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How to Deal with Pain

Posted by Patricia H. on 4/09/04 at 03:19 (148614)

Hello,
I have just been diagnosed with TTS after 18 months of severe pain (I saw a dozen different docs first). I had my first steroid injection today in one of my feet--both are affected. I can't really tell if it's working or not. The doctor has suggested that it's likely I'll need surgery. My question, though, is how do you all manage the pain? My doctor has had me on Vicodin for about seven months. It's not particularly effective, though it takes the edge off. I definitely don't get 'high' from it. Question number two is: Immediately after the surgery, will I need a stronger pain medication? You've probably guessed I'm a wimp when it comes to pain. Thanks for any comments or advice.
Patricia

Re: How to Deal with Pain

Dr. Z on 4/09/04 at 19:08 (148628)

How you tried neurotonin for buring pain?. There are other stronger pain medicatons availabld post surgery such as dilaudid.

Re: How to Deal with Pain

Patricia H. on 4/09/04 at 19:46 (148631)

Dr. Z,

Thank you for replying. Yes, I was on Neurontin for about three months recently with no effect. I am also taking Celebrex, but I need the Vicodin for the pain. I'm doing contrast soaks (ice and heat). I was wondering if there are other effective pain medicines out there. The pain really is sometimes unbearable. I wonder if other TTS sufferers experience this same degree of pain (or if I'm just a super-wimp!). I assume from your post that the doctor will give me adequate pain relief post-surgery with the knowledge that I am taking Vicodin. In other words, something stronger. Any other suggestions for pain relief, chemical or otherwise?

Patricia

Re: How to Deal with Pain

Dr. Z on 4/10/04 at 09:33 (148639)

Hi
You are going to have to try other types of medications such are percocet 10mgs , viocoprofen, Darvocet, Ultram (some patients have told me this work when viocdan does'n't.
You are going to have to dicuss this with your doctor BEFORE the surgery. There are drugs such as dilaudid that are stronger There are types of anesthetic pumps that can be placed into the surgical site for pain relief.
I like to use dilaudid 4 mgs with 50 mgs of visteril every six hours in combination. Ifyou still have pain post surgery add another visteril first if still in pain then add another dilaudid. This is a very strong cocktail and your doctor MUST be familiar with this drug and its side effects

Re: How to Deal with Pain

Mike on 4/10/04 at 13:16 (148661)

Patricia,
You are not a wimp by any means. Any amount of pain just plain sucks - especially when chronic as with TTS. As you know it can pretty much take your life away from you.

I, like you had what I call 'nerve' pain for about 18 months. I tried everything mentioned here short of the injections and finaly decided to have the surgery. I had my left foot done. As soon as I woke up from surgery, there was NO pain! In either foot! A few hours later I started to feel some pain from the incision but it was nothing compared to the 'nerve' pain I had before and was a very welcome change. Vicodin took care of the surgery pain and I was pain free for about a month and a half. Then the nerve pain started to return which was scary at first but I was assured by my surgeon that this was normal and it could take several months for it to go away. Still, its only about 70% of what it was before.

Its been about 2 1/2 months since surgery and I have re-tried Vicodin, Ultracet, Percocet etc without any luck although, overall, the pain seems to be diminishing slowly and I can now tell a big difference in pain between my left and right feet. (left is much better) Im optomistic that the pain will completely go away and I can then have the other side done. According to my wife, I am back to my old self which makes the whole thing worth it.

Sorry if this got off track a bit but wanted to make the point that for me, the pain from surgery was easily delt with but nothing helped my nerve pain - other than surgery. Everyone is different and some things work for some people. I guess you just have to keep trying. Its a hard, personal decision weather or not to go through the surgery but dont let the anticipated pain of surgery itself scare you away.

Here is a list of things I had tried before surgery that didnt work for me but have for others:
Neurontin, Topamax, Ultracet, Percocet, Vicodin, Mexitil, Alpha Lioic Acid, Pure Borage Oil, B-Complex, Benfotiamine, Methylcobalamin, Amitriptyline, Ibuprophen, Celebrex, quit smoking, pain patches, meditation, capsaicin cream, BioFreeze, orthotics, compression stockings, massage, cold packs, RebuilderMedical.

Good luck!

Re: Good list - can it get posted?

Lara on 4/10/04 at 17:52 (148668)

Mike - that's a great list. We should have it posted somewhere so when new people come on and ask about treatments before surgery, we can refer them. It keeps coming up over and over, and it's good it does as each conversation brings a little different slant and information. But perhaps we could get it posted somewhere and then continue the conversation from there so that some people don't miss out on some of the options depending on who engages in the thread. They could be in categories: Rx drugs; OTC drugs, non-invasive treatments, minimally invasive treatments. . .

Re: How to Deal with Pain

DonnaO on 4/10/04 at 17:54 (148669)

Hi patricia,
I also had TTS in both feet. I tried a cortisone injection, creams, ice (my doctor told me not to use heat), taying off my feet when I could, and some medications to help decrease pain. After months of this and not seeing any improvement, my doctor and I decided surgery was the way to go.
I had surgery done on 2/13/04. Even though the recovery period is long and a process, I found the post op pain I experienced was nothing compared to the TTS pain I felt in the months prior to surgery. He put me on one pain med to take as needed and Advil to take every 6 hours for swelling. I usually only had to take 2 doses of the pain med a day for the first week +1/2 and then only one in a great while after that. I was happy about that because I don't like taking pain meds because of the side effects.
You are certainly not a whimp but rather brave for having put up with the pain for so long. I am 8 weeks post op and doing well. I started wearing tennis shoes last week. still have a certain degree of numbness and swelling in both feet that gets better all the time and my doc says it is normal. I feel that the recovery is going well so far.
Surgery is definitely a personal decision. You have to do what you feel is right for you. For me, surgery was the right choice because none of the other treatments were working for me. If I had it to do over again, I would do the same thing.
If you do have the surgery, here are some tips to help you through the recovery period:

1. A few days before, gather some of your favorite CD's, DVD/Videos, reading material, etc. and put them in an area of your home that you will be spending the most time in.

2. Listen to your doctor about the recovery period/Ask questions about your progress-doctors vary on weight bearing immediately after surgery v's not putting any weight on your foot for several weeks. My doctor had me putting weight on my feet 24 hrs post op but everyone is different. If you have any doubts or questions during the recovery, do not hesitate to ask your doctor. Remember, the post op recovery is probably the key to a successful surgery.

3. Keep your spirits up (see #1- During the different stages of your recovery when your doctor has you increase activity (i.e. wearing shoes, walking with your normal gait), take it slow. Don't get discouraged if you have a setback or two. You will get through it. As previous posters have said, it sometimes takes several months to a year to see significant results.

4. Patience, Patience, Patience- I found this step to be the biggest challenge for me because I couldn't wait to get up and start back with a certain degree of activity.

Patricia, I wish you the best of luck with whatever you decide. These boards are supportive because the help us know there are many others who are experiencing the same thing. Take care.
DonnaO

Re: How to Deal with Pain

Patricia H. on 4/10/04 at 18:12 (148670)

I want to thank you all so much for your detailed and encouraging responses. I really did feel very alone. I saw so many doctors who didn't know what was wrong with me (neurologists, podiatrists, orthopedists). I guess I just got lucky finally to find a doctor that immediately diagnosed me. He said it was obvious (after 18 months!) So, I really feel like I'm not alone now, and when I have the surgery, which I believe I will go ahead with, I will know where to find some friends.

Yes, I have tried almost all of those treatments. I also gave up drinking and lost 70 pounds, but I can't seem to quit the cigs, which I know is idiotic and self-defeating. In a crazy way, the TTS (now that I know I don't have a scary, life-threatening disease) has helped me lead a healthier lifestyle. I just can't walk!

I'm planning on setting a nest up for myself post surgery. I work at home on the computer (I'm an editor and writer), so I have no employment issues. I can work in bed. My family is very supportive. My main concern, again, is the pain medication. I believe I take too much already, and I'm starting to become concerned, yet I can't live with the pain.

Thanks again, everyone. I'm sure I'll be back in touch. The shot last Thursday didn't do much for me.

Best,
Patricia

Re: How to Deal with Pain

marie on 4/10/04 at 20:48 (148675)

I was dx with tts in 2002. TTS symptoms began in 2000. My first symptom was tightness in my knees. I thought it may be arthritis so I ignored it. In the summer of 2001 my feet began to bother me. In August I had a major flare up that literally knocked me off my feet. Assuming it was arthritis I thought I better consult my GP. He prescribed some arthritic medications but there was no improvement.

I was referred to a Podiatrist. He is a wonderful doctor. His concern was that some of my symptoms were not typical of tts so I went through a battery of additional tests before they began to treat me. Recovering from tts is like having another full time job.

I went from a wheel chair and scooter to walking two miles in the Multiple Sclerosis walk. A cause dear to my heart.
My goal this year is to walk six miles. I may not break a record for speed but I know I can do this. This year it's on May 15th.

This is what has helped me.

Physical Therapy

Ice (frozen peas work well) for swelling. About 5-10 minutes per ankle. Two-three times a day as needed.

Light stretches......very light.

Medications: Neurontin 300 mg 3x daily, 50 mg elavil

Vitamins that I sware by: MSM, Glucosamine, Vitamin C, Magnesium. Some have had success with vitamin B6 and 12.

Compression socks and mens support socks.

Birkenstock shoes. I am especially fond of Arizona and other soft bed styles.

Progesterone cream on my ankles and knees twice daily.

My hubby massages my meta tarsals, ankles, calves and thighs. At first this was done twice a day. Now I only ask for a massage once or twice a week. NEVER massage the tarsal area vigorously. My PT and I found that out the hard way. It was a major setback.

Some have had success with Ibuprofin creams.

Light non weight bearing exercises.

Distraction from pain. My brother, who has MS, suggested emmersing myself in activities or projects that would take my mind off my feet. It helped me maintain my sanity.
Creating this site has been one of my projects.

Everyone is different. What has helped me may not help you. Please feel free to add what has helped you.

best wishes marie

Re: How to Deal with Pain

Carrie B. on 4/11/04 at 12:55 (148692)

Patricia,
Great job on losing the 70 pounds! I lost 50 pounds hoping it would help. It really didn't. My doctor told me that since TTS deals with nerves that it would be more important for me to quit smoking than to lose weight. He said that smoking inhibits the nerve healing process. As I had been smoking almost 20 years, I had tried everything with no success. This time I tried Quest Cigarettes. You go down in three phases. I started with phase 2 because the first phase is Light Cigarettes which I already smoked. Phase 1 is Low Nicotine Phase 2 is Extra Low Nicotine and Phase 3 is Nicotine Free. On their web site, http://www.questcigs.com , they have this 'Warning: This product is NOT intended for use in quitting smoking. Quest is for smokers seeking to reduce nicotine exposure only.' I think that is odd because I know at least 15 people who used this to quit smoking. I have not smoked for 6 months. My doctor told me that the nicotine was the addictive part and smoking was habit after the nicotine got out of your system. I smoked the Nicotine Free cigs for 2 months and then quit. I had NO withdrawal symptoms. I have gained 20 of my 50 pounds back, but considering that I am post surgery and am not walking my normal 5 miles a day at work. I know that once I get back into doing something, anything, that weight will come off again but this time I won't have a cigarette. My doctor told me that smokers generally weigh less because they don't taste foods as well and they take deeper breaths many times a day. He says non-smokers have much better results post-op.

Re: How to Deal with Pain

Elaine T on 4/12/04 at 18:52 (148782)

The steroid injections into the nerve helped me tremendously. I had two of them, and stayed pain free for years. Of course, the TTS didn't go away, but at least I was able to live without that horrible pain.

Re: How to Deal with Pain To Dr Z

Bud P on 4/13/04 at 22:30 (148836)

Dr Z,
It's so comforting to know that some doctors have an idea of how much pain is involved with PF. You may have read some of my posts in the last couple years.

I've been in pain management for my knees and shoulder for the last 3 yrs. A total of 6 surgeries. The pain Dr's and clinic I go to have been able to keep me sane after finally arriving to the right combination of drugs and therapy. Oxycontin in the AM. and PM. and Actiq for breakthrough pain. This will probably go on until my knees are replaced. However,as much pain meds. as I take,it never helped my PF at all.The doctors that I see really don't have any idea of how much pain is involved with PF.I might add that these Dr.s are very good ,they just don't see many PF patients. Go figure. I did get some relief from the PF with the Actiq,but it's only used for breakthrough pain as far as I know.

Sorry about going on and on ,but until I had the EPF surgery. I couldn't really get any relief . I'm glad to see that you have found an effective way to treat the pain . Bud

Re: How to Deal with Pain To Dr Z

Will B on 4/14/04 at 00:47 (148841)

Bud, in glad the PF surgery worked fo you. I know about the pain. It's terrible to the point no-one can understand unless they actually experience it. It affects your mood, your relationships, You job. You money. Everything. I have been there. It tears up your life, until you get mad about it, and smart about it, and get a good doctor that can actualy help you, and some physical therapy and proper shoes and inserts. Lets pu it this say. I renently helped a Marine who was discharged over PF. He works ou at the same club I do. He was a Veterna and was in Marin Force Recon. Tough dude, but not tough enough to deal with full on PF. It brought him to his knees and shortened his Military career. He's ok now with good help from an Orthopedic doctor and proper therapy, but he, like (I) has pain still. It can break down the strongest person. What is interesting is dealing with PF at work. At my previous job, many whom had had some PF 'type' symptoms told me I would get over it quickly as they did. There are some people who have slight symptoms of PF but never really get what you and I have/had - and as such don't understand the pain and disability it can bring. Hang in there- and again .. Im glad you found something that worked for you.

Re: How to Deal with Pain /To Will

Bud P on 4/14/04 at 16:19 (148890)

Will,

It does blow my mind how people think about PF. IT's not that bad,you'll get over it,I had it and it went away. What they don't realize is ,that if you don't address it right away and you continue to workout and keep thinking it'll stop,it becomes chronic. That's what happened to me. Before I had the PF I was a UPS driver and at that job there are always aches and pains,especially in your feet and knees. So when I was walking on a treadmill with an incline I just thought it was a normal workout pain. To make things worse I just built a new home and the entire house is tile.All of this spelled disaster.It took this site and others for me to put it all together. My othopedic doc is one of the best in Fl.,but it took my Podiatrist to get me better. Like you said,orthotics,night splints,etc.Eventually after thousands of $$$$$ I had the EPF.I really can't believe how good I feel.I have no first step heel pain at all now.Bud