PF and NeuropathyPosted by Donna A. on 8/10/03 at 23:48 (126711)
I was running but had to stop due to foot pain. That was 35 pounds and 2 years ago. I went to a podiatrist and he examined and xrayed and said I had PF. I got some special shoes and orthotics, stretched etc. Nothing has helped. I am a teacher and am on my feet all day. At the end of the day I am exhausted and in a lot of pain. I went back to the doctor and they sent me to a neurologist. They have done 2 MRI (Brain and spinal), and 2 EMgs/NCS. They found I have a symmetrical sensorimotor polyneuropathy. But my foot pain is more closely related to the area affected by PF. There is also some swelling on that heel. I am heading back to school and need advice as to what my next 'step' (no pun intended!) should be. And can anyone recommend some good shoes for someone who has to be on their feet all day. Using a cane to ambulate around the house in the mornings and at night. Any advice will be appreciated! Thanks!
Re: PF and Neuropathykellys on 9/03/03 at 11:30 (128692)
How are you doing now? After ~ 3 years of trying everything except surgery for PF/TTS, I was diagnosed with 'idiopathic peripheral neuropathy' 6 months ago. I got suspicious when I developed new but similar pain in my hands/forearms so finally got to a neurologist. I was hesitant to try drugs for pain relief since I am relatively young and otherwise very healthy, but I've been working with my neurologist and pain doctor to find the combination that works for me. The side effects are annoying but tolerable and overall my quality of life has improved dramatically. I'm also trying out alternative therapies to complement the conventional prescriptions. I checked out a book from the library called 'THe Chronic Pain Solution' by a Dr. James Dillard. He is affiliated with Columbia U (NY) pain clinic and advocates for a multi-pronged approach to chronic pain(conventional/alternative). There's a section in there specifically on peripheral neuropathy. Typical conventional drugs used to treat PN-related pain are tricyclic antidepressants, certain anti-convulsants (e.g. Neurontin), ultram (tramadol). A good pain doctor will be willing to work with you to find the right single drug or combination. Individuals respond differently to each drug, so what's right for someone else may not work for you. I'm converging on a good combination now after about 6 months and really am a lot happier. The pain isn't ever 100% gone, but for the most part it's at what I'd call a 'manageable' level where I can generally exercise (bike, swim, weights) 5 days a week and handle the daily activities (cleaning, errands) much more readily. Still have some ups and downs but it's never anywhere near as bad as before I started on the drugs, and I am learning to not be so hard on myself.
You may also wish to check out the message board at http://www.neuropathy.org .
Good luck, and know that it's ok to seek out help for your pain. I am glad I finally got to a neurologist, pain dr, and physiatrist (rehab dr). Not to mention a terrific yoga instructor :).
Re: PF and NeuropathyBevN. on 9/03/03 at 12:54 (128697)
How was your Peripheral neuropathy diagnosed? Did you have a positive NCV test ? What other tests did your doctor do to give you the positive diagnosis ? How is your PF pain doing along with your PN pain?
What symptoms are you having now that lead you to the PN diagnosis? What meds did he put you on? Sorry to have so many questions , but I am going through this now to. Thankyou. Bev
Re: PF and NeuropathyDonna A. on 9/03/03 at 21:41 (128736)
My Peripheral Neuropathy was diagnosed with a NCS and the myelogram. The results were abnormal. My specific diagnosis was mild sensorimotor polyneuropathy. But I can tell you that my pain is FAR from mild. It is very severe at times. I had an MRI also, to rule out MS. My mom has MS and is quite disabled. She is 74...I am 47. Well, my brain and spine MRI was clear of anything that would indicate MS.
The shots I had in my feet have not worked. I am still in a bunch of pain. I am a school teacher and I noticed in the summer, when I could 'give in' to my fatigue and rest, and even sleep when I wanted/needed, it made me feel stronger. Now that I am back to school and on my feet, it has been 2 days and I feel pretty bad. Really tired and hurting alot. Even the electric shock like stabbing pains throughout my body are returning.
They put me on Neurontin at first for the PN. I had to stop. It did not really help my pain in my feet at all. It did seem to help with the electric shocks, but my head got all fuzzy in it's thinking. And when I am dealing with 51 kids all day....I had no time to be fuzzy. They wanted me to try something else. I refused. I cannot compromise my earning a living.
But I feel with the amount of pain that is returning, my work will be compromised anyway. Depressing huh? And no real answers. If this is PN and maybe PF...why am I so tired, pinging and stinging and hardly able to walk at the end of a day?!
Re: PF and NeuropathyDonna A. on 9/03/03 at 21:55 (128738)
Thanks for writing Kellys,
How am I doing now? Not good. Today was a bad day for me. Taught all day and then stood around at a xcountry meet to watch my son run from 4-7pm. I am tired, not to mention, in much pain.
I went to a pain clinic, but they wanted to put me on some drugs that I felt may compromise my teaching performance. I had a bad experience with Neurontin so I am wary of any of the 'new' therapies using anti-epileptic agents. I am taking an anti-depressant my PCP prescribe solely for the reason I had some pretty severe depression and anxiety concurrently with the onset of my fatigue, pain, and other MS type symptoms. My mom has MS. So, they ran MRIs and said they were clear.
Since I teach, I was off all summer. I did NOTHING. It was WONDERFUL. I was able to lay down when I was tired. Even sleep in the middle of the day when my fatigue usually tries to take me over. I was swimming and doing deep water aerobics. I was starting to feel great. Well, it is 2 days into the school year....on my feet all day and I am in the same pain I was in at the end of last year. I am pretty bummed.
Thanks for the book reference. I will definitely check it out this weekend.
I am totally into the alternative therapies. I am wondering how long I can continue in my career and when are the docs going to realize that I am killing myself to hold my position. I am a single mom who needs to work. I am starting to feel panicky about my health. If I work....I hurt. If I take the meds that make me stop hurting...I cannot perform my job satisfactorily. If I retire from teaching early, I cannot make ends meet. I would still have to work. What on earth am I going to do?
thanks for listening,
Re: PF and NeuropathyBevN. on 9/04/03 at 08:37 (128755)
Have you tried Topamax for your neuropathy pain ? I am on the Topamax and also on Ultram and they have really helped the burning and stinging and symptoms. The meds do cause me great memory problems though. However I am not working anymore due to the pain, there is no way that I can go back to work (nursing on my feet all day). Are you able to use a stool and sit at all? What grade do you teach? I do hope that you can find something to help your pain . Do you wear Birkenstocks , as they really help also . You have a nice day and keep in touch :) Bev
Re: PF and Neuropathykellys on 9/05/03 at 12:18 (128867)
to respond both to Donna and Bev
I thought I had (only) PF for the first two years, PF and TTS for the third year and finally got around to the neuropathy. After 2 years the burning pains on the feet, inner ankle and up the inner leg were getting unbearable and I was having trouble doing much of anything including work. Fortunately I have a flexible though demanding job and can hide in my office with ice on them a lot, wear whatever shoes I want, and mostly set my own schedule.
At the 2 year point, a doc FINALLY responding to my burning complaints and I got an NCV test on my legs. The doc didn't see nerve 'damage' but there was a lot of swelling in the inner ankle area and he diagnosed it as TTS on a _clinical_ basis (based on symptoms and visual cues rather than a test result). I iced a lot, discovered massage to ease my incredibly tight calves and hamstrings and took yet another NSAID (I tried 6-7 kinds along the way). The massage and icing helped but a few months later my hands and arms flared up. I work a lot at a computer so I sought medical attention thinking it was carpal tunnel or an ulnar entrapment. Went through phys therapy for ulnar entrapment (diagnosed after an NCV/EMG test on one arm only) but it wasn't helping. Everything was getting worse. I finally broke down in tears at a PT appt and my physical therapist was very frank with me and pushed me to seek a better answer from the dr. She thought (correctly) that it was significant the pain was symmetric and in all 4 limbs. I had gotten tired of dealing with drs and had just about given up. But with her urging, I went back to the dr that had been seeing me about the ulnar nerves. By that point, I had discovered the neuropathy.org site and thought it sounded like me. The (hand) dr put me on 10 mg elavil and referred me to a neurologist for possible peripheral neuropathy. The elavil made me incredibly sleepy but it was like someone turned down the volume on the pain and none of the previous drugs (NSAIDS) had done anything like that. A good hint that I had neuropathic pain. The neurologist scheduled NCV/EMGs for the 3 limbs he hadn't yet done and diagnosed me with mild neuropathy. When I complained that the pain was not mild, he said that 'mild' means only how it shows up on NCV but that the pain is actualy worst when damage is just starting. He switched me to nortriptyline since the elavil made me so sleepy. Meanwhile, my physical therapist suggested I also see a local pain doctor and physiatrist. She can't officially refer but I got the formal referrals from my primary care doc. Upshot is - the neurologist can't find a cause but we are treating the pain. The neurologist, pain dr, physiatrist all have a little different bent on the whole thing, so for me it's been helpful to see them all. Ultram doesn't seem to help me much, but nortrip/neurontin do. I was afraid of the neurontin side effects because I do advanced math for a living :) but I find reasonable relief at a low enough dosage that the side effects are manageable.
Like Donna, I have some 'triggers' and stress is one of them. Even now with the drugs, I'd be scared of being on my feet all day. As I mentioned before, I'm really working on a holistic approach to the whole thing (diet, exercise, stretching, yoga, meditation, drugs, stress management). I'd love to find a cause but for now am, in the words of my physiatrist, 'taking advantage of the window of opportunity the drugs provide' to just remember how much I enjoy walking the dog, gardening, cycling, and even just working without so much pain.
Donna, maybe you can try some of the drugs initially at a very low dose. What anti-depressant are you taking? The tricyclics work better for neuropathic pain relief than the newer ones like Prozac, though you should talk to a dr about any of this. Like anti-depressants used for depression, it takes at least a couple of weeks sometimes for you to feel the effects and there are a number of options. Everyone responds a little differently to a certain drug, and it may require some experimentation to figure out what you can manage. I'd expect a good pain dr will work with you and help you increase dosages slowly so you can keep your job while trying them. Pain drs also have other options like nerve blocks. My pain dr said that he has used other pain relief methods for patients who can not tolerate the Neurontin/other side effects. It may take some months to find what works best and you may have some yucky side effects along the way, but heck, it's worth a shot. What do you have to lose? I was VERY hesitant about the drugs for a lot of reasons, but now I am very glad I took the risk. And if the drugs don't work, don't give up. There are other options.
Good luck. Keep trying. Although I may never be able to get back to some of my pre-foot problem activities, I am so grateful to have found enough relief to re-discover a lot of the good things! And to think, I'd about decided I was stuck with the pain..
Re: PF and NeuropathyBevN. on 9/05/03 at 14:49 (128877)
You are so fortunate to have the type of work that you can do at your own schedule and sitting down :) It is great that you have found relief for your pain after so many years . The meds I take do help the nerve pain, however I still have the PF pain that I do not seen to be able to control .I think that I need a few adjustments in my meds and that may help , I will ask at my appointment on the 15th. However I have never been able to get any doctor to give me a straight answer. Everything I have learned has been from this board and from all of the help from the members, never the docs. I had to learn about the meds and ask for them on my own, they never offered anything to me. They were always vague and said 'maybe this' and 'maybe that' , and sent me on my way in pain , referring me to another doc, over and over and over. So it is up to us to educate ourselves and to ask for what we need , as the docs surely do not care . One doctor even said 'there is no such thing as PF, it is entirely in peoples mind, it is just sore feet and it will go away on it's own with no help at all '. We need to educate the doctors :D Bev
Re: PF and Neuropathykellys on 9/05/03 at 16:10 (128882)
I resisted going to a pain clinic for 2 whole years because one podiatrist told me 'pain clinics are for people with cancer'. Ugh. But recently I've found several doctors that give me better information, and I credit the physical therapist that gave me a shove in the right direction. I'm quite happy with my current docs, though I wish they could tell me what's causing the PN, but I realize that may not be possible. We've done a lot of testing (blood, clinical, etc.) and are waiting a few months to test again and see if there are any changes. The physiatrist, in particular, has taken quite a bit of time with me and pointed me to other sources of information for background reading. The doctors are not all bad - but we have to find the right ones and I agree that we need to educate ourselves.
You asked about the PF. I had ESWT twice which seemed to help and I still get weekly or bi-weekly professional leg/foot massages. Incidentally, I have wondered if the ESWT 'caused' the PN but I don't think so because the burning was never worse than the 3 mo just before the ESWT. I still stretch/ice/wear orthotics and only certain shoes that seem to work for me, sometimes wear a night splint, never go barefoot, and don't run, walk too far, or otherwise do activities that I know exacerbate my PF. My pain's not 100% gone, and like everyone on this board, I have better days and worse days, but the drugs turn the pain volume down a lot. I hiked 6 miles recently if that says anything. Unthinkable a year ago..
Re: PF and NeuropathyBevN. on 9/06/03 at 09:52 (128947)
The doctor I am seeing for the PF wants to possibly do the ESWT after I get the PN taken care of first with the physiatrist I am seeing for the PN . So that will hopefully happen and help with this PF pain finally :) One step at a time I guess. We have only one pain clinic here in our town and all he does is pump you full of drugs. My daughter goes to him for her migranes. I have been through two PT clinics and they did not help at all . So I just take one day at a time and hopefully soon I will be doing that 6 mile hike like you did also :D Have a great day :) Bev
Re: PF and NeuropathyDonna A. on 9/06/03 at 13:31 (128970)
I'm sorry, but what is ESWT?
Re: PF and NeuropathyPhil on 9/06/03 at 16:09 (128977)
What is ESWT ? It is a secret. We cannot tell you :))
Only those who aren't lazy enough to click on the link can find out.
Don't read the rest of the site because there is no information on ESWT for you to see :))
Re: PF and NeuropathyDonna A. on 9/07/03 at 11:31 (129025)
Re: PF and NeuropathyDorothy on 9/07/03 at 17:55 (129041)
I think Phil was making the point - and a good one - that one of the highlighted headers of this entire message board is 'E.S.W.T.' and another clear feature is the place to do searches for information on this board. Those two easily available and easily visible routes would have given you tons of information about E.S.W.T. His message to you is not a bad one, given that taking responsibility for one's own health to the extent possible is a good thing to do, and a reasonable first step would be to assume that you would be willing to do a simple search for information already provided to you. He was maybe being a bit sarcastic, but the underlying message is on target, I think.
Re: PF and NeuropathyDonna A. on 9/07/03 at 22:00 (129077)
Wow. Apparently you folks are in alot of pain and rather than be helpful to others without being self-rightious, haughty and judgemental is too much for you to accomplish. Is this a result of your disabilities or have you always been like this? Either scenario is sad.
Thanks for the pointer as to where to find the information, but no thanks for your attitudes. I myself am in far too much pain and have way too many responsibilities in my life to spend hours in a computer chair. Your responses make assumptions that I am a total idiot. I am at the beginning of this health problem and am just learning many things. Can you please work on refining your bedside manners?
Re: PF and NeuropathyDorothy on 9/07/03 at 22:19 (129081)
We all have 'way too many responsibilities' in life to spend hours in a computer chair, yet you wanted someone to spend their time to give you an explanation that was readily available to you. People on this message board are so kind and generous that many/most would happily do that, but I think Phil was making a legitimate point. I make no assumptions about anyone being an idiot, total or incomplete; in fact, my first assumption is that a person is of average intelligence and kind and of good will. We are all learning many things here, whether at the beginning or in the middle or years into this health problem. I am sorry if my response to you seemed - all of those things that you said - but my point of view still stands. I don't have a bedside manner - I am not a doctor - just another 'foot person' here. And all of our time is equally valuable and precious. The generosity of the people here is a gift, not an entitlement.
Best wishes to you~
Re: PF and NeuropathyAly on 9/09/03 at 09:52 (129266)
I'm sorry that the tone of the replies to your message seemed to get a little negative. I think some of us have spent so much time on this board that we forget that once we were unfamiliar with where all the info is on it. The first couple of times I came to heelspurs.com, I was a little overwhelmed by all the links etc., and I went elsewhere - I thought it was just a board for people who actually have heelspurs, not PF etc.
I guess my point is 1) Pls don't be offended by a couple of off-the-cuff responses and 2) to everybody else, let's be nice to the newbies here, we were all newbies once. Lord knows, sometimes I post some pretty stupid things, only to realize it the second I hit 'Post'. I'm glad no one's ever bothered to tease or ridicule me or scold me about it! Also, try to remember, many who come here are feeling vulnerable & overwhelmed about their condition - they may not take a person's humor as funny at all...
We should never laugh at anyone's question, nor should we make them feel stupid or unwelcome because they don't notice something that seems obvious to us. I now step down from my little soap box and continue on with my day.
Donna - pls stick around. PF can be hideous, you need all the support you can get. And you will get support here, I promise. :)
Re: PF and NeuropathyBevN. on 9/09/03 at 12:21 (129281)
I am glad that Aly answered your post as I wanted to , however I am not good with saying the right things . I was upset by the way you were treated , as Aly said we all are new at one time and we are searching for help and expect to be treated kindly and with respect. It was all new to you and we should be showing you the ropes and how to use the board . There are many wonderful and kind people here to help ,so please stick around and keep in touch :) Bev
Re: PF and NeuropathyDorothy on 9/09/03 at 15:13 (129308)
Aly ~ Your point is taken and because you always seem to be a nice person, I will take it. Since your and BevN's comments seem to be largely directed, indirectly, at my response to Donna, I will respond. Maybe I sounded curt to you - and to Donna - apparently, since she responded angrily - and maybe I should have been more 'tender' in directing her to the existing and extensive information about E.S.W.T. here. I could have been and maybe should have been 'sweeter'. In defense of my comment, although maybe not the tone, Phil said someone might be 'lazy' and there seemed to be truth to that because she had found her way to this site, found her way to the message board, had posted several long messages and interacted quite agilely, could see that the term 'E.S.W.T.' was highlighted in blue so she could click on it - etc etc etc - yet she asked a question that has been addressed so many times here and quite thoroughly. She was not in too much pain and disability to answer me very snippily and huffily and to describe me in ways that may or may not be true, since she knows nothing about me, other than that I suggested she assume a little responsibility - and in my opinion, her anger was out of line and in excess of what my response to her called for - and to throw a little tantrum because she was DIRECTED to information rather than having a lot of people jump-to to give it all for the 1,000l time. It's not as if I were suggesting that she walk ten miles to a library or anything; I directed her attention to the many opportunities to EASILY get the E.S.W.T. definition and information she was supposedly asking for. It was a matter of doing what she was already doing - using the existing message board and heelspurs site. In fact, I do care very deeply about people and what they are experiencing - but saying that or anything else does not mean anything - what I do lose patience with is people who want to be taken care of, BEFORE OR INSTEAD OF, even trying to take care of themselves. Donna had obviously not even tried to find E.S.W.T. because if she had, she would have been inundated with the info. She wanted it done for her and then she got angry at someone who suggested she could easily find this information right from the same seat, using the same fingers, she was using to ask others to do it for her. I guess I don't see the outlandishness of the suggestion. However, I acknowledge that I probably overreacted to her simple request because of my own biases when it would have been better and nicer to just answer her question or stay out of it altogether. By the way, I am a 'newbie' myself compared to most of the people who visit here.
Re: PF and NeuropathyAly on 9/09/03 at 15:28 (129311)
I admit that sometimes I , too, get a little annoyed at the many questions that are posed without the person having researched the site fully - but I think I did that too, so I don't comment! Probably, if I'd gotten that response from you, I would have been a little upset and said nothing; but I suspect it was really the combination of Phil's and your responses that made her react the way she did. (I'm reading minds here, so who knows!)
In any case, I don't really disagree with the sentiment, but also understand how the 2 messages together could have upset a sensitive person. I always feel for the underdog, I guess! And at times, especially when tired, I am the Queen of Airhead Questions. I wasn't going to comment on Phil's response, but thought that maybe with 2 people commenting, maybe I should jump in on her behalf...
PS I consider you one of the local 'experts', and not a newbie at all! From the sound of your posts, I'd thought you'd been around for a long time.
Re: PF and NeuropathyDorothy on 9/09/03 at 15:42 (129314)
Thank you, Aly ~ A nice response and I take your point. You made it well and I hear you. I usually espouse 'walking a mile in the other guy's shoes' and 'do unto others as you would have them do unto you' and you have reminded me of both. I hope you are having a good day - and your boyfriend, too.
Re: PF and NeuropathyAly on 9/09/03 at 15:53 (129316)
Same to you :)