I have mild endo but severe pain, and ME. I've had five surgeries and every kind of hormonal treatment, including two straight years on zoladex without HRT (2007-2009) - this was an error and has left me with no libido and ongoing hormonal issues, but none of my doctors seem too concerned about this.
A couple of years ago, I noticed I was losing strength in my hands - if I have to unscrew small lids or do other specific motions with my hands, I have almost no strength. A few days ago I was carrying an oven tray with high sides and I completely lost my grip on it and dropped dinner all over the floor.
Around the same time as that started, I started getting severe pain in my tailbone when sitting down - weirdly, the pain worsens like an explosion upon standing/taking the pressure off my tailbone, then eases off.
I've been having hip pain upon waking for a couple of years - I put it down to the fact that I am on a lot of painkillers and don't move much when I'm asleep. This has worsened recently. Around six months ago, I started getting the same pain in my right knee - its pain and stiffness, whenever I lie down or sit in one position for any length of time - the pain made is very difficult to walk, bend down or move my knee at all. After a few months it went away and I though maybe I'd had an injury I didn't realise.
The hip and knee pain are now both very severe and I'm worried - I've never had a bone scan and I'm scared I may have problems as a result of the long course of zoladex, or arthritis which runs in my family.
I don't have a good relationship with my GP (see my previous posts!) and want to start seeing another GP in my practice but there's so much to go through with her, I don't know where to start.
Has anyone had these problems, maybe after gnrh treatment? If so, what was the cause? I'd be surprised if I have osteopenia or osteoporosis as I haven't broken a bone for years, but I haven't really fallen down or anything!
Thanks
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cupcakegirl
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hey there cupcakegirl, im sorry your having a hard time i get the same pains as you do in my legs, hips, knees, lumbar and every other joint ive got lol but ive been diognosed with HMS hyper mobility syndrome do you feel like your joints are going to pop out of joint? i hope you get it sorted and they do look into it have you been refurred to phiyso?
Thanks for replying - it doesn't feel like anything is going to pop out, it's more like inflammation and stiffness that's limiting my movements. It's quite hard to explain, but reminds me of when I broke my arm and had a cast, and my elbow being really stiff when they took it off. It's like that, although I only have to keep my leg in the same position for a couple of minutes, or really bend my knee, for the pain to get worse.
I haven't spoken to my doctor about it yet - I was planning to go to a new practice, but now I'm hoping to see a difference doctor at the same one, so I'll mention it to her when I go.
Hi, I noticed your comment because I have been having quite bad joint pain for the last few days, hip and knee but on the left which I don't normally have. I am on prostap and HRT but think it's probably from that. I have also recently started amatriptyline which I think is starting to help with my neuropathic pain but now I have this joint pain instead! It's like the pain is 'changing' rather than going away.
I was considering asking about a bone scan at my next appointment, this is my second lot of prostap.
I haven't read the other post about the GP yet but it sounds like you really need to change, how about moving to a completely different practise? I think we all need the help and support of a decent GP x
Thanks - I was initially planning to move to a new GP, but a female GP from the practice tried to remove my mirena last week and she seemed nice. The next closest surgery to me is twice as far as this one and I don't drive so I'd rather stay if I can, but the situation is being stupid at the moment. We'll see what happens.
The pain is really limiting me - moving around, sitting down and getting up are all quite painful now. I definitely need to speak to a doctor about it - it may be the beginnings of arthritis but none of my joints are red or feel warm. I wonder if there's any chance it could be caused by the very high doses or morphine which I've been on for nearly 9 years now - its not something I've ever heard of, but I'm sure it's not doing me any good.
I hope your pain eases off - I've taken amitriptylene before but it really exacerbated my fatigue so I had to stop.
bone and muscle pain is onr of the known side effects of the GnRH drugs. They may ease off or come and go through the cycle of the drug. Not nice though.
I was going to mention Hypermobility syndrome too, I have it and apparently having HMS makes you 4 times as likely to have endo :/ not sure why though!! Check out this website as they have the diagnosis criteria on there....
I have recently been taken off all hormonal treatment as progesterone can have a very detrimental affect on HMS sufferers. It does sound a lot like hypermobility, pain moving around from joint to joint etc.....I'd ask your GP to refer you to a rhummy consultant, they can diagnose you or any other rhummy type problem, good luck and for your sake I hope you dont have HMS xx
This is really interesting, thank you - this is going to sound really stupid, but I'm so used to being "double jointed" in certain areas that I didn't even think of that when HMS was first mentioned.
For as long as I can remember, I've been able to bend just the tips of my fingers on their own, and my fingers can curve backwards quite far. My thumb can reach my forearm on my left hand but my right hand in general doesn't seem to be as flexible.
I'm not sure whether my elbows bend backwards but, since I was a kid, I've been able to basically turn my elbows around, so that when my arm is straight the inside of my elbow points upwards at the same time as my palm. It's hard to describe.
Hmmm - I guess that's something else to mention to the GP as a possibility. It's very interesting about the link with endo - I wonder why?
Hi, I've been suffering with hip and leg pains and does seem worse when I've sat still too long. I'm not on any hormone treatment and have just thought its the endo annoying nerves, but after reading your last comment I had to comment cause I can move my elbow like you, my mum used to think I was stange when I did it and when I had knee pains years ago they said I was just very double jointed as could do the thumb to wrist move and maybe it was growing pains. I'm now 35 and so I really don't think that's possible anymore and have just excepted my knees hurt if I kneel for too long or its really cold. So sorry can't help much but its the first time I've come across anyone else who can do that with your elbow and I was tested for arthritis but was just told I'm flexible! I hope the doctors help you as it is obviously effecting you a lot, good luck with the new doc x
I've never spoken to anyone else with that, how interesting! I didn't explain it very well, I meant the back of my hand rather than my palm - but obviously you got what I was trying to say!
It's funny how you can be so used to something that, when someone asks you if you have an issue with it, you say no as it seems so normal to you.
I had to kneel down to pick something up today and it made me yelp - my knee is so stiff. It's almost like it seizes up really quickly - my other knee doesn't do it, so it's strange.
Going to try and get an appointment with the other GP soon and I'll post an update
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