Painful feet

[phayes14]

Hi does anyone with WG have painful feet? Mine are very painful and I have no idea what to do to relieve the pain.

Thank you

[AllyGY2013]

Oh yes! I also have WG/GPA and I have painful feet, ankles and joints in general. Recently my ankles and calves swell and I now wear compresssion stockings but they don't help much with the swelling which my GP says is due to an old back injury and not necessarily the vasculitis.

I get pain in the balls of my feet and across the top joints especially when I walk or move my feet.

I use a beanie that I heat in the microwave and put it on a pillow on the floor or on a foot stool and rest my feet on it - aahhh bliss. Hot baths help too.

I take plaquenil, paracetamol, ranitidine and naprosyn or cerebrex (the latter 2 are anti-inflammatories).

The anti-inflammatories definitely help with the severe joint pain, making it much more bearable at worst and taking it away completely at best. Unfortunately they upset my stomach hence I take ranitidine an hour before I take them and only take them in short bursts so when my symptoms are alleviated I stop taking them and as the symptoms return I take them again.

Sometimes I get a shooting pain in my foot which makes me immediately remove the weight from that foot and so I can lose my balance and fall, so now take a walking stick with me when pain is bad as this gives me security. It was becoming a joke at school when I collected my son - take more water with it! Luckily the other parents know and grab me before I hit the deck.

Finding comfortable shoes is becoming a real problem and I am considering trying gel insoles.

A friend of mine has let me have a list of supplements she takes (she has lupus and shares many of my symptoms) which I will discuss with my doctor and may try as they are definitely working for her, she is meds free and symptom free, eats a very healthy diet and stays away from processed foods and gluten. I eat a varied and healthy diet and stay away from processed foods which definitely helps with my symptoms, I know when I 'cheat' and have a sneaky treat! I am now trying to stay away from gluten but not finding that one easy, but I don't take any supplements as yet.

Hope some of the above helps,

Ally

[valwood in reply to AllyGY2013]

I also suffer from painful feet and find the only way to keep the pain bearable is to ellevate my feet as much as possible. I have a foot stool at the end of my chair and now automatically put my feet up.

[Suzym2u Moderator Vasculitis UK]

John suffers with painful feet, he tries to wear shoes that are light, comfortable and wide fitting. He sleeps with feet on a firm pillow at night. He tries to rest his feet for about an hour in the afternoon. He calls it his horizontality time. If you look through the polls, there is one about painful feet, it makes very interesting reading.

Susan

[Katie18]

Hi I suffer from churg Strauss which causes painful feet due to damage to my nerves. I take amitryptiline at night (an antidepressant which works as pain relief in low doses ) and I used to take pregabalin. I have real problems finding comfortable shoes especially as I have to wear steep inner soles. I come under the mobility team who look after orthotics at the hospital and I'm going to talk to them about made to measure shoes. Reflexology has helped me, so does my partner massaging my feet at night, swimming does - the cool water and I've recently tried accupuncture - many physios do it so your doctor can refer you on the NHS - and that helps too. I also lie on the settee at night with my feet up. Hope you find something that works for you.

[lfu2]

Hi phayes14,

Painful feet... you bet. I have tried all the nerve medication that the consultants and GP prescribed but found that the side effects (for me) were horrible.... so much nausea. I eventually found that 2 tramadol in the morning controlled the pain. It didn't remove it but made it more acceptable... no more that feeling of walking on shells in your bare feet. The other strange thing is that if I walk a fair amount then the foot pain diminishes, but the tramadol helps me to get walking in the first place .... so exercise helps in a round-about way.

Hope this helps.

[HiveMind]

Definitely! I've had painful feet for the past 3 years. The strange thing is sometimes it comes and goes! Recently though, the pain is with me all of the time. It's across the balls of my feet and very painful and debilitating. I've just been diagnosed with gout too! In my ankle of all places! Which is excruciatingly painful and left me unable to walk for four days. 😞 Apparently this is a by-product of my taking diuretics (because of the heart failure brought on by my Churg Strauss Syndrome!)

Oh the joys of Vasculitis!

[PCAD]

I also suffer with very painful feet (as well as other joints, bones and muscles). Can't add much about the feet to what has already been said other than the fact that I have started wearing 2 pairs of socks (one normal pair on top of a pair of thickly cushioned trainer socks). If that's not enough I sometimes add ankle supports as well. Not a miracle cure but does tend to give some relief in my case.

More generally I have terrible trouble with pain at night (as many do) especially pain from lying in one place for an extended period of time so have come up with the following for me:

Thick foam mattress cover

Foam pillow

Amitriplyline around tea time

Codeine and paracetamol for bed (can't take anti inflammatory tablets due to bleeding disorder)

Can't say its perfect by any stretch but it is so much better than it was as I struggled to get any sleep at all after 3/4am.

I guess trying to find something to suit you and your circumstances is what I'm saying. Some times small improvements make a big difference.

[Melon in reply to PCAD]

Hope you don't mind me asking (and I don't mind if you ignore this or decide to private message me) but why don't you move at night? Is it to avoid pain? The reason I ask is that I have stopped moving at night. It doesn't seem to be night paralysis (although I had this once) as I am able to move freely on waking. It was suggested that I do move but am unaware of it and just happen to wake up in the same position however I had a small deformity in the capillaries in my thumb for a while which bled regularly. One night it started to bleed and left a pool of blood where my thumb was. It clearly hadn't moved.

Just wandered whether other people have this 'sleep paralysis'.

[PCAD in reply to Melon]

Hi, no problem, happy to share, as probably not clear enough in my original post.

I don't seem to move much either (well it seems like I don't) so my issue is I wake up with pain everywhere I have been lying. So if I start on my back I would wake up with pain all down my back. I would then move to one side until I woke with pain down my side, hip, knee, feet. Then to the other side until repeated. Without the process outlined in previous post by 4am it was too painful to be in any position and get back to sleep. I know I'm not getting restful sleep (lots of dreaming and awareness of moving) now but at least I feel I'm getting more sleep. I know it's probably the Amitriplyline which is doing this but it gets me through the night. On the odd occasions I don't take it, I still don't get past 4am. To be honest my feet are a bigger issue in the daytime than at night (but I put that down to the fact they are not being stood on at night hence less pressure).

Luckily the Tranexamic Acid controls my bleeding symptoms totally. Before I started I would regularly wake with blood on pillow and not really know where it came from (assumption was nose).

Hope that helps to clarify a little.

[Melon in reply to PCAD]

Thanks for your response. Glad your meds are helping. Wonder what it is re. lack of movement and night and vasculitis?

[hamble99b Volunteer]

I have awful problems with mine too.

I have WG/GPA & Fibromyalgia.

try sketchers go-walk shoes, they are light and comfy and may suit.

[gibson100]

Muscle wastage and neuropathy has probably been the worst legacy of MPA.

I tried a couple of drug treatments which were worse than useless.I found the best route is self -hypnosis and relaxation techniques.I also see a Havening practitioner which is very good.It works to break the nerve patterns that carry pain.Bit alternative but it works.

I also would recommend Sketchers shoes.They are super comfortable with memory foam interiors.I have six pairs in various colour ways and they look fairly sharp.They have a website in the UK with the full range and they deliver.Otherwise Shuh stock them

[IPS70]

My nerves are damaged in my foot and hand due to CSS. I am on a maximum dosage of Pregablin and still sometimes pain is unbearable especially in my foot. I find TENS machine very helpful with providing pain relieve. They are not expensive, I bought mine from Lloyds pharmacy for £20.