where you can see a bit more about pain, keeping moving and so on:

Managing pain: https://www.arthritiscare.org.uk/what-is-arthritis/resources/217-managing-pain

Exercise and arthritis: https://www.arthritiscare.org.uk/what-is-arthritis/resources/218-exercise-and-arthritis

Healthy eating and arthritis: https://www.arthritiscare.org.uk/what-is-arthritis/resources/221-healthy-eating-and-arthritis

But do pick up the phone if you'd like some support.

Kind regards
Guy
Helplines Team

Looking4help

Thank you all for help and advice. It's hard to reach out when not even been diagnosed as it makes you feel a bit like a fraud.... For now going to wait for Dexa scan results, have about week and half left of estimated 3 week for results.

It's been about 6 weeks since I saw gp, so either he lied about putting me forward for physio or it got lost in post, would have expected to hear about waiting list by now? All this waiting is making me consider if I should bite bullet and pay for private physio to at least get the right exercises...

Also might be worth making another appointment to try and insist on x Ray or referral as I don't think I will ever be happy without a "concrete diagnosis" or even a different gp at surgery that might not deny arthritis as worthy of diagnosis!!

daffy2

Waiting times for things like physio can be long and you may not hear anything until they have a slot for you, but try checking with the surgery. They may know what the set-up is, or be able to suggest how to find out if you have been referred(or got lost in the system!)

Looking4help

Hello, just a little update to let you know how things went:

1) Once it was 3 weeks after my dexa scan I phoned doctors to see if my scan results were back. They were, they were not planning on contacting me because there was nothing to talk about. In order for me to get a copy of my scan I had to put request in writing. Once I did that I was still not allowed a copy unless gp said it was ok. So I lied and said I had an appointment with specialist - they reluctantly gave me a copy. I was able to use Google to assess that I am not currently at risk of osteoporosis - hooray. The only thing that troubled me a little was a note on the diagnosis which may be there as a beware of false positive or could relate to me. It said "please note Concomitant OA/scoliosis in the lumbar spine may mean that BMD may be artificially raised." My gut feeling is that's probably on every report but that's a question for the future.

2) I phoned gp to find out about the physio, apparently the physio was refused - by who or when they wouldn't say. Apparently they didn't seem to think I would need to know that the physio I was waiting for was never going to happen.

3) As far as I am concerned my knee problems remain undiagnosed. In the last 8 weeks I have gained little insight, but recent attitudes are the last straw. Today I joined a different gp surgery and have an appointment for Dec 19. Hopefully I get a fresh new start and eventually an answer to the knee pain.

Thanks again for caring and sharing your advices, it's been infinitely more helpful and reassuring than dealing with my local doctors. That surgery has a large number of angry patients, people who were mis diagnosed or just felt patronized and abused - so at least I am not alone - but no-one should have to go through the "we couldn't care less if you are dead or alive attitude"!

daffy2

Hi there, I'm glad your DEXA results came back OK. The comment about False positive and OA is because if OA is present it alters the structure of the bone such that the DEXA could be showing better readings than is actually the case. This is the situation I have, and it's potentially a bit of a worry as far as my back is concerned. It also means that the Xrays done of my spine at the beginning of the year are not as useful as they might otherwise be for the same reason, which could make it difficult to see if there's a fracture. I try not to dwell on it as there is nothing I can do to change it, but I concentrate on trying to ensure that I give my bones as much help as I can through diet and keeping up VitD levels(reactions to drugs have ruled them out at this stage) and, where OA and other problems allow, exercise.

Looking4help

Hi Daffy,

Sorry to hear about your spine problems. I know many back problems can give a lot of pain and severely limit the type of activities you can do as well as not have a hopeful outlook.

I hope that the future can bring a better medical outlook. I am guessing you have already tried some hollistic therapies in addition to the practical management you are already doing.