Podiatry and Physio Advice please

Hi All

A little background first. Male in my 40's I have been under rheumatologist for two years now for a connective tissue disease but no firm diagnosis as it points to scleroderma but I have no skin involvement. Only taking hydroxy and thyroxine . The latest issue to raise its head is quite painful tendons in hips, knees and especially in my feet. My rheumy had my feet ultrasound scanned to see if steroid injections would help but the radiologist said the tendons look fine and as such did not inject steroids. I have also been referred to orthotics but there is over a 6 month wait. The radiologist said the pain is just part of the connective tissue disease and that podiatry/ orthotics wouldn't help.

As this is such a pain, literally, I am willing to pay for a private podiatry/ orthotic referral but don't want to throw money away if the radiologist is right. I would appreciate any advice. In addition I mentioned physio do any off you have physio and find it beneficial ?

Many thanks

12 Replies

  • Have scleroderma and also have pain in my toes...well, like pins and needles and numbness ...soles of feet when walking feel like there are pebbles underfoot...all joints are painful..ankles,shoulders,knees elbows and hips. The pain wakes me up at night when I try to move around to ease pressure on hips and shoulder. My fingers are very painful indeed and I have to get hubby to open jars and bottles ...lifting things is difficult too. I am sure it is all part of the scleroderma so I think you should not waste your money. I don't have much skin involvement as it is my lungs that are affected so my breathing is not too good. Just the palms of my hands have some skin changes with lots of lines which I was told was thickening. I also have Raynauds secondary and have been in hospital with this to improve circulation as my fingers at the tip were splitting open after turning almost black. Good luck with you and hope improvements are coming soon.

  • Oh...forgot to say on the physio query.....no physio after I was told I have fractures in my vertebrae and physio may make me worse...sorry I can't help with that question.

  • Hello there, the answer to your question about physio and podiatry is going to be possibly, but it does depend on what is causing the pain. Your ultrasound scan has obviously shown that there is no inflammation in your tendons, hence them not wanting to give you any steroid. Seeing a podiatrist is often a good thing regardless of whether you have problems or not. We often have developed ways of standing and walking that don't help us and may be the cause of back pain, and joint problems. A podiatrist can do an assessment of your 'gait' to see how you are walking which might help understand a bit more about your pain. In addition if you have pain in your feet regardless of the cause if they provide insoles which cushion you when walking then that might help. If you are going privately I would look for someone who also works with the NHS and has musculoskeletal and ideally rheumatology experience.

    Regarding the physio...do they have a physio linked to your rheumatology department because you really need someone who understands connective tissue disease. Perhaps you could have a word with your Rheumatologist and see if they think it would be helpful...and also given the results of the scan what they think might be the cause of your pain. I really hope that you get some relief from somewhere, and soon. All my best. Lucy

  • Thanks Lucy I didn't realise physios have specialities so will look into that

  • Hi, I see a Rheumatology physio through the NHS as they specialise in our type of problems. I have seen a podiatrist but to be honest found it a waste of time as apart from the gait thing as previously mentioned they don't really help with connective tissue disorders. I have learnt to wear shoes with thick but soft soles and good ankle support. Over the last 12 months I have seen improvement due to treatment and medication but realise that I ain't gonna walk the Pennine way any day soon :)

  • I saw a podiatrist for the pain in my feet which presumably is caused by the scleroderma as I had no problems previously. I have seen various consultants and still don't have a definite diagnosis as to what is causing the pain. The podiatrist prescribed customised insoles which made my feet worse. I persevered for almost 3 months as instructed as I was told it wold take a white to see any improvement, then went back to the podiatrist. I was then diagnosed with Mortons Neuroma, which I was pleased about as there is a cure for it in the form of un ultrasound guided injection. I got my appointment to have it done fairly quickly and was looking forward to be able to walk without pain. However, when the ultrasound was done there was no sign of a neuroma. I had been wrongly diagnosed by the podiatrist which was very disappointing having wasted so much time in my search for a cure. I am now waiting to have a stem cell fat transfer into the soles of my feet so I hope that is going to help. Personally I wouldn't waste money on a podiatrist but I suppose it depends on the cause of the pain.

  • Thanks that has helped me make up my mind

    I hope the stem cell treatment helps you.

  • Hi I am going through the same as you too. Pain is so bad in my feet.

    I am going to get my insoles on Friday from my NHS Podiatrist. Who really I felt di not have a clue what I am going through. I will see if it improves if not they are out. I am in enough pain.

    I hope the stem cell fat transfer works. Let me know. Where are you having it done?

  • Hello Butch54

    I am going exactly through the same as you.

    I have a under active thyroid too, which looks like you are taking the same tablets for. Only taking hydroxy, if this is the quinine tablet, please watch signs for your eyes and the pain going to them too. I now have to see a specialist for my eyes too, because this tablet increased the pressure so bad they had to reduced to one tablet a day.

    I have also been referred to orthotics, who I see again this week for new insoles for my shoes. So I do not know if they will make a difference yet. I am in chronic foot pain along the base of my feet and down the sides. I just wish there were shoes out there to help with the pain. I have tried a few makes and at the moment using Hotter shoes. they do a lovely modern range. So giving them a try at the moment. They are expensive but you try anything when you are in so much pain. A lot is caused by my Raynards in my feet and hands.

    I have badly swollen and painful hands. I find my hands is helped a great deal by paraffin wax baths.

    You mentioned physio do any of you have physio and find it beneficial ? Well I got signed off last week because they could do no more for me but listen. I try and walk everyday and do the best I can. Trying to lose weight as well to try and help my painful joints. which in the cold weather seem to be aching badly too. The trouble with this illness I have systemic scleroderma you live with that much pain day in and day out. You just have to get used to it. Carry on taking the pain killers and do the best you can.

    I would not wish this illness on my worst enemy. People just have not a clue what it is like for us suffers, unless they have it.

  • I am having the fat transfer at the Royal Free in London. It is a long way for me to go but will be worth it if it works. I too have tried lots of different shoe brands. I didn't find hotter comfortable so it just shows we are all different. Of all the ones I have tried the best I have found is Sketchers go walk. I went to get another pair recently and guess what, they have brought out a supposedly better version, go walk 2. They are not as comfortable as the ones I have. Why don't they leave thing alone. In winter I wear Uggs. They keep my feet warm as well as being comfortable and not too bad looking. If my fat transfer works the first thing I am going to do is buy a pair of nice shoes. I am absolutely sick of wearing flats. I know there are worse thing in life but it would be good to be fashionable gain. I am not ready for granny shoes yet even though I am a granny with 5 beautiful grandsons and another due in February.

  • Hi butch54

    I have scleodrama unfortunately over time my feet have become very painful sometimes so bad it's unbearable to walk on but I've been told there is not much else they can do for me just keep on with the medication I'm on and take pain killers and rest to easy it wouldn't bother with physio or waste your money on a private appointment unfortunately this where you are in the stage of the disease just try and stay positive and solider on there are a lot of people worse off than ourselves so I think I'm still lucky to be walking around even if it's not in my heels any more take care😃

  • Thanks MissNash. I agree a lot of people worse off just wish it wasn't so annoying. I have asked the rheumatologist for a review of medication as there appears to be no other physical reason for the pain so see what she says .

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