Limited Scleroderma, Autoimmune issues, thymoma, metal implants in joints

[beesmum]

I'm wondering if anyone has limited scleroderma and autoimmune issues, AND have had to have metal implants in any joint due to failed fractures?

In May 2022 I stupidly tripped over my dog, fell heavily flat on my front onto a concrete floor, fractured my left kneecap and left wrist (radius). Both fractures were clean breaks but unfortunately both failed after two weeks necessitating steel wires and pins in my kneecap, and a titanium plate on my radius.

Both fractures healed well over the next couple of months, and I was wearing a brace 24hrs a day for 10wks to help with stability. I was almost walking normally after 10wks, no pain in my knee or wrist, the brace came off and I was looking forward to walking normally and back to a very active life.

Sadly not so, I started having terrible pain and discomfort in my knee, both my wrist and knee felt like they were in a tight vice, I lost mobility and flexibility very quickly, I continued with physio tho had to use caution incase it became too much.

I've had to fight tooth and nail to get help, NHS not interested, I wanted the metal implants removed as I'm certain it's my autoimmune issues treating the metal as a foreign body. I've basically become an invalid in great pain and loss of movement.

Had to pay for surgery to remove the metal implants from both joints, NHS ignored me, my knee has been trashed by the metal implants, terrible pain, I now require a full knee replacement. Wrist limited movement, weak, uncomfortable.

Sorry to rabbit on, medics refuse to believe it's autoimmune causing the issues, or discuss it.

Any info gratefully received. I had a rare cancer several years ago, thymoma, resected July 2016. it may or may not be relevant.

Thank you for reading, well done if you read it all!

[MissusTee]

Hi,

I have scleroderma, PBC, Sjögrens and hypothyroidism. I also have severe osteoarthritis and have had a big toe fusion with plates and screws and I’m likely to have knee replacements. No, I haven’t experienced those sort of problems, although I had my iud removed, as I thought that it wasn’t the best idea.

[ArthurFoot]

I hate to say this but are the NHS speaking to your Scleroderma specialists.... my experience has been that they work in silos, are absolutely specialists in their own fields but there is little, if any, cross functional working. As a patient if you perceive there may be multiple things that need to be taken into consideration at the same time then in my experience you are left feeling ignored, isolated and no further forward .... when it all goes wrong they just seem to want to protect themselves on a personal level rather than looking at it cross functionally to try and find a solution. It is pot luck if you manage to find a doctor who is sympathetic and prepared to go the extra mile to help you and I suspect is more likely if you go private. I hate to sound so cynical but my advice unfortunately is to keep clear records of everything that has happened to you ... any conversations must be confirmed in writing and take screenshots or paper copies of your medical records .... there are no guarantees that your records will not be changed after the event to protect the doctors. Take timed and dated photographs if appropriate. I have had so much contradictory advice that it is important you keep records for your own sanity. I have been gas lighted and made to feel like a total liar about what happened to me .... my integrity is one of my core values! Try to keep your chin up and keep moving forward .... if you can afford it go private! It is such a shame that they do not take the opportunity to cross functionally investigate .... afterall they may all discover something they didn't know before. I hear you load and clear and really hope you find someone who listens and trys to find a solution ... you and the quality of your life do matter. Good luck xx

[RosemerryVenet in reply to ArthurFoot]

I agree 100% about getting the different

[RosemerryVenet in reply to RosemerryVenet]

different doctors conferring. A few years ago I kept fainting, being sick and dizzy and was often admitted to hospital. Nobody knew what was wrong until one gastroenterologist said he thought he should speak to the rheumatologists! Hey Presto! The realised what the problem was are treating it. I'm still not brilliant, but at least they know what they are dealing with!By the way, I have hip replacements and one is fine, but I have had the left one operated on 3 times, and it is playing up again. It never occurred to me it could be connected to the scleroderma. I shall mention it.

I hope you feel better soon. X

[ArthurFoot in reply to RosemerryVenet]

I really had to think twice about sending you my reply as I felt it was a bit negative and I know having scleroderma we all need to feel hopeful as so little is known. However I decided if we all adopt the approach not to speak out then nothing will ever change ... I don't know but is there any possibility that you are reacting to the materials being used in the reconstruction (that you have now had removed)? I just hope you can get various specialists to at least consider some of the possibilities and find a solution soon, or at least are able to make some progress. I really do wish you all the very best xx. Ps no-one believes me that I react to human grade silicone ... I am now just treated like I'm the awkward patient and should be ignored ... you have to laugh otherwise you'd go mad ... maybe that's the plan. I bet in a 100 years they'll find out something that gives the answer!

[stiff19 in reply to ArthurFoot]

amazing, your experience and words mirror me. I feel desperately for you as its mind numbing and its taken me bad health progression and finding my sanity after gaslighting to get to the point of now going to go private . did it help you to go private? im so glad I came across this as its 100 percent fitting.🙏 thankyou for writing it and I think only people who have been through it understand .

[ArthurFoot in reply to stiff19]

I'm still in the thick of it but it is strangely reassuring to know someone has been through it too .... sadly! My GP completely ignored me having presented with a minor infection in my foot. He ignored the consultants letter in my notes saying I should be give two types of antibiotics and only gave me one which didn't work .... although my notes have mysteriously changed and read differently. I developed gangrene which despite it spreading I was not referred...11 weeks later I was an urgent admission to have my toess amputated ... 5 years later and no progress ... I have not been able to work, have continuous pain and a pair if orthotic shoes that are useless and I have a very fragile and unstable ankle and knee. I will have to take my pension early to survive which means I will loose 20% of the value of my pension. My vascular surgeon has told me my toes would have been saved had I been referred earlier. It is immensely frustrating that it could have been avoided had my GP done something... I don't imagine he has any clue of the knock on effects to me on a personal level .... unable to walk very far, unable to work, loss of income, loss of big chunk of my pension. I have no trust at all in the medical profession.

[stiff19 in reply to ArthurFoot]

I am sorry to hear your story it is so frustrating to say the least and as you say the consequences we suffer seem to not count as its not their concern. I too have every reason not to trust the local care I have or not and any experience that leads to this mistrust is just unacceptable from a so called caring profession, of course i cannot generalise as many are lucky and afforded the correct care but for those who aren't the system failures should be addressed and indeed should not be happening in the first place.i send all my understanding and best wishes

[ArthurFoot in reply to stiff19]

Thank you so much, I can't Express strongly enough how even just one person believing me makes me feel stronger to keep going. Do you mind me asking what part of the country you are in? I am now seriously considering moving house to get better care but I don't want to jump out of the frying pan into the fire!

[stiff19 in reply to ArthurFoot]

, I feel the same though I will try to move to another trust area for care even if have to travel as my trust in my local area is totally out of the question I fear for my kids (well not little any more) as well as myself if they need care , which already began the same course with my daughter and I had to complain and im not a complainer but where health is concerned I do expect a standard of care and not willing to risk my health or families.ironically we moved here for better life but healthcare wise it has been the worst decision and I regret it which is very sad , it is not just me either family and friends and acquaintances feel the same about it, but then its getting bad all round by the sounds of things so unless we won the lottery and could afford healthcare privately im not sure what we need to do and it scares the life out of me and to uproot is not an option really either. I know people think im dramatic or a moaner if I mention it so I don't anymore and have been made to feel like im mad or too expecting but its not the case , I am just being honest and speaking openly about it and I know others as yourself have had bad experiences and its only those of us that understand so you are not alone and we have no choice but to accept it and move on but that does not make it acceptable. we know our truth and there's not an abundance of understanding but for someone to understand can make a difference and you must keep going and not let them ruin our lives even more or strip us of our sanity for its that which will help us move forward be it damaged. we do need to speak out and shouldn't feel ashamed and hope it helps change come for others who might also fall foul of it. the truth is sometimes hard for people to hear but that doesn't change the truth and its not to be malicious or cynical but protection for ourselves and others. I admire you for speaking your truth and wish you all the best in moving forward 🙏

[ArthurFoot in reply to stiff19]

Ha! Ha! You sound like my double! I'm lucky as I am under the Royal Free in London and I have NO complaints with them at all ... it is only when i have had dealings with my local area i have problems. I'm in the South WestIronically if I move north I can get to London more quickly and cheaper by train than I can from where I live currently. My mum is very elderly and when she is no longer with us I'm off!

[stiff19 in reply to ArthurFoot]

🤣 yes that’s where I’m going to head for private appointment 👍 oh dear hope it’s not the same local hospital. I am from London and healthcare was better. I am pleased to hear you are being looked after under royal free 🙏yes so much factors in to moving doesn’t it. I only began suffering my health badly in 2018 so hadn’t given health care much thought on moving here but of course the importance is highlighted now and same my first opportunity to move and I would but doesn’t help the now does it. Well I’m glad you have care now, I hope to find some too and good luck when you can move 🙏👍!

[stiff19]

hi I hope you oint mind me asking but my bony part of chest where I believe thymus is , constantly swollen with swollen neck glands to collar bone and troubles breathing and chest pains tightness and arythmias, can I ask how you found your thymoma and symptoms please