[Katharine]

Hi all,

I have hesitated a long time about posting this. Mainly because I'm really not sure that anyone has an answer.

I have tendon problems with my lupus. Usually that means a lot of pain, a lot of weakness, some strapping and get on with it. Unfortunately when you find yourself with the "attachments" of BOTH achilles tendons inflamed, it doesn't work that way, as, well, one does have to walk... :lol:

My main pain problems involve any weight bearing (standing is worse than walking), any hard surface walking, wearing shoes, sleeping at night (the simple touch of heels on mattress is excrutiating). I can get around the last, the others are harder.

So far the rheumy hasn't come up with anything very concrete on this. She gave me stronger anti-inflammatories which nicely reduced inflammation just about everywhere but hardly touched this. They have also given me the most unbelievable headaches. I have regular physio, again, that doesn't touch it... I am waiting on a call back from the rheumy to see what the next step (haha, if only that didn't make me wince) is!

Anyway, I'm thinking, that whatever it is, this is not going to disappear overnight and I have a problem, this is seriously getting to me. I have "accepted" many things. My life has completely changed. I am very unlikely to ever ride, do aikido or work again...and those are just the headlines. BUT I can't accept that I can't even do a half hour shop, can't even do ten minutes right now.

I need that minimum that most people take for granted. So, I have got round to thinking what can give my poor feet the most rest? Could a cane (or canes) help? or crutches?

Now, the problem here is that my wrist tendons are also very bad. I'm thinking that a cane might be possible as perhaps the actual weight on wrists is less and I could strap them but wouldn't crutches put too much weight on wrists? Then again, crutches would surely relieve the most weight off feet...

Do canes relieve weight or simply help with balance? I know crutches relieve a lot (having broken my leg years ago).

You see, I'm going round and round in circles...

It's silly, there's a work event that hubby has to attend on Friday. We usually go together and I really want to go but right now I must be mad for wanting to do this. The thing is, we mainly survive because he is self-employed and works all the hours he can. He has never ever made me feel in any way "dependant" on him and I can kind of kid myself that we're a team, that I help him in his work and doing things like next Friday keep me in that comfortable frame of mind. They make me feel that I'm normal, that I'm still young and that we're in this together...

SO...if you have any thoughts, advice, experience of achilles tendon inflammation, I'd be most grateful.

Love and hugs to all,
Katharine

 

[debatat]

Katherine

My heart goes out to you. I have had that tendon problem in my heel, then in the other heel, then in both, but thankfully for me it only lasted a short time in both. It must be horrible for you. I found I couldnt fit shoes on my feet and had to buy a pair of clogs especially!

I can also empathise as I have arthritis in my hands and I am finding that using my cane or crutches which has always been difficult as it aggravates the muscle weakness, is now impossible as after a few minutes the pain in my hands is unbearable due to the arthritis. So I also am in a quandry wondering what the next step mobility wise is.

Im sorry I cant help more, I just wanted you to know you are not alone with this problem and that someone else understands. As for the social event, I would rest before hand, dose up on painkillers, then if at all possible walk in on crutches/stick, then sit down and let people come to you. I dont know if it is that kind of event, but if something is that important to me that I have to go then that is how I get round it. The sticks let people know you are ill and not just avoiding them!!! As it is for a short time it shouldnt aggravate your wrist problem too much.

Other than that, I dont know what meds you are on, but is it possible you need steroids?

Hope the situation improves, let me know how you get on.

Deb

 

[Katharine]

Thanks Deb

I'm on plaquenil, imuran, prednisolone (12.5mg maintenance), carbamazepine (peripheral neuropathy pain), piracetam (neuro problems), aspirin...NSAIDS when needed (nearly all the time), vitamins (D, 3xB), calcium...paracetamol when needed (headaches mainly)...I think that's all :lol:

Oh yes, and I do also have pretty bad muscle weakness issues due to a polymyositis overlap. This does affect my ability to do anything much with muscles and I suppose would especially hinder crutch use. My shoulders (tendons, muscle and joint) are not up to much either...crikey, If I were a horse, I'd have been shot long ago :lol:

Katharine

 

[debatat]

Hi (((((((( Katherine )))))))

sending hugs your way as you really need them. I do really empathise with your situation as I have similar problems although yours are a lot worse.

I really do think a chat with your rheumie is your best bet, maybe the steroids need to be upped or a local steroid injection could help? Obviously I am not an expert, but from reading I do believe that is what is usually done.

Have you tried those gel pads either heated or cold ( whichever suits you best) on your heels, you can buy wrap around ones? I hope your rheumie calls soon as it can be so frustating when you already 'cope' with so much and then that extra thing gets thrown in, and it reduces our activities even further. :sad:

Dare I suggest using a wheelchair for a few days?

Keep me updated

Deb

 

[Katharine]

Hi Deb,

I'm sure you need the hugs just as much as me. We all have our own battle and none are less significant to the person dealing with it.

Yep, I've tried heat, cold, salt soaks...

I think that steroid shots are generally not given in heels and around the achilles as they tend to further weaken the tendon and can put you at risk of spontaneous rupture but we'll see what the rheumy comes up with.

Yes, you dare suggest the wheelchair. Not an easy one to actually take the step to use. I mean, it feels silly as I can still walk, just really not far
BUT actually hubby has just suggested that we do that for Friday, then at least we're "sure" that it'll be OK and we can enjoy ourselves.

hugs back to you (((((((Deb))))))!!

Katharine

 

[Marshmellow]

sending you big hugs as all those 'i'm normal' thoughts are very familiar

i don't have the same tendon problems as you but do have terrible joint pain and fatigue so this week i gave in and used a wheelchair (first time)to go to a shopping centre with a friend-she is a great mate and has seen how this illness affects me and thse 'issues' i have with wheelchairs and being nornal etc but WE HAD THE BEST EVER SHOPPING TRIP!!! because i wasn't pushing myself to appear ok!!!

hope this helps...but in case it doesn't:hugbetter:
Rachel

 

[lazylegs]

Hi Katharine,

The cane is good for balance. It will not really help take pressure off the feet. Since you hands are having trouble, gripping the cane will most likely aggrevate them.

Crutches would be better than the cane, but then again your hands would be impacted. You would be able to lift one foot at a time though.

Another viable option would be a rolling walker with a seat. It is easier to maneuver than a wheelchair and you still have someplace to sit. The seat is not very comfortable for any length of time though.

The best idea is the wheelchair. A wheelchair will get you off your feet and you will still be mobile. Maneuvering the chair might bother your wrists but not nearly as much as a cane or crutch. If you do get a wheelchair practice beforehand. Rotating the two wheels in the opposite directions will allow you to turn on a dime. That will come in handy in a crowd or the bathroom.

Going to affairs like this always seem daunting to me beforehand. Once I am there I always enjoy myself. My mind is so busy with all the conversations any discomfort gets pushed to the back of my mind.

Have a great time.

Take care,
Lazylegs

 

[Joandublin]

Dear (((((Katharine)))))

I dont know what to day. I feel very sorry for you in that amount of pain all the time. Everyone has given good advice based on their experiences and I do think that getting a wheelchair for your special event is the best and wisest thing to do. I can only imagine how hard a decision it is to make but maybe after an evening with minimal or no pain, its something you can consider when you have to go out on trips, events, etc.

That kind of pain from tendon trouble is terribly wearing and distressing. I doubt that a cane or crutches would suit because of the additional strain this will place on your wrists. Right now I cant use my cane at all because it causes unbearable pain in my tendon in the right arm. I just keep hoping my joints will hold out until I get the tendon stuff resolved - else Im kinda stuffed for mobility as well.

I hope you get the wheelchair and I hope you have an absolute ball on your special night out. You and your husband deserve a nice treat and you dont want to be paying for it for days or weeks afterwards.

Much love and hugs
Joan:rose:

 

[nicky00]

Hi Katherine.

Probably not much relevent to help but I will outline my experiencs and all the 'advise' I have been given over the last two years 'very on and off' with the achillies problems I have had.

Its hard to remember it all now but original symptoms:
achillies were throbbing and stabbing like nerve pain, whilst at rest or not,in bed at night etc.
~Accompanied by having to push myself like an old woman out of a chair with muscle stiffness.
Leg calfs would lock as I walked, took me ages to get anywhere.
Bottom of my feet like walking on pebbles.
~Feet toes middle two, tighten like the string were being pulled so they clawed and cramped.


Thats a general background of what I can remember.

Rhumie was hopeless coming up with anything.
A trip to St Thomas in london and my leg cramps were explained as thus.
Lupus hallmark of muscle/qchillies stiffness means the leg calf muscle goes into spasm hence the locking feeling.

Over the years I have been able to walk more and more and rehabilitated a lot of condition back more recently, the achillies is a lot better, feet toes still cramp and claw, calf muscles still stiffen and spasm but not anywhere near as much. as they used to, its managable.

A visit recently to a physio ( to improve what I already have) and this is what she told me.
The muscles although now strong are have lost their length and stretch due to the lupus effect of stiffness etc etc.
The lack of length means I will always have the problem unless I can re stretch them . Muscle has memory so Ive been given some exercises to retrain my muscle memory.

1. Gastreocnemius stretch
and
2. Soleus stretch.

3 to 5 times a day (good days)

St Thomas advised against cortisone injections as they tend to rupture the achillies.

It sounds like my problems dont even touch yours but I thought I would document it anyway.

Good luck Katherine. I do remember how painful it was a long while ago to even stand for a period.

Nicky

 

[Douglas]

Howdy Katharine,
I had cruttches once; hated them but that's just me. Canes/walking sticks I know since I carry one most of the time, as my wife says, "When he needs it and at other times just for swish." The important part of a cane is the handle. I have several designs and vary them according to need. Somedays a hook is just agony in my hand; the next day the knob may be problematic. It certainly helped when I was given my first flat handled fold-down cane. It now lives in the saddlebag of my motorcycle. I know it must look daft to ride in on a big black cruiser, get off and flip out a cane to hobble away.:lol:
I trust you will soon find something to ease your mobility problems.
Douglas+

 

[Katharine]

Thanks all for the kind words and advice.

Yes Nicky, those stretches are the ones that the physio said I can do at home between visits. I don't have the muscle problems to that extent though they do tend to be too "hard" or knotted at times. I don't get cramps at all.
I do generally push myself out of chairs but it is more a question of muscle weakness. The similarities are still there though and what you said was very useful.

Thanks Lazylegs for the wheelchair practice tips. I'll make sure I get one early enough to practice.

And thanks everyone else for the hugs.

Douglas, I often think about you roaring around on your bike and then hobbling off with your cane. It's a marvellous illustration of the paradoxes in life and the fact that, even if we do need help for some things, it doesn't mean that we can't still enjoy a lot of others.

thanks again all,
Katharine

 

[lin]

Katharine i have the same problems as you, lots of tensdons probs, infact when i asked the physio would htis ever go, she said in someone who doesnt have lpus yes, but in your case not really, i do the exercises to as we all know what to do, easier said than done but not when they arerealy that sore

i have a walking stick, but i would say stay with the crutches, as it puts farto much pressure on the hands and yes i have probs in them too lol lovey lupus hey?

sedning you grrat big ((((((((((((Hug)))))))))))) Lin xxxxx

 

[Pink Pearl]

HI Katharine,
I am very sorry you are dealing with this. As a former athlete, you are very well aware of how important it is to balance your body on your feet...."sweet spot".
I am going to suggest that you go back to the sport store and have them make a set of "custom footbeds." These are hot molded to your entire foot, not rigid like orthotics, but remove tender spots on your feet. They come in bases of semi rigid plastic with thin foam overlay, or cork with thin overlay. They are an amazing creation.....and can help you beyond belief on taking off the load in sore pressure points, and redistributing it to a better more balanced you.

I have a rolling walker with a flip down seat, a quad cane which I found more useful for me as my arm follows a more normal back to front "walk" with my hand. I also have found that more helpful when I need a balance assist. A single point cane did not give me that extra balance I need. I vote against a crutch as it puts your armpits displaced, and more stress on your elbow and wrist, not to mention the hands in a somewhat abnormal position.

I have used a wheelchair, prefer to use the walker if I must use an assist, but I don't have tendon problems. I find that the walker or cane help me to maintain a more normal erect spine than crutches do. You can also use a wheelchair as a "walker" of sorts and use it to sit when your body demands a break.

Good luck which ever you go with, but have FUN anyway.
Sally

 

[Katharine]

OK guys, just to let you know...I didn't back down!

I went and collected my borrowed wxheelchair from the red cross today. It's kind of flashy turquoise blue!!!!

Anyway, I think that it is best for this particular "long" day/evening and maybe on other long ones too.

It's an odd step to have to take but a hurdle to be got over which could mean memories of trips that include something other than severe pain.

And at home, I'm working on my exercises etc. to get my heels better anyway.

thanks to all,
Katharine

 

[pollianna]

katharine, I have the achillies tendon thing. Do not wear flat shoes as it puts a terrible strain on the calves and the achillies tendons, even half an in cheel will help

warm wishes Pauline

 

[Soundy]

I had similar problems ... then I developed heel spurs where tendon
was too tight and rubbing against bottom of heel bone ... had injections
in bottom of heels around spurs (not in tendons) and was made to
wear orthopedic boots to bed at night and any time I was sitting around
doing nothing ... the boots held my toes in a pointing up position ...
it was painful and irritating at first but in the end helped alot

 

[debatat]

Hi Katherine

How are you doing now? I hope that your event tomorrow night goes really well!!! Have a great night.

Deb

 

[greenhaggis]

Katharine,

Hope you have a lovely evening tonight!

I can just imagine you spinning round in the wheelchair, looking cool and beautiful!

 

[Clare.T]

I too hope you manage to enjoy the evening and I am glad you had the courage and determination to go ahead with the wheelchair solution. Reality can be very grim to face up to.

Here's to better days

Many Hugs
Clare

 

[Katharine]

Hi all,

Well yes!!! Of course I went ahead with it - I'm a very determined person at times :lol:

Seriously though, it was absolutely great!!! So easy for me and a lot less tiring. I mean, for years, even without heels being this bad such events have been more pain than pleasure and recently I realised that all my memories of trips out etc come down to pain (not a nice realisation).

I also realised, as soon as we were there, that there is no way whatsoever that I could have managed any other way, it would have been totally impossible - loads of people standing around for ages on end, talking about nothing with a drink in hand - honestly salesmen!! (Hubby's the client, not the salesman).

I laughed about it a lot and wanted hubby to race me through the car park. I think that helped him to be OK with it. Also, he saw that no-one he knew actually even reacted to me being in a chair. Need to improve hubby's driving though :rotfl:

On the flat and for lift manoeuvres etc. I was able to wheel myself so didn't feel "parked" in places. Obviously, going up hill, I wouldn't have the arm or upper body strength to wheel myself. Kerbs would also be a big problem as I haven't quite figured that (and it was a heavy, clunky red cross chair - I'd need something cross country :lol.

I think it'll take a while before hubby will sort of understand that this might be necessary for more mundane things like doing the shopping but it's a big step in the right direction.

Heels are still killing me but I can sleep around it and that's already a huge positive. I'm about to strangle my rheumy who still has't called back after my second call two weeks ago (did also call to check she had the message this last Monday). Most unlike her but it's annoying me.

Hope this finds you all well and so much thanks for the encouragement.

Katharine