Severe pain in spine and knee's. : Hi. I haven't... - Bone Health

Bone Health

4,485 members1,864 posts

Severe pain in spine and knee's.

Danni54 profile image
13 Replies

Hi. I haven't been here for a while but wrote previously because I was diagnosed with Osteoporosis and 2 vertebral fracture's with severe pain but now have awful pain and swelling in my knee's and my right knee periodically gives way . I asked last year for a DEXA Scan when the fracture's showed on an Xray and thinning of the Pelvic bones was diagnosed when stomach problems were being investigated. Nothing was done about the DEXA until my Dr. arranged one, again at my request, in February and I have been told that there is an 8 month waiting list! Does anybody else have these problems with knee's and what is the best thing to do for the pain. I'm on Opioid pill's, Fentanyl patch 12mcg and 5 ml Oramorph a day for stomach problems and the Oramorph for the spine pain and I have had an upper right Lobectomy for lung cancer and am in remission just now. Just a wreck really.....physically but in my head I have stuck at 28 ! I am so tired with this breakthrough pain though.

I was told a few month's ago that the Xray of the fracture's had shown cancer and the Dr. said that he " would be with me till the end " and then 5 day's later I had a phone call to say that it wasn't cancer but Osteoporosis. Long story and I really don't trust our hospital! The same thing happened with the lung cancer and they left me for 15 month's with a tumour on my right lung and no treatment. They didn't tell my G.P. or me about the tumour until I had pneumonia and was ambulanced in to hospital and I was asked why I hadn't had treatment for the tumour ... I didn't know I had one. I often wonder whether that has contributed to the state I'm in now because before that I walked our dog's for 2 - 3 hour's a day but after the Lobectomy I seem to have quite a few health problems and can't go for walks any more because of the pain in my spine and now my knee's. Does anybody have any suggestions as to how I can deal with the pain? Sorry to waffle ! Thank you for listening! Take care all . Danni

13 Replies
Uglow profile image
Uglow

Hi Iv have osteoporosis with vertebrae fractures. Initially terrible pain but have calmed not gone. I had a lobectomy in 2016 and have had all clear🙏 But I think chemo has a lot to answer for too. I think it leaves you with other problems. The whole thing is scary I got pmr last February frightened life out of me. It’s so hard to get a good doctor but that’s what you need. For multiple problems. They always say one thing at a time. Yes but Iv got all at once and need help. Try speak to Gp again. Best of luck. Xx

Danni54 profile image
Danni54 in reply to Uglow

Hi. I'm so sorry to read about what you are going through and I sympathise so much. I'm a bit older than you and when we are told that we have lung cancer it is so frightening and the yearly scan's are nerve wracking. I don't know about you but I thought that my health would come back after the recovery period from the Lobectomy but because our hospital left me for so long with cancer and no treatment, I have so many problems I lose track! I, absolutely, agree that we need a Dr. who deals with multiple problems but I had one at the start of my cancer but he retired early and I haven't found another good one who really listens and there are times when the pain is so overwhelming that I get scared . I'm on so many strong painkiller's but still have terrible pain. I don't stay in bed all day, every day and I do do my garden but then I'm in agony. Today I am in bed because the pain in my spine, knee's and stomach is overwhelming. Diverticulitis, a 'huge ' hernia, adhesions ++ is too much but I keep telling myself that the people who are here and on the cancer forum and all the forum's , all have a core of steel and we all have to keep battling because I, for one, am not ready to give up yet!If you get desperate and scared please feel free to private message me because you have been there for me and I'm here for you and anybody who feels desperate because of the lack of treatment, help and support from the medical profession who, I truly understand, are under extreme pressure.....so are we ! Anyway, I'm here if you need to offload.

All the best,

Danni

Uglow profile image
Uglow in reply to Danni54

Thanks danni x

Mavary profile image
Mavary

Hi Danni. I’m so sorry you have so many problems. I think the last two or three years we have all been left to it. I’m wondering if your swollen knee is down to fluid on it. Your Dr would be the place to go. If it’s fluid they can drain it off. Whatever it is you need your Dr to look at it.

Danni54 profile image
Danni54 in reply to Mavary

Hi. Thank you so much for your reply . I showed my Dr. when the left knee started to get painful and swollen but he couldn't be bothered with it but a new Dr. came to the house a couple of week's ago because I felt too ill to go to the Surgery and he was very thorough so I will make an appointment to see him. I thought that I would keep going to my usual Dr. who helped me through the cancer recovery. However, I think that he has been overwhelmed by Covid as he worked so hard through that to keep people safe . It's got to the stage now where it's not safe for me to walk downstairs because of my right knee giving way.Just wanted to let you know that I tutored an adult Art Group for 25 year's, put on Exhibition's for them and met some amazing people but also a few horror's ! I haven't painted since I had my Lobectomy because I have felt so ill but I have been setting up my easel etc. because I think that painting will help me mentally and I have the ideas but not the energy! Also had dog's and we have an 18 year old, deaf cat . Our last dog died 3 year's ago which was devastating and I am not well enough to walk a dog now plus our puss cat wouldn't like it!

Take care and thank you again for the advice.

Best wishes, Danni

Zac2018 profile image
Zac2018 in reply to Danni54

Hi Danni,Want you to know l’m thinking about you.

Your suffering and pain never seems to end.

Maybe getting taken in to the hospital you may get some investigations done. I think if they looked more into your pain and gave you answers it would help,

You must be so scared, Will msg later.

Keep your chin up as you always do. Tara xxx

Danni54 profile image
Danni54 in reply to Zac2018

Hi Tara. You are always there for me and such a good friend. Thank you. Thing's have not been great this year but we keep going don't we?! Except today and yesterday when I've been in bed. Grrrrrr! My body seems to have got used to the pain medication because it doesn't help much any more. Unfortunately, I am now completely dependent on Morphine .I want to hear how you are and what is happening with you so I will message you later. Have been thinking of you. Take care please.

Love,

Danni xxx

Mavary profile image
Mavary in reply to Danni54

I do painting too. But haven’t done any for quite a while. I think you’ve got to be in the mood for it. I’m glad that I could help a little.

Bluebell999 profile image
Bluebell999

It is hard to keep going when you have multiple things wrong and I think cancer is really hard to come to terms with, if you ever do.

Mine was kidney and the yearly ct scans are such a worry... just in case.... you know?

As far as the dexa scan is concerned, ask your doctor for a referral to a hospital with a shorter waiting list. You are entitled to go anywhere in the country on the NHS although 100 miles might be a tad too far 😀

Also ask for a referral to an orthopaedic surgeon, again check the waiting lists or at the very least ask for an xray of your knee. It is not safe for you if it keeps giving way and you must tell the doctor this in case he wavers. There is a little cottage hospital where I live and it is much easier to get a simple xray there, would you be able to access something like that in your area?

I have always found that taking your partner or relative with you to your gp appointment gives you a much better result. Almost like confirming it is not in your imagination, it shouldn't be so but there you are.

For any hospital appointments you could ring the consultants secretary, give her an update and say you are willing to take a cancellation at short notice. I have "skipped" the queue on several occasions. You will probably hear a recorded message as many secretaries are still working from home but don't be put off, they have all your information at hand and will ring you back.

This is all about you and your health and your prognosis of all your conditions, don't be fobbed off. Fingers crossed you are able to at least get some satisfaction that you have explored all options.

Danni54 profile image
Danni54 in reply to Bluebell999

Hi. Thank you for the suggestions which make a lot of sense. You are so right about cancer. There is always that niggle especially when it's coming up for your yearly scan. I live in the North of Scotland and we have to travel a long way if we want a different hospital and I don't know whether I could make a long journey now. Why is everything such a battle now ? I had Endometriosis many year's ago and did go to Aberdeen for treatment but ended up having 3 major operation's and the 3rd was a hysterectomy but I had a wonderful Gynaecologist there. I am a lot older now and with having multiple thing's wrong, all of which cause a lot of pain , it's difficult to battle the medic's! I will go and speak to this new Dr. though and ask for a referral to see an Orthopaedic Consultant. I don't understand why I haven't seen one before now but there's a lot that I cannot get answers to. Your suggestion about taking my husband with me is so strange because I said to him today that I really need him to tell the Dr. how bad I am and how much pain I'm in! I will show him your message! It's always really annoyed me that the medic's seem to think that we are imagining our pain and how ill we feel. A few month's before i got pneumonia, a stupid Consultant was making out that some of my pain was imagined and I told him what I thought of him! I didn't swear but got my point across and I'm, usually, very easy going but his attitude was so patronising. I found out that a lot of other women felt the same and he left and it was then that I found out that a tumour had shown on an Xray but was ignored for 15 month's. I wish that I could speak to Consultant's and get some of them to change their attitude to women! We shouldn't have to prove that we know our bodies and we are not hypochondriac's!

Are you in remission and when is your next scan? My lung scan will be January or February. Are you in remission? I really feel for you and totally understand what you mean about the niggles! Please take care and please let me know how you get on.

All the very best,

Danni x

Bluebell999 profile image
Bluebell999 in reply to Danni54

Yes, fortunately I am in remission but oddly enough I seem to have scans almost yearly because there always seems to be something wrong with my kidney and the rest of my waterworks. The last, a few months ago was for abdomen and pelvis because of blood in my urine, fortunately I apparently have leaky blood vessels, so nothing too serious.

Other times have been for repeated infections, kidney cysts and pain. Every time I have one it worries me silly. I had to have the kidney op twice as the doctor had not measured the tumour properly and hadn't got it all the first time, so there is always that question of "have they missed something?" versus "have they found something?"

It shouldn't make a difference if a women goes alone to a consultation but it does. Perhaps we tend to minimise things where men tell it just as it is. I am glad your husband will be with you, not only will be able to confirm your ill health, he can prompt all the things you forget too!

If you do manage to get an appointment at another hospital but are worried about the journey, perhaps you could split it up with a night or two away?

Another consideration would be if you think you might be eligible for hospital transport? It may be worth asking and if you are given it, your husband would still be able to go with you as your carer. I understand the journey would take a lot out of you but at least you may be able to get sensible answers and proper treatment.

Are you be able to get your knee xrayed in a minor injuries clinic or small hospital near to you? At least you would know what is going to happen depending on the result.

Although tbh you will probably be given physio at first. It is like a tick box exercise, physio, draining the fluid off, steroid injections and then finally replacement joint. Been there done all of that 🙄

Please do not put up with poor care, you are worth so much more.

I wish you well and don't forget you have friends here.

Danni54 profile image
Danni54 in reply to Bluebell999

Thank you so much. I am so touched that people here are so supportive and I have made a couple of really good friend's here. You have made so much sense and I really appreciate your support. The waiting list's here are horrendous and the NHS in the Highland's is definitely on it's knees! The DEXA Scan is done in a local Cottage Hospital and the waiting list is 8 month's. One of our Dr.s rang me about 3 week's ago and said that the hospital had been in contact asking whether I still wanted the Scan! I couldn't believe it !You have also gone through so much and you still are. I'm so sorry. I know what you mean when you say that you worry every time you get an infection etc. because having had 3 Oesophageal infection's and 2 lung infection's in the past 3 month's I have been worried. Having had cancer, the niggle is always there isn't it ? Having been told that I had spinal cancer and then 5 day's later that it's Osteoporosis I am worried now that, once again, our hospital has got it wrong and that there might be spinal cancer. I have no faith in our hospital at all.

I went to Aberdeen for treatment when I had Endometriosis year's ago and had a wonderful Gynaecologist there who, unfortunately, couldn't save me from a hysterectomy, so, no children. I will talk to my new Dr. about getting a referral and see whether he knows of a good Orthopaedic Consultant. I am getting worse and I have that niggle! Why are medic's so arrogant and why do they think that all women are hypochondriac's and don't know our own bodies and why do they think that we are stupid ? It makes me so angry!

Will write more tomorrow. Thank you so much for all of your support. It means so much to know that you understand how I feel. I'm here for you also if you want to offload or if you just want a chat.

Please take care.

All the very best and big hugs,

Danni xx

Fruitandnutcase profile image
Fruitandnutcase

Danni, I can’t add anything helpful but I can say I’m totally shocked at your lack of treatment. You definitely need to take your husband with you to back you up. I know down here you are discouraged from taking anyone with you to appointments but just say that your knee can give way at any point with no warning and you need your husband with you for support. Over the years I’ve decided that there are three ages of women. as far as a lot of doctors are concerned.

1. You’re far too young to have anything seriously wrong with you.

2. You’re middle aged / menopausal it’s your imagination.

3. You’re too old to bother about.

I hope you can get the help you need and deserve.

You may also like...