More searching for answers, changes. Acceptance?

Claudette

Since my diagnosis of midfoot arthritis 2 years ago after an inversion injury 2 and a half years ago and 3 physiotherapists later where I have struggled to understand the weakness and numbness in up to half of my foot which results later in pain with any weight bearing, I recently was told by an NHS orthotist that I had equinus feet, feet which were therefore walking too much on my toes. Since most of the problems have been numbness and pain in the metatarsal and toe areas this made sense.I never experience aching in this foot, only ever nerve pains but weakness and numbness is the most disturbing sensation. He told me to do calf stretches but any changes might take up to 9 months to make a difference. I have been doing these for about 7 weeks now, twice a day. This has changed things somewhat. The numbness/ weakness is now spread over a larger area from toes to ankle but with the right shoes I now feel my foot is more evenly distributed. This last detail feels more positive in terms of the joints in the rest of my body. I still do get that nasty nerve pain in the back but I am hoping it is the change which is making it.

As my numbness and weakness is still the most disturbing thing over a large area of my foot I decided to try Clinical Pilates in my gym but went for a free discussion with the physio in charge who runs it. She told me she had had the same kind of injury to her foot 18 months ago but, being a physio, and even though it was possible for her to hobble on it, she took it seriously and found that she had a Lisfranc, a very serious injury which she said is often missed by consultants and which can mean ligaments or joints at midfoot or both. She actually asked me if I was experiencing numbness before I even said it. She has urged me to come to her
for no more than 3 sessions for physio, for manipulation and exercises. I asked how any manipulation could help when I've had it so long but she said that combined with the right exercises she felt confident. If I am honest, I am not sure that I do. I ended up blubbing again, saying how this had changed my life quite rapidly and she held both of my hands and urged me to give this ago and that she would give me 110%. I must say she seemed so sincere so I said I would. That's next Thursday. So no Pilates yet.

On the acceptance side of things, I go from day to day with this weakness, numbness which can alternate it's position sometimes and becomes painful with even small amounts of wight bearing. I continue to try to walk for just, say 15 minutes about every couple of days. I 'm struggling, and unhappy that I can no longer get where I want to go. We used to go out for a day out, say visiting a town, looking in shops, walking by a river or canal. I can't do that. My world feels as if it has become "small". If things are to continue like this I was wondering at what point do people consider having a wheelchair to hand? It is certainly not something I have wanted to do but if things must stay like this I am unhappy with my small world. Do fold up wheelchairs still enable you to push the wheels yourself? I'm already doing strength training on my upper body in the gym. Is the back support on a fold up wheelchair useless? Sitting badly sets off the nerve pain in my back.The only thing pre foot injury which helped was a long walk.Crutches seem to make my back worse. I'm not sure about the stick. Do you have any ideas?
Sorry for the essay once again.Thank you if you held out to read it.

Airwave!

Acceptance is, I find, an everchanging and ongoing format, your mind will play games with you, you may feel better and then your hopes will be dashed by what you can't do, bearwith!

On a more practical note a fold up/dismantable electric scooter might serve your needs in the short term and at least allow you some fresh air?

stickywicket

A good point from Airwave

I can't help as my wheelchair is one that has to be pushed as my hands / arms etc are as bad as my legs / feet but there is a huge variety on the market so you could have a bit of fun with some online researching to see what would best suit you. I would advise buying from a 'proper' shop though, in the end as you'll then be able to sit in it or on it and have a go..

Claudette

Thanks Airwave and Sticky,
This sounds like good advice which I can look into.

daffy2

Good to hear from you again Claudette although I'm sorry that you are still struggling.
As to the manipulation suggested by the physio I think you are lucky to have the chance to work with someone knowledgeable who understands what you are facing. Don't underestimate the effect things like muscles can have on our other conditions, and the extent to which pain and discomfort can be the result of soft tissues trying to adapt and cope with skeletal bits being out of kilter, especially if it's been going on for any length of time. The majority of the back pain that my scoliosis causes is muscular, and now that OA and fibro have suddenly appeared in the mix I am more than ever aware that the pain(and also joint malfunction such as an ankle suddenly not supporting me) I experience is largely muscle related. Doesn't make it any easier to bear necessarily, but at last I have a reasonable idea of what's what when trying to deal with it.
How is your husband doing - he was not having a good time of things when you last posted.

Claudette

Daffy, thank you. I read your email at just the right time and you made me feel less alone with my problem. I got up this morning and noticed the stiffness in my foot. Of late, say in the last week or so, I have been having alternate day symptoms, or roughly that. Things are clearly out of balance and struggling to find that place. So today it was the stiff foot over the arch, makes me feel I'm walking on a slant. Pain was minimal so I was grateful for that. The slant feeling makes me want to put flat shoes no arch support in....not the advice given but the urge to do this is strong. Then, to go out of the house I put the shoes with the support in on. Immediately then started with the nerve problem I get in my lower back. This isn't sciatica as far as I know although I do get symptoms in the leg.The pain is a very highly irritating pain which affects my bladder and sometimes bowel, not making me go...just making me feel I want to but with no outcome! This lower back thing has haunted me for 20 years but there have been episodes of time when it has left me. A recent MRI said I do have degeneration there. Of late I get this every other day. It is worse to deal with than the foot, can't think straight when I've got it but it will usually subside by the following morning. Then, of late I wake the next day with a really weak foot on the outer side of my foot. Feel like I'm going mad. I do hope this physio can help me...but I feel so complicated with my back being so involved as well. Walking a little sometimes helps although today the foot doesn't seem to want to lose the stiffness.
My husband has been signed off work for 5 weeks now with the depression and has been taking the meds. He says he doesn't feel that much better. I love having him around...a bitter sweet experience with him not feeling good too...and guess what - today was our 25th anniversary. It was lovely to spend it with him. I do love him to bits...just wish I could be more, be better, be more fun instead of dogged by pain or disability. We had an hours cycle ride + coffee together. I look fit and active whilst on a bike...until I get off. Tomorrow he starts his phased return to work. I shall miss him...although I do want him to feel better.
Got the TENS machine on my lower back. Takes the edge off the nerve pain. Paracetamol or codeine stuff won't really touch it. Oh well...tomorrow is another day.

Airwave!

I shall probably get shot for keep saying, 'wheatbags'', heat reduces pain. Just keep using it again and again.

Claudette

Thanks Airwave. I would never shoot you. Yes...got my list of things for the nerve back pain...but strange how when in it you forget some of them. Thank goodness that has subsided just now. Time to concentrate on physio for foot.

dreamdaisy

Wishing for something to happen doesn't make it happen. DD

dreamdaisy

I've been thinking about why you have stopped doing the things you enjoy. In our situations it is usually harder to do things than not but I prefer to be doing something to distract myself from the pain (which will carry on regardless of whether I am busy or not). Even resting in front of the TV I will be on here trying to help and encourage others or doing a jigsaw, not sitting there bemoaning my woeful state. My pain often appears to be reduced because my mind is focused elsewhere but now, as I think I am beginning to repeat my other replies, I shall shut up. DD

Claudette

You are also providing a useful supportive role for others. Thank you, DD.

dreamdaisy

Those are kind words, Claudette, thank you. I'm fortunate in more ways than not and am fully aware of my blessings. I am also lucky that my essential character tends towards the Tigger rather than the Eeyore, that makes a huge difference.

Life is not easy but then whose is? I could make mine far harder but refuse to do so, I am not my disease, it does not define me and never will. DD