Hi. I'm new on this site although I have been on lung cancer plus a couple of other forum's! I have 2 fractured rib's was told that it was terminal cancer, 5 day's later they said it's Osteoporosis and I also have thinning of the Pelvic bones. Spine pain is excruciating, question would the Pelvic bones cause
pain ? I have no medication or support here but the.ros Nurses are wonderful! Long story with misdiagnosis . In my profile! I admit that I am desperate! Thank you.
I'm so sorry to read of your ongoing misdiagnoses and apparent lack of care by your hospital and some consultants, Danni. I can appreciate how abandoned you must feel though all of this, like no-one really cares. I'm not in the UK, but understand that the NHS leaves a lot to be desired at times. Hopefully some UK residents will jump in and advise you where to go from here. I've also had many misdiagnoses, lack of diagnoses and just plain stab-in-the dark guesses over the years, and have since learned the hard way to question and research as much as possible. Doctors don't know everything and are often overworked, so their patients aren't getting the necessary treatment or even the correct diagnosis - sad, but true. It appears that some of your worst diagnoses were just plain wrong or severely delayed. That should never happen.
Osteoporosis (which is effectively thinning of the bones) isn't painful unless you have a fracture. Then you know all about it! I've had diagnosed osteoporosis since 2012 without any problems until I fractured both my left and right sacral alae (part of the pelvic ring) and also my pelvis. Even though the fractures are not displaced, they really hurt at the time of fracture. Can you get an MRI done of your pelvis? That would be the best diagnostic tool.
If you have excruciating spine pain, I would say that the cause is the two fractured vertebrae you mention in your profile. You also say you have two fractured ribs. You should be on pain medication at the very least. If you have diagnosed osteoporosis (by DEXA scan), then some form of treatment would be appropriate given your lung cancer for which I presume you're taking medication which might be affecting your bone density. You should try to see an endocrinologist or rheumatologist (not sure which is more appropriate in the UK).
I feel very annoyed with your hospital and doctors that you are left to muddle through this dire situation on your own. It is really unfair and I do feel for you.
Best wishes.
I’m sorry to hear you were wrongly diagnosed. It must have been scary for you. I’m surprised you haven’t at least been put on calcium tablets. You could always get them from Holland and Barrett or the Chemist. They are both very informative. I’ve had seven in total back fractures and I know what the pain is like. I also know what rib pain is like and it’s not good. Have you had a dexa scan or anything?
I think you need to have a good chat to your Dr to find out exactly what’s going on and why they haven’t treated you if you have osteoporosis.
Hi. I , apparently, definitely have 2 fractured vertebrae which are wedge fracture's and it was diagnosed by Xray and also thinning of the Pelvic bones. My Dr. won't give me any medication because I have Diverticulitis, a large hernia plus other stomach problems although I told him what the Nurses at ROS told me about having injections or a drip and that would bypass my stomach but he wasn't interested! I take Vitamin D but I have found out that I have to be careful not to take them too close to taking Thyroxine which somebody on the Thyroid section told me....not my Dr.! It's an 8 month waiting list here for the DEXA Scan. This has all been going on for 5 very long year's so I must admit....I'm tired! Your pain must be awful. I'm so sorry. What medication are you on and have you managed to get your pain under control. Please take care and I'm here if you or anybody else wants to offload! You have done it for me and it helps so thank you.
All the best,
Danni
Hi Danni. I’m so sorry you have this. I’ve got Diverticular disease,in fact I’ve had my sigmoid colon removed because of Diverticulitis. It hasn’t stopped any treatment I’ve had for Osteoporosis. I was given Terraparatide for two years and now I’m on Denosumab. At the moment the Denosumab doesn’t seem to be working. I’ve had four more wedge fractures since being on it. And I think it’s worsened. I’m not too sure about thyroid problems so I can’t help at all with that.
My pain is ok if I sit and do nothing or I’m in bed. I still have to sit or lie carefully. I’m not too bad walking as long as I don’t go far. It’s things like bending over the sink to wash or clean my teeth or washing up. I’ve now bought a small dishwasher. I can’t carry anything like my handbag or anything. I have to take a shopping trolley with me to carry my handbag and even that can be too much for my back. It all gives me pain.
I know waiting times for anything at the moment is dire that’s why I’m not going back when I say I think my bones are worsening. I don’t think it’s going to be long now before the pandemic is gone or nearly gone. We just have to pin our hopes on that.
In the meantime don’t let them tell you that Diverticular disease can stop you having meds. I’ve also got tummy problems. So all that is waffle. The Thyroid I don’t know. I hope that helps.
I don't know how you cope with the pain you must be in. I know that we have to find our own way of coping but I'm finding it difficult to accept this way of ' being ' because of always walking dog's almost every day and being pretty active! I was diagnosed with Endometriosis when I was 28 and had a major operation every year for 3 year's ending in the final tube and ovary being removed and so then put on HRT for 16 year's which was too long so , went for a Mammogram and was told to come off them straightaway because the veins in my breast's were crystallising! So, I'm pretty used to having medical errors although the lung cancer was the worst! They did say that I will probably need to have the area with the Diverticulitis removed. Oh joy!I am so sorry for what you are going through. I think that you're amazing because you keep going and it sounds as though you don't give in. What pain medication are you on? I , also , think that we have to find our own way of coping. I wonder whether having fractured vertebrae affects the stomach pain. The Diverticulitis bouts are horrible too aren't they?! Please take care. I think we have to learn a new way of living re the Pandemic. I will be glad when I get my lung Xray out of the way. If you need to let off steam then please, feel free to offload. All the very best, Danni x
Hi Danni. I was offered pain relie from my Dr. But refused it as I don’t want to give up driving. I don’t drive far but there’s the Dr to drive too I have very thin skin which rips easy and I’m always covered in bruises and maybe I have to go to our minor injuries hospital. If I go to the shops I drive to them. Also my family are quite close and I can always drive to them. The alternative to pain killers is paracetamol. I can take two but if I take the next due ones I feel really sick. And anyway I’m not always in pain unless I do things.like bend over the sink to wash up or to wash or clean my teeth. I may get it sat in the chair if I haven’t sat properly. My worst bone that went was my T12 which I couldn’t walk with. I was in hospital for twelve days with that one flat on my back.. That was really bad. The lower ones are the worst and likely to affect your mobility. All mine are higher than my waist. Yes they are bad enough but I can still walk and do a little but if the lumber ones go you are in real trouble.
I know what you mean about giving up driving because I have had to stop because of the morphine. My fracture's are at the base of my spine where there is a big bony lump. When I first asked the Dr. to look at the lump he wasn't particularly interested even when I said about the pain! Apparently there are a few small bit's of bone which have flaked off. He still hasn't referred me to a Specialist and I have asked a few times but all I get is Covid this, Covid that ! This has been going on for over a year and I'm so tired. Why does everything have to be a battle ?Take care and thank you again.
Is that in the lumber region or the thoracic. If you’ve got small bits floating around that’s bound to cause irritation. Do you know what the numbers are with the letter. My fractures are all T something. It’s like I said if yours are in the lumber region that is the worst. I’ve got a friend that has lumber fractures and she’s basically in a wheelchair. With thoracic ones you can still get about. Obviously got some pain there. It gets really bad with anything I have to put my hands forward for. I can’t lift anything either. I’m so thankful that I can still walk but that’s today. Nobody knows what tomorrow is going to bring. Like many others we are all left to get on with things. All I can say is be very careful until you can be seen when everything settles down. Have plenty of food with calcium and take calcium tablets. I think my back has worsened but unless it’s dire I’m not doing anything about it. I was in hospital last year in June and the consultant said you can come back anytime so I think they are expecting more trouble.
Sounds horrendous,you poor thing.We are left to it I’m afraid.I had to fight my doc & get a new one before I got correct pain relief,the least they can do for you.Have you had xray & CT scan re exact diagnosis.I had to fight doc to even get that,he insisted pain was from kidney stone even after removed.Idiot.I had 6 #d vertebrae! Shout till you’re heard! Good luck.x
Hi. Thank you so much for your support. It's comforting, in a way, to know that other people understand how I feel and the pain the fracture's cause. I have the 2 fractured vertebrae and thinning of the Pelvic bones and I'm so embarrassed though because I made a mistake when I said that I have 2 fractured rib's! I don't have fractured rib's! I meant to talk about the 2 fractured vertebrae which are wedge fracture's but I'm on so much morphine and Opioid's that my brain gets addled! Then I also have the other problems which are in my profile. I hate the thought that you have also gone through having an idiot Dr.! I've had a few Consultant's who have been so arrogant and patronising and I lost my temper with one and my husband sat there with his mouth open listening to my rant! I don't swear and never used to lose my temper but to have misdiagnosed cancer for 15 month's when the tumour was on an Xray and for them to make out that I was a hypochondriac made me flip!I had no Oncologist, I had no support for the cancer and had Adenocarcinoma on my right lung and a Lobectomy and even my now G.P. admits that I have been treated badly. That doesn't help me! I have been begging for a DEXA Scan but have had an Xray on my spine which is when the Dr. rang me to say that it was cancer. This was at the beginning of this year but what has stayed with me and still upsets me is when he said " I will be with you till the end " then 5 day's later getting the phone call to say 2 wedge fracture's and Osteoporosis, not cancer! The pain is getting worse and creeping up the way and where the Dr. said, at last, that he would organise the DEXA , I think he has forgotten! He did say that it would take up to 8 month's. I have my annual lung Xray next week to check that the cancer isn't back so I will talk to the Radiographer.
So sorry! I have ranted again! Thank goodness for this site because it's the only support I have had and I'm SO grateful to everybody who has replied to me , given me advice and support when you are all going through such awful times so I want to be here for you too! I don't understand why some medic's have to treat us as though we are hypochondriac 's or stupid! Please take care. I do growl but I'm so tired with the pain which is spreading through my body. Thank you again.
All the very best,
Danni
I’ve had xrays scans and everything they can throw at me. But my bones were first discovered nearl four years ago now. The Consultant doesn’t want to know now though.
That's disgusting! Something has to change preferably the attitude of Dr.s and Consultant's but why do we have to teach them empathy and sympathy? I thought that they did the job because they wanted to help people?! Obviously I was wrong!
Years ago both nurses and Drs used to be really caring. I find the younger ones are much better. What I meant by they don’t want to know is that at the moment Covid has meant they have all had to go in different directions in the hospitals. They only will see the really bad ones like I was when my T12 went and I couldn’t walk. Even then once they got me out of bed they couldn’t wait to get me home.:I did have one consultant that was horrible. I asked him how likely it was that my bones would go again and he said quite sharply. “ well don’t fall again” I tried to tell him I didn’t fall but he didn’t want to listen. After I went out I thought well why didn’t I say do you ever read your notes before seeing your patients. But I didn’t say it because I was so taken aback.
My consultant has changed now and not for the better. My old one would ring me if I asked a question. The one I’ve got now seems more aloof.
My four bones went just before my second Denosumab injection. On my discharge form it said the Denosumab had failed. Well I didn’t know if I had to have another if it wasnt working so I phoned my Consultants Secretary. She put it to my Consultant and she came back with “ The Denosumab hasn’t failed it takes a year or two to work!” Whaaaat! I’m five months into taking it and I’ve already got four more broken bones. What will I be like in two years??
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