Fed up with medical things

@gentleshores you poor thing being sent post to pillar and dismissed.

It sounds to me like you’ve got something like hypermobility, and your joints have become lax.

Has your gp referred you to try ketogenic or carnivore diet to reduce inflammation?

Do you have a nearby pool? Have you tried doing your physio in the pool?

I have hypermobility and regularly dislocate my joints including that rib popping thing.

Doing physio in the pool is brilliant, and a low carbohydrate diet with some weeks just high fat carnivore one meal a day reduces my joint pain down to zero. Eating fatty meat and eggs only, is your best bet!

PilgrimQuill

Gentleshores, I do feel for you. You say in an earlier post in this thread that you feel you need someone to look at all of your symptoms together, not in isolation. There has been a huge amount of really helpful suggestions made here also, all good advice.

Last August I strained a tendon in my groin. I rested it too much and filled my time knitting. So I strained my shoulders and neck. So I decided to take up short walks - and my legs threw up phlebitis and varicose vein inflammation and the groin strain returned. So I got depressed and nervous indigestion flared up. GP diagnosis when I finally got an appointment (and she didn't even bother to see me just sent message via paramedic who did) was 'bad veins, bad luck'.

Two months ago, I consulted a classical homeopath. She listened and took notes of all symptoms. First to cure was the depression and the legs - no more problems. Then the shoulders and neck issues. Nearly all gone but treatment continues. Nightmares started and also being addressed. Itchy skin started and was dealt with and went.

Homeopathy might not be something you have considered in the past - but it does work. And it is holistic. And it does help the body heal itself of tears and stress fractures.

Whether you decide to do this route or not, I do hope you find the best way forward for you. All good wishes for your recovery.

Thank you. I have used homeopathy before actually. I need advice on what can be used due to being on blood thinners. It's a vicious circle there as well. If I could get more mobile, I could get off the blood thinners.

I read your OP gentleshores and thought, yes so am I, fed up with medical things. I’ve had a strict word with myself after reading was a tough time you’re having 💐

Sorry you're having a tough time too.

Oh gentleshores, I do sympathise with you in your predicament. I'm not medically trained but do try and keep up with medical issues. I have heard it said that medical training and practice these days tends to encourage a piecemeal approach to the human body instead of a systemic one. It sounds to me as if that is what has happened to you. How about consulting an Osteopath? Their training and knowledge of human anatomy is impressive and doctors have been known to admit that the osteopaths are more thoroughly trained than they are themselves as GPs! I myself have greatly benefitted from osteopathy on my back and knees in years past. Obviously this is not available on the NHS but half a dozen or so sessions could well see you right or at least very much improved. Wishing you well in the near future!

gentleshores

Nannyof4mummyof2

Firstly could you request hospital transport for appointment
A random question are you able to get someone to rearrange things to downstairs for sleeping as a temporary measure get a commode or female urine bottle
Maybe request a good pain killers or injections
Do a social services referral for yourself to have a referral for an OT to visit they can speak to your to your GP to move things forward
Make a complaint to the medical body about becoming immobile because of lack of referrals
An OT maybe be able to get info for you or do a request for a stairlift dependant on your financial situation
You could speak to a chiropractor to come and see you at home and get an assessment for you at a cost
Finally I've had similar problems to yourself and have been taking a magnesium complex and have noticed a marked improvement in my pain and mobility levels
As a previous OT for social services it is sad that today it's he who shouts loudest gets heard but keep on fighting as you have and made progress wishing you luck xx

I suppose I'm a bit nervous about complaining to the surgery in case I get treated worse! I already have a stairlift. Normally I can use it to go downstairs and sit in a chair but at the moment can't walk as far as the stairlift due to the foot. I could use a moonboot if it was just one foot but already use one for the other foot (long standing old injury there) so it wouldn;t be safe to walk with two on - very unstable. Just need to keep off it really for a while. I have to be careful about taking supplements due to being on blood thinners. Some can interact. I self referred to podiatry last year about my left foot hoping they could make some kind of special shoe - never even got a response!

I can assure you you won’t be treated worse. When I worked for a local practice I always told patients that if they weren’t happy with the treatment from one doctor to ask for a second opinion. Because the staff and the other doctors know that some doctors are better than others for some illnesses. You could also ask to see whichever doctor specialises in your particular problems, because they all specialise in different areas and go on refresher courses.

SingingRabbits

Oh gentleshores, I do sympathise with you in your predicament. I'm not medically trained but do try and keep up with medical issues. I have heard it said that medical training and practice these days tends to encourage a piecemeal approach to the human body instead of a systemic one. It sounds to me as if that is what has happened to you. How about consulting an Osteopath? Their training and knowledge of human anatomy is impressive and doctors have been known to admit that the osteopaths are more thoroughly trained than they are themselves as GPs! I myself have greatly benefitted from osteopathy on my back and knees in years past. Obviously this is not available on the NHS but half a dozen or so sessions could well see you right or at least very much improved. Wishing you well in the near future!

The thing I find frustrating is, the only real solution for knee cartilage tears, that impact your ability to walk or do steps - is a repair. There's virtually no blood supply in cartilage so it doesn't heal on its own. It needs someone to look at the MRI scans and determine what type of tear it is and where as some are repairable and some aren't, If they're not repairable it means removing some of the cartilage (but not all of it - they don't do that these days). The argument is that surgery to repair or remove cartilage, causes or worsens arthritis. So they don't want to do the surgery on anyone (seemingly) over 60!

But I researched this myself and it's wrong. It is only a risk to cause arthritis if the arthroscopy is done for arthritis rather than cartilage, - ie if you already have arthritis. My scans and x rays have consistently said "no arthritis". Although the physio now says my latest x ray does show some arthritis. So it looks like they won't even consider me for surgery, Both physios "wrote me off" as "it's degenerative". I keep telling them it was caused by injury originally. But at least having someone look at the scans would be a start to decide whether they're repairable or not.

The newer option is stem cell injections, which are a much lesser surgery and regrow/repair the cartilage using your own stem cells. However, I need to be better "conditioned" for any procedure really. I am still doing some of the physio exercises but I can't do the standing ones.

So while they might say there's a medical reason for it being about my age, I think it's too quickly and easily dismissed and not looking at individual circumstances.

It's a real long shot to get the stem cell treatment, even if I can get a referral from orthopaedics now. One thing that was explained was you have a lot less stem cells to harvest when you get older.

Oh I feel so sorry for you! Your treatment has been downright shabby, and I have a very poor opinion of your GP. (Sorry - I must admit I haven’t read all posts because I just wanted to sympathise). DD lives in your vicitand suffered for six years because her GP refused referrals. She desperately needed a hysterectomy, and when eventually she saw a consultant he hit the roof and practically wheeled her in immediately. I feel that there should be an ombudsman to whom you can turn, but OMG you have been treated appallingly, so I’d also suggest trying the papers. If the government wants GOs to keep us out of hospitals then yours might be the kind of case the press would be keen to highlight. Wishing you the very best.

I am so sad to read your post , being confined to your bedroom is devastating ! I have no advice, other people on GN have more experience that me in situations like this . There has been some sound advice which I sincerely hope will enable you to improve the quality of your life. It would seem you are being treated very badly indeed ! I hope contacting GN has gone some way to helping you alleviate your situation and hopefully give you some comfort - people on GN are amazing. I wish you good luck and I wish you well. Do keep posting. 💐💐

Hi GS
I really feel for you as I’ve had to watch a family member suffer from cartilage problems quite recently. Happily, they’ve now had both replaced (late 60s) and living a full life. They didn’t have arthritis and were not as incapacitated as you seem to be.
It does seem that different regions have different rules. Whilst the GP appears to be unhelpful, they may just be following protocol, implemented by those in a higher position to themselves because of a lack of money and funding.

A google search for treatment of torn cartilages gave up this link to the nhs site. Take a look as there are several points on treatment that contradict what you have been told.

www.nhs.uk/conditions/meniscus-tear/

You could also contact PALS (patients advice and Liaison Service) if you wish to pursue it. Here’s a link to more info.

www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

Firstly though, I’d be asking the GP to explain why they are saying surgery is not an option and then presenting them with the NHS website info and ask for their comment on that.

If not satisfied, ask for a second opinion. Then if no joy, contact PALS and, as another GNetter said, your MP.

Just be mindful, you could be struck off the GPs list.
Good luck 🤞
PS I apologise if others have suggested any of the above on pages 2-4 🥱

Pearl30

Hi GS
I really feel for you as I’ve had to watch a family member suffer from cartilage problems quite recently. Happily, they’ve now had both replaced (late 60s) and living a full life. They didn’t have arthritis and were not as incapacitated as you seem to be.
It does seem that different regions have different rules. Whilst the GP appears to be unhelpful, they may just be following protocol, implemented by those in a higher position to themselves because of a lack of money and funding.

A google search for treatment of torn cartilages gave up this link to the nhs site. Take a look as there are several points on treatment that contradict what you have been told.

www.nhs.uk/conditions/meniscus-tear/

You could also contact PALS (patients advice and Liaison Service) if you wish to pursue it. Here’s a link to more info.

www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

Firstly though, I’d be asking the GP to explain why they are saying surgery is not an option and then presenting them with the NHS website info and ask for their comment on that.

If not satisfied, ask for a second opinion. Then if no joy, contact PALS and, as another GNetter said, your MP.

Just be mindful, you could be struck off the GPs list.
Good luck 🤞
PS I apologise if others have suggested any of the above on pages 2-4 🥱

You mean they've had knee replacements on both knees? For cartilage problems? Or did they have arthritis as well?

Shelflife

I am so sad to read your post , being confined to your bedroom is devastating ! I have no advice, other people on GN have more experience that me in situations like this . There has been some sound advice which I sincerely hope will enable you to improve the quality of your life. It would seem you are being treated very badly indeed ! I hope contacting GN has gone some way to helping you alleviate your situation and hopefully give you some comfort - people on GN are amazing. I wish you good luck and I wish you well. Do keep posting. 💐💐

Thank you . I do feel a bit better for just talking about (but still a bit trapped!).

I think I need to focus on the fact I now have an appointment with an orthopaedic consultant on the NHS (after 3.5 years of trying) at the end of the month, and hope it's someone who listens.

Have you thought about seeing a different doctor, maybe a younger one. I have been trying for over e0 years to get a diagnosis of rheumatoid arthritis but blood tests never proved 100%. We’ll guess what October I came down with terrible pain in all my joints, tendons and weak muscles. I couldn’t dress myself, turn over in bed or lift the duvet. At one point my husband had to carry me to the loo. Ended up in A&E where Sjorgrens (not sure of spelling) inflammatory arthritis was confirmed. It’s the same as RA but shows up slightly different. So at last I am getting the treatment and help I needed. So please just keep on, ask for second opinions. Good luck

Would you consider a couple of appointments with a therapist perhaps?

Gentleshores, have you got someone who can advocate for you when you go to your appointment. I always take my husband because I really feel that I get dismissed as a woman so he steps in for me when he feels that is happening. He does it by asking questions, making suggestions and generally putting them on a spot but in the nicest way. It has made a complete difference to my treatment.
It isn't just the mature lady that gets gaslit either. It has been noticeable that my youngsters are treated with disdain and they seem to need support too. Studies show that Consultants are quite biased (often subconsciously) to certain patients. They can be swayed by whether you work, whether they think you are after benefits, by negativity, the way you dress, gender, size etc. It really is quite disappointing to wait so long for an appointment and then to come away thinking that you have just wasted your time.

Unfortunately I’ve had and got a lot of bone and health problems which I won’t go into but having had 2 meniscus tears and cartilage problems before having 2 knee replacements in the past 18 months the suggestions I have might help as I’ve been in your position with numerous health problems and not knowing where to turn. Either change Gp’s or try to see another in your practice but SHOUT LOUD not rude but loud and saying you cannot put up with this no help any longer. Personally I’d write a letter to the Practice Manager brief but to the point that you don’t feel your problems are being taken seriously and you want to be given a second opinion in the nearest private hospital on the NHS to see an Orthopaedic Consultant. You are entitled to do this and entitled to a second opinion. I obviously don’t know you or your health but I find it hard to believe that you haven’t got a tiny amount of arthritis even though it may not be this that is causing your problems but an orthopaedic specialist will be able to arrange Steroid injection in your knees and foot (I’ve had several) and at the very least they might give you a bit of pain relief. Also I bought a knee brace on Amazon before my knee replacement which helped a bit. The second thing I suggest is to do a self referral for a needs assessment to Adult Sociol Services who can not only help you with equipment but carers and possibly back you up with your GP. Good luck and shout loud, your too young to be in this position and not be out living your life. Make the practice manager, GP & Physio plus any consultant aware LOUDLY that you feel your not being listened too and your health problems are beginning to make you very very depressed. Good luck 🤞

Bluedaisy

Unfortunately I’ve had and got a lot of bone and health problems which I won’t go into but having had 2 meniscus tears and cartilage problems before having 2 knee replacements in the past 18 months the suggestions I have might help as I’ve been in your position with numerous health problems and not knowing where to turn. Either change Gp’s or try to see another in your practice but SHOUT LOUD not rude but loud and saying you cannot put up with this no help any longer. Personally I’d write a letter to the Practice Manager brief but to the point that you don’t feel your problems are being taken seriously and you want to be given a second opinion in the nearest private hospital on the NHS to see an Orthopaedic Consultant. You are entitled to do this and entitled to a second opinion. I obviously don’t know you or your health but I find it hard to believe that you haven’t got a tiny amount of arthritis even though it may not be this that is causing your problems but an orthopaedic specialist will be able to arrange Steroid injection in your knees and foot (I’ve had several) and at the very least they might give you a bit of pain relief. Also I bought a knee brace on Amazon before my knee replacement which helped a bit. The second thing I suggest is to do a self referral for a needs assessment to Adult Sociol Services who can not only help you with equipment but carers and possibly back you up with your GP. Good luck and shout loud, your too young to be in this position and not be out living your life. Make the practice manager, GP & Physio plus any consultant aware LOUDLY that you feel your not being listened too and your health problems are beginning to make you very very depressed. Good luck 🤞

Thank you so much. So did you get knee replacements because of cartilage problems, or was it for arthritis? I probably do have a teeny bit as apparently everyone has if x-rayed. Sometimes the x rays come back as no arthritis. Sometimes just a little bit, on an MRI scan.

Hi, sorry I missed out a word. Yes, both knees were replaced because of cartilage problems. They had no arthritis. Over the years they had several operations to flush out floating bits of cartilage which gave short term relief (a few years). Then finally both knees were replaced (not at the same time).

I know at least three other people who have had knee replacements done, only one had arthritis alongside cartilage problems.
All are living good healthy lives and participating in sports.

You poor bunny, that sounds grim but I am sure there will be an answer. have you been to a chiropractor or osteopath? I believe there have been studies showing physio can often do more harm than good after the first couple of appointments. After my husband's knee surgery the surgeon picked up the page of instructions the physio had left, screwed it up into a ball, threw it into the bin and said 'Walk'. My husband did, and made a brilliant recovery. Make a real nuisance of yourself. You need to be helped and my sense is, with the right treatment you will be. Good luck!

Gentleshores, I'm so sorry to hear how you've been so unsupported. In future people will probably not be able to retire until they're 70 and, presumably, will have to keep working, which will require rather better healthcare! You are too young to go on the scrapheap!
For me it's just one ankle making it hard to walk, 10 months of pain and hardly any proper exercise and I feel the rest of me is wearing down as a result. I've gone through a very similar conflict with the physiotherapist - whatever I do is wrong, either I did too much of the exercises or too little, always my fault and never that the exercises were unsuitable. I won't be going back, I'll have to find the money to pay. Like you I find there's no consistency with the GPs, different one every time with no meaningful follow up, although so far they have at least referred me when I push. It's not just MSK though, I find the same with other specialities although I won't bore you with it all and I'm not suffering nearly as much as you are. I think much of the NHS has been worn down over the last few years and isn't functioning properly anymore. It's a real lottery, I went to a&e when I was on holiday last summer and not only did I get fully examined but I was offered surgery and follow up and then further treatment for an eye problem. If I'd gone to my GP surgery they would still be dragging their feet. I can only hope this postcode lottery will change for the better.

Pearl30

Hi, sorry I missed out a word. Yes, both knees were replaced because of cartilage problems. They had no arthritis. Over the years they had several operations to flush out floating bits of cartilage which gave short term relief (a few years). Then finally both knees were replaced (not at the same time).

I know at least three other people who have had knee replacements done, only one had arthritis alongside cartilage problems.
All are living good healthy lives and participating in sports.

You see that to me, is logical. If you can't walk because of a knee problem, then regardless of whether it's cartilage or arthritis, you need new knees! But I have been told categorically they will only do knee replacements for arthritis. I'd love to know what area you're in and who did your knee replacements! If you could message me please :-)

Sympathies 🌺

gentleshores

Pearl30

Hi, sorry I missed out a word. Yes, both knees were replaced because of cartilage problems. They had no arthritis. Over the years they had several operations to flush out floating bits of cartilage which gave short term relief (a few years). Then finally both knees were replaced (not at the same time).

I know at least three other people who have had knee replacements done, only one had arthritis alongside cartilage problems.
All are living good healthy lives and participating in sports.

You see that to me, is logical. If you can't walk because of a knee problem, then regardless of whether it's cartilage or arthritis, you need new knees! But I have been told categorically they will only do knee replacements for arthritis. I'd love to know what area you're in and who did your knee replacements! If you could message me please :-)

I can tell you , my neighbour in her 50's has just had a knee replacement. How ridiculous that you should be treated like this!

Gentleshores, very sorry you are having all these awful problems. Can you change GP practice? Perhaps a new set of eyes would help you.

A friend is a retired medical doctor, and said that the GP’s work to an ‘algorithm’ for some medical conditions, and when he had a problem with his own hand, he circumvented the algorithm, as he knew that physio wouldn’t work for his problem. He went to a private hand surgeon which was immediately successful.

But not everyone can do that, I fully appreciate. I also wonder if you are somehow stuck halfway along the ‘algorithm’ and the GP needs to rethink and complete the treatment and referral pathway/plan and then refer you appropriately?

I have been undiagnosed with a breathing issue for about 15 years. I finally went to a private consultant (cost about £350.00 for an initial consultation) about something else and he immediately spotted what was wrong and I’ve now got NHS treatment for it. I’m astounded that none of the GP’s were able to see what (in retrospect) was obvious.

Another friend changed GPs when she moved 50 miles away and said that until her move she hadn’t appreciated how unhelpful and frankly ignorant her previous GP’s were. Loyalty (misguided) to them had stopped her changing GP’s in her old area. And since her move, she’s had several problems resolved.

Hope you get the real help you need.

🌷🌷🌷

gentleshores - I am so sorry for you and I agree completely with others who point out the postcode lottery operated by the NHS. If you don't experience this, you never understand how it can happen but it is very much alive. Moving from the centre of London a year ago to the Devon countryside I experienced nothing short of trauma at the variations in provision. Getting a physio appointment in SE London was very long-winded but GPs refer immediately to the hospitals - here in Devon GPs don't 'have the power' to refer directly to orthopaedic departments in hospitals and instead refer to the physio service where one waits two or three months for an appointment and is then required to complete exercises at home, many of which are inappropriate, for well over a year until the physios have exhausted the manual they work from! In the meantime, people are becoming more disabled as they fall prey to repetitive strain injury which prevents normal walking and increases weight - a vicious circle of disability. I do know someone who has had a cartilege donor graft (not in this country). This person was 40 and it was intended to give her 20 years before a knee replacement. She is still recovering from the surgery three months ago and in a great deal of pain but remains hopeful. Good luck.