Painful feet

[sillybilly]

Hi I have PBC/AIH crossover, I have been on steriods for nearly 2 years ,and have been reducing my dose for a couple of months . I have been of them now for 12weeks. Just wondered if anyone has experienced painful feet . I have a very painful left heel , and when I get up to walk it's like my feet lock ,and I can't walk propeley . My Doctor says it's policemans heel ,and I have been signed of work ,resting, doing exercise with my feet but they don't seem to be getting any better . Any ideas

[mumofthree]

I too suffer with painful feet, toes and ankles. As well as PBC I have been diagnosed with osteoporosis and osteoarthritis of the elbows, shoulders, hands, hips, knees and feet. They ache continually, hot and feel like lead weights. I can't stand or walk for long periods of time because it feels as if they are burning and as if I am walking on pebbles. I find it a real problem to find comfortable shoes because they have to be free from any seams, labels, indentations or markings on the soles as everything seems magnified and dig into my feet adding to the pain. I cannot grip with my toes so am unable to wear fashionable flip flops or sandals because they fall off my feet or I walk out of them. I have to make sure they have straps at the back and across the top or at least a strap high up on the foot.... trendy!!.

[GrittyReads in reply to mumofthree]

Hi Mumofthree,

I hope you don't mind me asking, but is there any chance the joint pains are linked to the peri/menopause? I don't mean to insult you, if you are much too young, but I'm really quite curious about PBC and the fact that it occurs mostly in menopausal women - as do many of the autoimmune condtions.

I just do not understand why there is not much more of a closer study, of the links to hormone changes in women and the onset of PBC.

I'm also interested as I developed some joint aches with the approach of menopause, but it all went away when I had a mirena coil fitted. This needs to be removed soon, and I'm worried that they won't replace it if I'm post-menopausal, but that the pains will then come back.

[Although there's a post over on the 'Endometriosis Site' on HU, that says that the progesterone in the Mirena is bad if you are hypermobile).

As with Sillybilly, I really recommend a good podiatrist and/or physio - but I mean really good!! Very sound Pilates classes can help too (but not many such as the 'mass group' ones in gyms, where the instructors can't even see what you are doing or if you are liable to hurt yourself). The best teachers/c;lasses state their qualifications, won't teach more than about 10-12 in a class, and will insist on some one-to-one sessions first. It can cost at first, but next to the mirena (and gym/hiking) Pilates is one of the best things I've ever done.

Nb Apologies if I'm telling you what you already know, or stuff that isn't appropriate. I just want to share a couple of small things that changed my life.

[mumofthree in reply to GrittyReads]

Hi GrittyReads

Thanks for taking the time to respond. I'm not insulted at all. I too think the onset of PBC is linked in some way to hormonal changes, with me personally anyway.

Any advice or experiences you share are never a waste, if it only helps one it has been well worth it.

I was 38 when I first experienced the extreme pains in my hands, arms, feet and legs, and it was 10 weeks after I gave birth to my last child. My GP referred me to a rheumatologist querying viral arthritis and rheumatoid arthritis as that ran in my family. It took 3 years before I actually got to see the rheumatologist. Prior to that I basically learned to cope keeping the pain at bay by self medicating pain relief. My 15 minute consultation was a complete waste of time....he told me I did not have arthritis. I asked why I was experiencing these pains but he could not give me an answer but suggested I should try and lose some weight...I was 5ft 6 ins and about 11 stone so hardly obese, 3 years previously when the problem started I was only 9 stone. I lost all faith in the medical profession after that so went back to self medicating to cope with the pain.

In March 2009 at age 49 I had a period that would not stop, investigations resulted in me having a total hysterectomy in the June. Before that I had not had any problems, regular periods etc. etc. and no signs of the menopause. I am now 54 and have never had any symptoms of the menopause even though my gynaecologist warned that following the hysterectomy it was likely they would come with a vengeance. In August 2009, 2 months after the hysterectomy, my joint, bone and muscle pains became so unbearable I had no option but to go to my GP. I was once again referred to a rheumatologist. By the beginning of Dec 2009 I had been seen by the rheumatologist had numerous blood tests, X-ray's, CT scan and an MRI. I was due to go back for results in Jan 2010...that never happened.

In June 2010 I received a letter from the gastroenterology department confirming my referral to them. I thought there had been a mistake but they confirmed I had been referred to them by the rheumatology department as a result of a query on blood results that they had carried out.

My gastro consultation happened in November 2010 when I was told the blood results indicated that I had PBC but I needed to have a liver biopsy to confirm extent of damage. PBC was finally diagnosed in Jan 2011. Rheumatology diagnosed osteoarthritis and osteoporosis in March 2011.

I have seen a podiatrist who provided me with realignment insoles for my shoes but unfortunately did not have any aides or advise to help to alleviate the pain in my toes or under the feet. So back to the drawing board. I am not sure if there would be anything a physio could do for me.

I have recently tried soaking my feet in Epsom salts which I had heard can help with pain relief....the jury is still out on that one....but worth a try!

Take care

xx

[GrittyReads in reply to mumofthree]

Hi,

No, definitely, absolutely not obese!! I'm about that ... well 2 inches shorter and a few pounds lighter: I think of myself as skinny!

It sounds like you've had a pretty bad time of it with the medical profession - 3 years to see the rheumatologist!? Wow, you have my sympathies. Your experiences make me realise I've been very lucky - with only the 'wrong foot op' chap, and then the liver person who gave me a PBC diagnosis that no one recognises - as my main black spots along the way.

I'm curious though. When you had the hysterectomy, didn't they give you, or at least offer, HRT? Plus, you say you had no symptoms of the menopause ... but the pains started 2 months after. It's known that osteoarthritis and osteoporosis in women are directly related to oestrogen drop at the menopause.

A close friend had a total hysterectomy at about 48, due to terrible fibroids, and she was quickly given HRT. Over 15 years later and she's only recently been taken off it, as a result of blood pressure issues. Only a few months after the HRT stopped totally - she had a gradual, slow reduction - she began to have terrible pains in her hips and knees. So much so that she has became a 'born-again' pilates zealot, having previously poo-poohed my enthusiasm: she says it's made a world of difference.

Finally ... sorry, I feel like I'm lecturing, don't mean to, but do want to help; I just seem to have either been there and turned it around myself [not everything though, I'm still stumbling/procrastinating over 3 diagnoses that I'm not happy with], or seen friends who have done it. So, finally: a really good physio would be able to comprehensively assess your total posture and gait, and tell if unresolved problems in the feet - or wherever - are causing 'knock-on' problems in the higher joints. They may also be able to suggest exercise to correct some of the problems if problems in certain places are causing misalignment elsewhere.

Where do you live? I'm in Devon, and frankly, I don't think there's a really good physio within 2 hours of me. I would go to one I know in London if it was serious. However, there is a brilliant podiatrist in Exeter, who I'm planning to see, once I've dealt with two other issues ...

Hope this helps, sorry for going on.

Meanwhile, take care and spoil yourself!!

[mumofthree in reply to GrittyReads]

Hi Again GrittyReads

Thanks for your reply and advise. I live in Wales by the way.

Physio may well be an answer because being a proper tomboy growing up I have knocked myself about a bit, falling off trees, rope swings, landing on concrete, you name it I was always in the thick of it. Most of the time I can cut myself off from the pain which I have learned over time to do. But unfortunately the coping tactics have been unsuccessful when it comes to my feet.

I have suffered with back problems since the age of 9 when I fell off a space hopper, landed on my bottom on concrete and damaged my coccyx. The main problems with pain started after I had my youngest child in 1999. In 2003/4 I was told I had degeneration of my spine which showed up on an x-ray after I fell down the stairs from top to bottom. So between 1999 and having the hysterectomy (huge fibroids on both ovaries) in 2009 I suffered with back, joint and bone pain but had simply learned to live with it.

In 2011 the rheumatologist diagnosed osteoporosis and osteoarthritis. When he said I had osteoporosis of the spine, I just happened to mention I was told in 2003/4 that I also had degeneration of the spine, he said well that's just another name for osteoporosis.

I was put on HRT patches straight after having my hysterectomy 2009. I was still in hospital when I used the first patch and almost immediately started having side effects. It started with a rash on the site of the patches and over the next few weeks I started experiencing chronic headaches, blurred vision and generally became quite unwell. On the advice of my GP and later agreed to by my gynaecologist I was advised to stop using them. The gynaecologist said that HRT did not agree with everyone and that unfortunately was the case with me. Therefore as the side effects I had experienced were quite serious and because I had not started the menopause (as far as I know now) before having the hysterectomy she advised I stay off the HRT until such time that menopause set in or becomes problematic. She did advise me however to take calcium supplements (which I have done) to prevent onset of osteoporosis.

I did not realise the link to the menopause until now when you pointed it out. So now I am confused.....I do not know if I have gone through, are going through, yet to go through, will ever go through.... I just do not know.... all I can say is.... I have not experienced the most common signs of 'the change' known to me i.e. irregular periods, hot flushes and night sweats.

It makes me wonder if the degeneration/osteoporosis back in 2003/4 could have been a sign I was going through menopause. If so, I could have been taking calcium supplements 6 years earlier. It makes me feel quite angry because obviously the Dr's would have known there was this possible link and should have arranged for further tests to be carried out..... If that had happened maybe I would not have gone on to develop osteoarthritis and I therefore may have been a different person today.....

I also wonder if the intensity of the joint and bone pain and the new excruciating burning sensation in my muscles that I experienced some 2 months after my hysterectomy could have been as a result of my bodies withdrawal of the HRT... OR ... was that the menopause.... my gynaecologist had previously warned me that the menopause may come with a vengeance after the hysterectomy!

I cannot be sure for definite why I was struck these blows firstly in 1999 then 2009, but it seems too much of a coincidence that both major events took place at a time when my body was under going big hormonal changes...the finale being the diagnosis of PBC in 2011.

Apologies for the essay and being a moaning minny its the lack of sleep...but that's another story!!!!

Take care xx

[GrittyReads in reply to mumofthree]

Gosh, you have certainly been through the wringer! And you are not a moaning minny! Double, double, treat yourself, and take care.

I'm not an expert, and some of what I'm saying is opinion based my experiences and friends, but I do agree about the calcium back then; and what about glucosamine??? Also, I don't really know what constitutes 'menopause' after a hysterectomy, especially a total one. My friend's was ovaries and everything, but she had the HRT before she noticed any effects. She did think she had some hot flush effects when the oestrogen patches were reduced/stopped. However, other friends have sailed through menopause without noticing anything.

Do you have bone density scans? Also, it may be worth asking your GP to have all vits and mins tested, and to see a specialist if anything is out of kilter - especially as I think PBC can effect the levels of some of the fat soluble ones. I've also learned from the 'thyroid site' on HU, that it's a juggling act: too much of one vit or min can effect another, and if you are supplementing one thing you often need to take something else to aid absorption, so it can take a nutritionist - whoever - to orchestrate it all.

A good physio might be worth trying - but a good, old school one - trained at Addenbrookes decades ago, or something ...

As for lack of sleep. I had terrible problems when my menopause started: hot flushes from hell stopped all sleep. Eventually my GP suggested Amitriptyline. I had 10mg tablets, but she told me to break them or crush them and take whatever smallest dose worked best - when I had bad bouts of flushes I had about 1/3 of a tablet a night. It was originally marketed as an antidepressant, but in massively higher doses, Now it's used mainly for insomnia, migraine and fibromyalgia: it's non-addictive and these doses are tiny. May not suit, but it sure helped me.

Take care xx

[GrittyReads]

I realise it may cost ... but if you can check among people you really, really trust, try to see if you have a wonderful expert podiatrist in your area, there may be a good NHS one you could ask to see.

I say this with trepidation, as the first person calling himself a podiatrist that I ever visited was a glorified corn-shaver - I knew far more about my foot problems than he did. Likewise consultants, the first one I saw wanted to carry out the bog-standard operation ... but it turned out to be utterly wrong for my feet; my osteopath warned me off and told me the best person to see - who was NHS and wonderful. So do be careful. As with really, really, good physiotherapists, excellent podiatrists are few and far between, and worth their weight in gold.

Never heard of 'Policeman's heel' ask your GP what the proper name is, you'd need to know the correct terminology for another medic, or for travel insurance etc.

I hope you get sorted soon, take care.

[Sammie6]

I have just recently been diagnosed with PBC, I have no symtoms so am unaware how long I have had it. It probably is a complete coincidence but about two years ago I developed a painful left heel I was told by a podiatrist that it was plantar fasciitis and to do calf stretching exercises. Eventually the pain got so bad I visited my doctor and he gave me a cortisone injection in the heel, it was like magic the pain disappeared but unfortunately came back after four months. It became very painful especially in the evening. I was lucky enough via work to have private health so I visited a consultant at a bupa clinic, he again diagnosed PF and recommended I bought a stretching board to lengthen my calf muscles which I did. I was then given an ultrascan and another cortisone. It is now eleven months since the last cortisone and touching wood no pain. Hope this helps.

[sillybilly]

Thank you everyone, Sammie6 your story is just the same as mine.with the pain more in the evening , I am waiting for an appointment with a podiatrist , and really hope he is good. I suppose my next step if that does not work is injections , I haven't found anything that helps with the pain. I have been doing stretching exercises , what is this stretching board , I am willing to give anything a go. So Gald yours is better .

[Sammie6]

Hi silly billy yours does sound very much like mine. If you go onto amazon and search stretchboard a grey and blue slantboard comes up and that is it. It really does stretch your calf well but i suspect that it was the cortisone injections that really improved my heel. They are so worth the little pain while having one. The pain virtually disappeared immediately and i was getting quite distressed mine was so bad every evening. I would go via your doctor and insist on an ultrasound of your heel as they were able to see the plantar fascia damage with that. They then use the ultrasound to give the cortisone in the right place. Please contact me if you need any further information and good luck.

[sillybilly in reply to Sammie6]

Thank you sammie6 , I will try the stretch board thing on amazon . Willing to give anything ago xx thank you