any one else with FND feel like their bones are crumbling?

[Analogue45]

I have really bad hip pain both sides getting worse , all I can describe it is it feels like the bones are crumbling if that make sense I have bad pain in back but the hips are worse, dose any one else have similar problem with the bones , I thinking of going back to doctors but I really don’t have faith in them just fob you off

[210272]

Hi Analogue45,

I think Jon Stone or someone else involved with FND made a reference to 'crumbling bone syndrome' ages ago and I was shocked since what they are referring to (I think) is osteoporosis (although it is a good description of it - as is yours). Of course it may not be that but it is worth checking it out, if only for your peace of mind. In the UK drs have an algorithm they use to figure out if you need a bone density check (although my GP did say that the algorithm hasn't been updated recently and needs to be since they are missing some cases because of it). I hear you about some drs fobbing patients off since a lot of them have inbuilt biases which are hard for them to recognise but I would still make an appointment as soon as you can. I'd try to take someone with you who has seen how this is impacting your overall health and quality of life and ask if you can record the consultation since trying to take notes when we're in pain isn't easy, especially if we have brain fog. If any members of your family have similar issues then let them know since few of them have time to take a full medical history which should include a family history. If you have had any sudden weight loss or weight gain (including as a side effect of medication) it's worth mentioning that, too.

One of my contacts is a clinical psychologist who is concerned that FND is being over diagnosed in people with pain and that it may not be helpful for them to have a psychiatric diagnosis and be in DSM. So you have at least one great advocate on your side even if it is only at a distance. If your GP does decide to do the bone density check you can also ask for a referral for physical therapy to learn bone strengthening exercises and there are also various medications available although I tend to avoid them because I am 'side effects woman'

[Analogue45 in reply to 210272]

Thanks for getting back to me funny you should say my dad has osteoporosis among other things I try get appointment sometime ,and know what mean about side effects I’m sick of taking tablets lol take care simon

[210272 in reply to Analogue45]

You're welcome Some people do well on medications so I wouldn't dismiss them out of hand. The Mayo site has good information under this title: Osteoporosis treatment: Medications can help

[Analogue45 in reply to 210272]

Hi I’m just going to suffer with it it’s last time I ring doctors, won’t take appointments for the hip pains I have to ring this other place to make appointments, all I want is a doctors appointment I haven’t rang them in over a year , ,, I explained how how hard to get out ect ,,, just having a rant

[210272 in reply to Analogue45]

Please ring the other place since they are probably the specialists. Your human rights include having the best health possible and given that you have a family member with the same issues, they will have to take you seriously.

[Analogue45 in reply to 210272]

I just going to leave it I just to worn out with everything not worth the stress get overwhelmed with it thanks for reply take care

[210272 in reply to Analogue45]

I hope you'll reconsider since a) no one should be in pain if it can be avoided and b) the team I saw for the assessment were excellent and the information, advice and guidance they gave me was first class. Like many people living with a rare condition I've had some negative experiences in health care but having good ones (as I did with the assessment team) can help us regain some trust in the medical profession and we can build on 'what good looks like' so we don't settle for suboptimal experiences. I hear you that it can be overwhelming, especially if when we have other health issues to manage but I would still contact them if only so you can assure your GP that you did what they asked.

[Lady4 in reply to Analogue45]

If they won't give you an appointment and sounds like from your description and other member 210272 matched suspected diagnosis and family history, could you not go to Pals and kick up a fuss there?

[Sacsac2024]

I have pain in my hips and lower back but I think it’s from the way I sleep.

[Lady4 in reply to Sacsac2024]

Hi Sacsac2024. Could also be to do with posture. I suffer with lower back pain occasionally esp when the cold weather kicks in but when I had pain in my thighs which literally was out the blue it was down to posture and I was told to look at the way I stood in a mirror and correct my posture. Everytime I feel myself slouching washing up, I correct it. Also, I knew I was sitting wrong on my previous settee to justify the way it dipped at the back (I had my leg underneath me). Pilates can help strengthen the core too (something as I write, I make a mental note to start classes this winter).