[Katharine]

Hi all,

I thought it was maybe time for an update.

As many of you know I've been having trouble with my heels and in particular my achilles, see thread here (if you're brave enough it's long)

http://www.thelupussite.com/forum/showthread.php?t=73703&highlight=achilles

My heels are, mostly "better". They have been that way for two weeks now and I haven't a clue why. It is a dramatic improvement.

I had to travel a bit a couple of weeks ago and a couple of days before (thankfully) things started to improve and have stayed improved.

It is a total mystery but it is now very clear that TWO things were going on. My heels and are still quite tender, especially if I walk a bit more but it is the kind of tender pain one would expect from "relatively" mild inflammation with calcified tendons.

The other pain, that came so suddenly and left so suddenly is a complete mystery to me. It was so sharp and yet almost dull at times. When I wore shoes or my heels touched the mattress, if my feet touched off each other, rested on the floor (driving was a severe no no) they almost felt the type of pain that you get from very extreme cold (I'm talking glaciers here), a burning sharp pain - and no they weren't cold. A mix of that pain and someone sticking a very sharp knife into the heels and down to the bone.

I am wondering if there might not be a neurological element to this... I do have neuropathy in both feet and a little up my legs and already take tegretol to limit neuropathic pain (it allows me about a half hour standing time as opposed to less than 5 minutes without).

I'm seeing the lung specialist next Wednesday (another story that one), the neuro on Thursday and the rheumy the Friday of the following week. Hopefully between the neuro and the rheumy someone will have a suggestion.

As the worst pain magically disappeared, I haven't gone ahead with the shock wave therapy. I think we are truly dealing with two things here (and no, one of them is not in my mind :lol.

For a lot of the time, along with the heel problem I have also had a return of severe headaches which, in turn, don't help my cognitive issues... again, is that linked or a total coincidence? no idea.

It would be so nice if we could clearly say "that is due to that, this is due to this"... why is it all so complicated?

Any ideas are welcome and those include probing questions to ask of the neuro and rheumy.

Thanks for your patience in reading this far :rotfl: I wonder if longwindedness causes symptoms!?

Katharine

 

[keebler]

Hi Katharine,:hug:

I am sorry that you are going threw so much. Lupus and everything that goes with it are so confusing. Not knowing why or what started it.

I am thinking of you and wishing you good vibes:goodvibes: and luck at your many appointments coming up.
Love,
Lyn

 

[lin]

hugs Katherine, with hte heels and under the feet im the same, do have physio, and she stretches them, but when i asked about this lot like will thisever go, she said in someone without sle yes but becasueof thislot no. grrrrrrrrr!! so like most htings we prob have to live with it all grrrrrrrrr!!

i have lots of prosbwith tendons, i hope you have good apointments to come fingers crossed


take care Lin x

 

[Pink Pearl]

Hi Katharine, you have quite a schedule set up for appts. I hope you can hold up to it.

On your heels, do you have heel spurs? I have them but have never had problems from them. Neuropathy can be a good thing I find. Have you checked with a sports store to see if they make "custom foot beds?" I had them for my ski boots and other shoes, and they made everything so much better. They relieved pressure spots. These are not orthotics, but a whole footbed which fit inside shoes.
:shrug:
Plaquenil caused me to have increased, daily, continual migraines. I had one that lasted 4 1/2 mos. Yup, same continuing migraine. Don't advise it. You might talk to your neurologist about it. I've known a few other sle patients for whom the plaquenil also caused problems. How I figured it out, was that I had run out of my plaquenil and had just not gotten up to the pharmacy to pick up a refill. I was off it for 5 days, and had NO migraines during that time. :umm: I got my refill, took one pill and had a migraine start up less than 30 minutes later. It was the last plaquenil I took. I now have my migraines down to about 5 or 6 a year. Considering where I started, that is impressive.

Have you tried neurontin to deal with your migraines and foot pain? The concept is that since it works to balance the "electricity" in the brain, and a migraine is abnormal dialation in the brain, it does the same action to control the blood vessels as it does for circuitry. Worth a trial. In the "dark ages" of lupus knowledge it was thought that the brain could not be affected with sle. Well, now that is known to be wrong and it is accepted that the brain can have seizures, migraines, and a few more problems.

Due to my celiac sprue, I have a lot of scar tissue in my small intestine. As a result, I take much higher doses of meds than most people can tolerate. Much of what I take flushes out since it can't be absorbed thru the scar tissue. That said, when I was having the "migrainous giganticus", I was taking 1600 mgs neurontin 5 times a day. I now have it down to 1600 mgs 2 times a day. The neurologist I was seeing at the time, he has since moved, said that it was safe to take up to 13,000 mgs per day without much problem.

Lupus can cause a condition in the lungs called interstitial lung disease. It basically stops the ability of O2 and CO2 from exchanging across the membranes. You'll probably be run thru a series of tests to see what is going on.

Good luck with the doctors and hopefully you can get some help with problems.
Sally

 

[Katharine]

Thanks all,

I do realise I'm asking pretty unanswerable questions here, so no feelings of guilt to those who can't reply :lol:

Lin, do you also have calcified tendons? This intrigues me as I believe it is pretty unusual in lupus. Also, I have a "calcified nodule" in one of my lungs. The calcium deposits are ALL OVER my body. Hips, shoulders, wrists, knees, ankles, heels,....

Sally, thanks so much for so many suggestions. I do have custom foot beds. Unfortunately they don't help at all. Even the lightest of touches seems to be too much when it's like that. I don't have heel spurs but the calcium depositis show up on ultrasound.

I don't think plaquenil is causing me any problems as I did go through several months with only about one light headache a month. They just seem to come back so easily and the trouble with headaches is that the causes can just be SOOO mutiple.

I have never tried neurontin - I don't even know if docs use it here as it has never been mentioned. It sometimes very different what is available. For example Lyrica is not available to anyone who doesn't have diabetes (for diabetic neuropathy) or fibromyalgia (approved pain clinic dx).

I was checked out thoroughly for interstitial lung disease last year. I also have polymyositis which increases the risk. Thankfully there are no signs of fibrosis so even if it is that it is at a very early stage. I know there is something not right. The lung specialist thought that maybe the problems were due to muscle weakness around the lungs but the pain I have on breathing in is the same as that "inflammation" pain after a severe attack of bronchitis (which I haven't had for 9 years now). The only difference with this pain is that it has been there constantly for about three years and is getting steadily and gradually worse.

Thanks again all,
Katharine

 

[greenhaggis]

Katharine,

Can't be of any help "wish I could", but sending my love!

 

[Jmaca]

Katherine, I also have calcified tendons all over my body! You're the first person I know who shares that symptom. My doctors have always been surprised at the amount of calcium deposits throughout my body, but also kind of unhelpful about it. :sad: They have always said that not much can be done about it because they're everywhere.

I have calcium deposits throughout my feet and on my Achilles tendons. I was first diagnosed with plantar fasciitis, and then heel spurs, but more and more calcium deposits have been laying down.

About 20 years ago, when this first started up, I saw a physical therapist who specialized in feet. She told me to wear New Balance sneakers, the ones with a roller bar in them. I did that, and it helped for a few years. Then the pain came back. So I added Dr. Scholl's heel pads to the New Balance sneakers, but then that stopped working.

The last two years, I've gotten much relief from wearing Dansko stapled clogs. Now they're all I can wear. They take away the worst pain. The trouble is that it takes time to break them in, and since I also have a lot of arthritic lumps in my feet, they hurt for the first month while I'm breaking the shoes in. I've decided to take the next pair to a cobbler to see if they can be stretched a bit before I put them on.

My pain is sharp and takes my breath away sometimes, but other times, it's dull and achy. Sometimes it throbs, and sometimes it feels as though someone's sticking either a very hot or very cold needle into one spot and not removing it. Ugh. Basically, the whole gamut of pain. And while there are some constant spots, there are others that come and go.

I've also been told that calcium deposits in my hips might be affecting my feet by causing pressure on the nerves.

I've had inconsistent results with steroid injections. Sometimes works, sometimes doesn't, and my doctor doesn't want me to have any more. Truly, it would be hard to say which joint to put them in - they're all miserable.

I'm waiting to see my doctor tomorrow for the same kind of pain in my lower abdomen. I'm a little worried I'll be told that the calcium deposits are forming there too.

I hope you can find some relief. It's been a long journey for me. I have great sympathy for what you're going through.

 

[Katharine]

thanks jmca and EUREKA

Wow jmaca, it is indeed odd to find someone with calcium deposits - hate to be happy about such a thing but I feel less alone now and yep, I do have them everywhere, literally - even a nodule in a lung.

As, the problem has recently improved somewhat I have suddenly realised this has to be TWO things and the day before yesterday I hit my heel (gently) off the floor - my oh my the pain of it, then about two minutes after, SEVERE pins and needles....

Then, last night, I spent the entire night awake with electric shock like pain in my heels - I mean severe voltage here!!

So, maybe I have GOT IT :bashhead: - I do have peripheral neuropathy - pain treated and had improved with tegretol - it was more "all over" my feet but I think that this extra pain, on top of the tendons, is PN!!

Now that might seem silly to be happy about that, but maybe, just maybe I'm at the beginning of an answer - could be linked in with the headaches too....

I'm seeing the neuro on Thursday - hope she has some ideas.

thanks again all :grhug:

 

[debatat]

(((( Katherine ))))

Sorry that you are in so much pain, I think it is always harder when we don't understand why. I am wishing you a great appt with your neuro on Thurs. Sorry I can't help any further.

Hugs

Deb

 

[Katharine]

Hi all,

This should be the final update!

My heels are still okish, the odd slightly worse day but no-where near where they were. The tendons get irritated if I walk a lot (solved that by attaching the dog to the bicycle, that way he pulls, I hardly pedal and we have a great time!). The other heel pain, the one that was so severe, is only slightly present if I have to drive more than a half hour. Before I couldn't even do two minutes so that's fine by me

I have seen the neuro - had another EMG done - this one came back good :woohoo: and then PEV and PES (different types of evoked potentials). Still waiting on results of the PES but should be goodish.

Had another MRI - it's also OK, just the same ferrous deposits as before.

Apparently, the heels can't be neuropathy as the pain from neuropathy would have started in the toes rather than the heels...

I also saw the rheumy - she is wondering if the solu-medrol may not have worked afterall (the pain stopped 10 day after the IV)... she says some people can react very slowly but it all seems a bit unlikely to me.

The neuro prescribed a course of injections which eventually calmed the migraines and they're now controllable.

I think the only "theory" we might have here was that it was all just part of a flare as I had the heels, headaches, extreme exhaustion, and extra tightness in the chest all at the same time.

All a mystery really and I'm not making much sense here but just wanted to thank you all for your suggestions and especially your support through those few months.

I am now much better generally. Heels, head, energy breathing... still can't remember a thing but I suppose you can't have it all :lol:

Katharine

 

[pollianna]

Katherine :hug: glad yr feeling a bit better. try wearing a low heel as often as poss, takes the pressure off the achillies xxxP