[Katharine]

Hi all,

I thought it was about time I updated you on my painful feet seeing as you were all so kind with your suggestions.
- see previous post
http://www.thelupussite.com/forum/showthread.php?t=70432&highlight=painful+feet

The tegretol has actually had a very good effect. I mean my feet are stilll rather "tender" and I can't stand that long but they have hugely improved (the neuro asked me how I would express the improvement in % and I said 70%) and I actually dare go and do a little shopping now and then and no longer find myself sat on the floor or in tears. My little "trip" to Ireland last week would have been sheer torture without this improvement. I still have quite a bit of pain in the heel but can get relief from standing forward a bit on the balls and toes which a month ago would have been impossible. I don't even know if the heel pain is the same thing. It might not be. My hands have also almost completely stopped hurting at night, so obviously the two really were linked.

I saw the neuro again today and she has asked me to increase the dose of tegretol further just to see if I obtain any further relief. If I do, then great, if not, we'll drop the dose back down to where it is now.

The neuro also did an EMG. I had wondered why she had decided to do it herself but apparently she was a bit doubtful about the last one of my legs. The report seems to have disappeared somewhere and the only comment she has is "normal" which she found odd as it didn't tie in with physical examination. Anyway, she did both legs and hands/arms again. The hands/arms are much the same, a slight worsening, but very slight. She says the legs are no way normal as she had quite a lot of difficulty actually doing the tests. She often had trouble finding the right "spot" and testing properly (which wanst' the case with the hands/arms). I then had to guide her when she did finally hit the spot as she couldn't "see" anything on her machine. It's not particularly serious as the nerves definitely work but she says I have significantly reduced sensitivity. I actually knew that but it's cool that someone actually believes me now!

Don't ask me more on the technical side of it, it's all pretty new to me this nerve stuff and I get mixed between the French and English. I'll probably understand more when I have seen her report as I'll have time to read it through. She had explained to me before that there are two types of neuropathy. She described one as affecting the "electric cables" inside us and the other affecting the "coating" of those cables. I don't know which kind I have and I suppose it doesn't matter much so long as things remain stable.

I've probably explained all that in the most unclear way possible :lol: Sorry if I have. I haven't posted much these last few days as I have been so utterly exhausted but I managed to sleep really well last night and another two and a half hour "nap" this afternoon so I thought I'd give it a go!

hugs to all and thanks again for all your suggestions. Here's hoping it continues to improve!

Katharine

 

[sjink]

HI Katharine
Thank you for the update. Glad you are feeling better. Do you see a neuro as well as a rheumy? I have been living with foot pain thinking it was just how it had to be but you are describing an improvement from the pain tenderness that really interests me.
I am not posting much either just now, either asleep or catching up. So it goes...
Love Sara

 

[Maia]

I'm glad to hear you've had such an improvement from that foot pain. It is refreshing to hear about such big improvements with one medication! I have also just thought that my foot pain is something I just have to live with, and rest them when necessary. I do believe mine is quite directly related to lupus though instead of a nerve issue.

You did a great job of explaining those nerve study findings by the way too!

 

[karen.w.]

Hi Katharine,

I'm so glad you are finding some relief from the new medication what a relief for you! you explained it all very clearly because even I understood and I'm hopeless with all the 'technical' side :hehe:

Good luck with the increased dosage :luck:
I hope your dad is feeling better. Try to get plenty of rest.

love karen x :hug:

 

[Katharine]

Hi Sara,

Yes, I do see a neuro as well. It was the rheumy that sent me to her and they work well as a team. I see the neuro about once every six months except if anything goes wrong. I also see a pulmologist but hopefully will just need to see him once a year for a checkup to make sure my lungs are stable.
The only other doc I see, also once a year, is the endocrinologist as I also have hashimotos (underactive thyroid).

All my docs are at the same hospital and thankfully there is a non jealous culture of working together and sharing info which is refreshing and far more pleasant for the patient. It actually seems to even extend outside of the hopsital, a sort of professional courtesy between docs. For example, I have never ever had any doc question my diagnosis.

Katharine

 

[greenhaggis]

Katherine,


The news seems another step forward to me!

I'm glad that things are feeling better for you with your feet!

Love Lesley

 

[lazylegs]

Hi Katherine,

Let's hope the problem is the electrical cable. The other one is the demylination of the nerves and you don't want that.

Good luck with the increase of the Tegretol. I hope it takes care of the rest of the pain for you.

Take care,
Lazylegs

 

[nicky00]

Good to hear Katherine that you have relief with the pain.

I dont have neuro problems as a diagnosis and my feet are so much better but I do from time to time have a level of pain which canbe uncomfortable.

I have stiff calf muscles so I assumed its just a related problem all down into the foot.
Calf got better so did the feet.
I relate mine to lupus and not neuro.

All food for thought tho
Take care

Nicky

 

[KarolH]

Katherine,

I am glad your foot pain is better. There is nothing worse then when your feet hurt.

I have a lot of foot pain and have developed a drop foot on the right side. I wear a brace when need be and it helps. I also have severe muscle spasms in my legs which hurts like the dickens.

I am glad your EMG studies are all ok. I wish mine were too. It is good to know your nerves are working and cooperating.

Keep us posted and I hope you continue to improve. :wink2:

 

[acard]

Katherine,:hug:
I am glad you are doing better. Does the tegretol make you sleepy? I take it for my seizures and the first week on it, I thought I wouldn't wake up because it just had me out cold:lol: Let us know when you find out which neuropathy you have.


HUgs,
Becca

 

[keebler]

Hi Katherine,
I am glad you read that you are having improvement. When we feel better it makes the world that much brighter.

I hope the increase of tegretol helps you even further.

Love,
Lyn

 

[lin]

Katherine i hope you continue to feel better with your feet, there is nothing worse, i know.

sending you posivite vibes Lin xxxxxxxxxxxxxxxosy:

 

[Katharine]

Actually, as to the question of which kind of neuropathy...how do they tell?

I mean, the neuro hasn't mentioned those differences since that time. She had just said that treatment would be very different depending on which type but as things seem pretty stable I'm not getting specific treatment for that. She did mention in the beginning that as it seemed linked to lupus activity it was most likely a question of getting my lupus under control and that would, in turn, look after my neuropathy.

No Becca, Tegretol hasn't made me any sleepier than usual. I'm always sleepy anyway :lol: No, seriously, I even got a few good days before having to go to Ireland and I hadn't had those in ages. Maybe the reduced pain helped as even if I had got used to it, hands waking you at night and things like that don't help and the constant pain on standing and walking is very wearing.

Now, I'm wondering if the heel pain is the same thing and if it is not what I can do for that. I have always worn very flat shoes and I need bounce in my shoes for obvious reasons but I'm wondering if it is not compounding the heel pain by putting more weight on them. I guess the answer is wait and see if the increased tegretol makes it go away!

all these things are so complex...fascinating at times but complex

Katharine

 

[KarolH]

Katherine,

Let us know how you progress on Tegretol.

I do hope it works for you and the neuropathic pain.

I bet the heel pain is nerve related.

 

[lazylegs]

Hi Katherine,

Demylination can sometimes be picked up during the nerve conduction study. The nerve may not have a good response or is unable to respond in rapid succession. When you have an EMG the way the muscle responds can show decreased nerve stimulation and areas of atrophy due to it. MRI's can also show possible areas of demylination like in MS or Transverse Myelitis.

The myelin sheath can regenerate. During a nerve conduction study the nerve would respond but not usually in rapid succession.

I always wear flat shoes. New Balance shoes give me a slight rocking motion making it easier to walk. When I was rehabbing from my achilles problem the doctor gave me thick cotton pads to put in the heel of my shoe. Every few weeks I changed to a lower pad. Doing this allowed the tendon to stretch more slowly which lessened the pain. I don't know if it would help you but it might be worth a try.

Take care,
Lazylegs

 

[Katharine]

Thanks so much Lazylegs that's a great explanation and I'm sure it will help when I get the report back and if it doesn't I'll try and get her to explain it next time though next time will be in 6 months and meanwhile I suppose it's not that important as it doesn't seem to "worry" the neuro and doesn't affect me much (except the pain bit). What I mean by that is I don't have major balance issues and although my feet tend to go to sleep a lot, I can still drive etc.

I do wear flat shoes. Indeed I have never ever worn anything else and before these problems never suffered foot pain. When I was 14 I broke my ankle and was never able to wear even the slightest heel as my ankle would buckle over even years after (result of no physio follow up in Ireland, finally solved 6 years later over here).

Katharine

 

[nettyunicorn]

Hi i am so glad your treatment is working! There is hope for me yet!!!!!!
I dont have a definate dx of lupus as yet but have many of the symptoms! bloods not fessing up! But Drs do say its definate auto immune .my feet are really bad first dx as plantar fasilitis and achilles tendonitis, but treatment not sorting pain and i have wondered if it was all contected. I am about at the stage where i give up and just accept the fact that my mobility is gradually getting worse and theres nothing i can do about it, but you have given me hope! Will keep on with my GP and ask for other solutions perhaps they will start helping me!

I am suprized at how many of us have bad feet for one reason or another perhaps i will start a new thread and find out about it!

Thanks again!

NettyxxxxDevon ukxxxxxx