Foot pain

[AliceLily]

Does anyone else get foot pain? I think my foot pain could be enthesitis. I get streaky tight pain across the middle of the sole of my foot (getting this one while laying down now). I also am experiencing tender soreness, tightness when I get up to walk after sitting or laying down. I can hardly walk for a while. My seventy year old mother gets up and walks fine without sore feet!

If anyone else here has enthesitis, or sore feet how are you managing it? I wonder if the odd voltaren tablet would help with this sort of thing or maybe there is something more specific that would help better. I'm not asking advice and will discuss with my doctor before trying anything new but just interested in what others may be taking.

The best shoe I have found comfortable and supportive are these winter boots. Mine haven't got this zip in side like this picture but everything else is the same. You can see it has a seam that goes over shoe near the toes and that is how I know it's the right one.

Is foot pain common in ME. I sometimes think this might be comorbidity that I have, perhaps.

 

[MErmaid]

I have worn custom made orthotics for many years, cast by my podiatrist. Prior to orthotics, I had plantar fasciitis, fallen arches, and frequent toe jams.

My experience with ME, is I suffer from lactic acid build up. So I get frequent chair massages, including my feet, which allow me to be pain free for at least a few hours. It feels great to walk with zero pain, even if it’s just temporary! (Feet, legs, hips, lower back, arms, shoulders).

 

[Awol]

Is foot pain common in ME. I sometimes think this might be comorbidity that I have, perhaps.

Hi @Rosie, my experience from online ME support groups is that foot pain is quite common in ME but that possible treatments or management may depend on the cause of the pain, e.g. nerve or muscle or inflammation. As for comorbity, something that affects the feet that I'd not heard of until someone asked about it in an ME group, is Charcot Marie Tooth (CMT), classified as a neurological disorder like ME, but affecting peripheral nerves that supply muscles and is length-dependent, starting with the feet and hands. There are different types of CMT and although it's genetic, symptoms often don't start to show until adulthood, mainly as muscle weakness but can include pain. I'm not suggesting that's what you could have, just using it as an example of another neurological disorder unrelated to ME but with foot symptom overlap.

 

[duncan]

Does anyone else get foot pain?

I did. For years I had pain in the soles of both feet. I went to a podiatrist who diagnosed me with plantar faciitis and gave me inserts. They didn't really help.

Eventually I tested positive for Bartonella. One of the most common symptoms of Bartonella is intense pain in sufferers' feet. I was treated for the Bartonella for a couple of months. The pain in both feet disappeared.

My sister has a history of ticks and also has had many cats. She also has been diagnosed with plantar faciitis, by a different podiatrist in a different state. I recommended she get tested for Bartonella. She scoffed. She's a nurse, and has been for 45 years. The odds of having Bartonella, she says, are astronomical. She refuses to be tested for it.

But it will be she who hobbles around today, and not I.

 

[AliceLily]

I have worn custom made orthotics for many years, cast by my podiatrist. Prior to orthotics, I had plantar fasciitis, fallen arches, and frequent toe jams.

My experience with ME, is I suffer from lactic acid build up. So I get frequent chair massages, including my feet, which allow me to be pain free for at least a few hours. It feels great to walk with zero pain, even if it’s just temporary! (Feet, legs, hips, lower back, arms, shoulders).

@MErmaid I'd be interested in finding out how much lactic acid build up I have. I only need to go for a short run to catch a bus to make my legs feel thick and heavy. Someone gifted me a bike years ago and I thought it would be good to use for going down to the local dairy instead of walking but I found I could hardly walk after getting off the bike because my legs felt like they had grown twice the size.

 

[AliceLily]

Hi @Rosie, my experience from online ME support groups is that foot pain is quite common in ME but that possible treatments or management may depend on the cause of the pain, e.g. nerve or muscle or inflammation. As for comorbity, something that affects the feet that I'd not heard of until someone asked about it in an ME group, is Charcot Marie Tooth (CMT), classified as a neurological disorder like ME, but affecting peripheral nerves that supply muscles and is length-dependent, starting with the feet and hands. There are different types of CMT and although it's genetic, symptoms often don't start to show until adulthood, mainly as muscle weakness but can include pain. I'm not suggesting that's what you could have, just using it as an example of another neurological disorder unrelated to ME but with foot symptom overlap.

Hi @Jo Best Thanks for mentioning.

I am thinking of changing my doctor this year. He has been very good to me but I think he tends to see a lot of my symptoms as being caused by ME and I think other illnesses are being missed.

I'm going to try and see if I can get a new doctor to send me to a rheumatologist and some other specialists. I need to get some clearer answers if I can.

 

[AliceLily]

I did. For years I had pain in the soles of both feet. I went to a podiatrist who diagnosed me with plantar faciitis and gave me inserts. They didn't really help.

Eventually I tested positive for Bartonella. One of the most common symptoms of Bartonella is intense pain in sufferers' feet. I was treated for the Bartonella for a couple of months. The pain in both feet disappeared.

My sister has a history of ticks and also has had many cats. She also has been diagnosed with plantar faciitis, by a different podiatrist in a different state. I recommended she get tested for Bartonella. She scoffed. She's a nurse, and has been for 45 years. The odds of having Bartonella, she says, are astronomical. She refuses to be tested for it.

But it will be she who hobbles around today, and not I.

@duncan I get pain mainly after sitting or laying down for a while and it eases up as I start to walk and warm the feet up I guess. Although there is some tenderness or sore points if walking on a hard surface without good cushioning support.

If you don't mind, what did you end up taking that helped you? I'm glad you found something.

 

[duncan]

what did you end up taking that helped you?

I tested positive for it a couple of times before I ever had a targeted regimen. It was a cocktail that included Rifampin, I think, and at least one other abx (or two?), but I don't recall what they were.

I get pain mainly after sitting or laying down for a while and it eases up as I start to walk and warm the feet up I guess.

That was similar to what I experienced, as I recall. I hated standing after sleep.

I need to get tested again, come to think of it; it's been a while.

I hope you can find a therapy that alleviates the pain.

 

[MErmaid]

@MErmaid I'd be interested in finding out how much lactic acid build up I have. I only need to go for a short run to catch a bus to make my legs feel thick and heavy. Someone gifted me a bike years ago and I thought it would be good to use for going down to the local dairy instead of walking but I found I could hardly walk after getting off the bike because my legs felt like they had grown twice the size.

I know that the lactic acid build up situation with me was getting worse over the years. I don’t have a way to measure it. Yes, I can relate to the situation with your legs. It’s a huge hassle for me to exercise, because I have to get a chair massage right before, and then immediately afterwards. The lactic acid pain starts to creep in about the 45 minute mark.

I have not tried a recumbant bike, but if I could rent one easily, I would. Gravity is not my friend, with ME. I realize it’s just a dream, but I would gladly volunteer to live in the Space Station.

I don’t know if the NIH has access to any equipment that reduces gravity? My hunch is that some of us would much prefer that form of lifestyle.

 

[AliceLily]

I tested positive for it a couple of times before I ever had a targeted regimen. It was a cocktail that included Rifampin, I think, and at least one other abx (or two?), but I don't recall what they were.


That was similar to what I experienced, as I recall. I hated standing after sleep.

I need to get tested again, come to think of it; it's been a while.

I hope you can find a therapy that alleviates the pain.

Thanks @duncan I'm in a tricky situation now regarding antibiotics, which I don't like to think about because it scares me. I have become intolerant to them since menopause. It feels to me like they are now over sterilizing me in a bad way. I never had any problems with antibiotics before this and used to feel better on them but things have now changed.

I think menopause and my ME has created this situation. One of my friends who has ME is going through menopause without any problems so there must be some different pathways for some of us.

I hope things will still remain better for you.

 

[AliceLily]

I know that the lactic acid build up situation with me was getting worse over the years. I don’t have a way to measure it. Yes, I can relate to the situation with your legs. It’s a huge hassle for me to exercise, because I have to get a chair massage right before, and then immediately afterwards. The lactic acid pain starts to creep in about the 45 minute mark.

I have not tried a recumbant bike, but if I could rent one easily, I would. Gravity is not my friend, with ME. I realize it’s just a dream, but I would gladly volunteer to live in the Space Station.

I don’t know if the NIH has access to any equipment that reduces gravity? My hunch is that some of us would much prefer that form of lifestyle.

I haven't had a massage in years. My mother had a guy come to the house to give her a back massage every fortnight for awhile. She was giving herself a treat.

One time he was here I came out from lying down in my room and while I was chatting to him about massage he came up and gave my back a quick massage while I was standing and I nearly melted to the floor it felt so good. At the time I was feeling quite weak and didn't feel strong enough for a back massage. I thought it might stir up my ME.

 

[MErmaid]

I haven't had a massage in years. My mother had a guy come to the house to give her a back massage every fortnight for awhile. She was giving herself a treat.

One time he was here I came out from lying down in my room and while I was chatting to him about massage he came up and gave my back a quick massage while I was standing and I nearly melted to the floor it felt so good. At the time I was feeling quite weak and didn't feel strong enough for a back massage. I thought it might stir up my ME.

I hope he was cute; If so, then I think I’d melt to the floor too

 

[AliceLily]

I hope he was cute; If so, then I think I’d melt to the floor too

He was cute!

 

[Awol]

Hi @Jo Best Thanks for mentioning.

I am thinking of changing my doctor this year. He has been very good to me but I think he tends to see a lot of my symptoms as being caused by ME and I think other illnesses are being missed.

I'm going to try and see if I can get a new doctor to send me to a rheumatologist and some other specialists. I need to get some clearer answers if I can.

Yes, it doesn't help that ME has so many symptoms, easy for doctors to get stuck in that mindset. Best of luck Rosie.