[cath1]

So, I'm thinking I belong to way too many forums on this site, first the spinal forum (ACDF C5,C6,C7), then the chronic pain for neuropathy, just had my six week post op for my second surgery on my ulnar nerve (elbow to hand), and today I was listing off my symptoms to my neurosurgeon, trying to explain "I'm just not getting better" and he diagnoses me with RSD.

So here I am again looking for more information on the latest diagnosis.

I know very little about RSD, but I did look up a little and the symptoms match my burning pain exactly.

My question to any out there who have been dealing with this, besides the obvious pain meds and nerve meds, which I am on, what have you found that helps reduce the pain and inflammation? I use ice packs constantly, and they do give some relief, what else works?

What supplements are helpful? Diet? Tips or dos and don'ts?

Any information would be helpful.

thank you!
Cathie

[terralyn]

Welcome to the forum.. sorry your at this forum too. Just a heads up with ice. For rsd its a big no no generally. It may seem you are getting some relief but it is known to spread rsd or increase nerve damage.
Check out. Rsdrx.com. lots of great info there!

[betsykk]

I would try ketamine infusions as soon as i could. Ketamine was the only thing that gave my daughter relief.

[catra121]

I am so sorry to hear about all that you are suffering from. Having multiple conditions (especially with RSD as one of them) has got to be a lot to deal with. RSD is a very strange condition and many things that work for other conditions either don't help or make the RSD worse (as Terralyn pointed out with the ice).

Because RSD is such a bizarre condition and affects everyone differently in many ways, what helps one person may not help another. Here are the things that I have used to help control my RSD:

1. Physical Therapy - RSD is a use it or lose it condition. If you protect or guard the limb (using braces or just from disuse) your pain will actually get worse. I know it hurts to move but by goodness you HAVE to do it because if you don't it will continue to get worse.

2. TENS Unit - I use this to help with the pain. I surround the area that hurts with the electrodes (easy for my ankle but harder for areas where the pain is more wide spread unless I am having a flare in a particular spot). I wear mine on my ankle throughout the day and turn it on when I need to.

3. Hot baths with Epsom Salts - I take these twice a day to help with the pain and swelling.

4. Ultrasound Heat Therapy - I do this twice a day on my RSD areas following the baths. It seems to extend the relief I get from the bath and other treatments.

5. Lidoderm Patches - I typically use these if I am in a flare or if I will be doing an activity that I know is likely to cause a flare. They work best if you do not wear them in the same spot every day but rather only once or twice a week.

6. Four F's Diet - I follow this to help with the inflammation. I don't take any anti-inflammatory meds so I do what I can to control it with my diet.

7. Desensitization - I could not even tolerate clothing touching my skin for a long time until I made myself do this. I still have sensitivity but it is MUCH better than it was in the beginning. Air movements and cold are BIG triggers for my RSD so it was important that I be able to wear clothing to protect those areas.

8. Heating Pads - I have several different kinds of heating pads and a space heater that I use to help with the pain. I have come to really like the stick on heating patches and use them mostly to deal with flares when the pain is really bad. I buy the cheap generic ones that you can buy in the first aid section of the pharmacy.

9. tDCS - This has been HUGE for me the past few months in reducing my pain and sensitivity in my hands and arms. I am hoping that with continued treatments I will see improvements in more areas since the hands and arms were the last areas that the RSD spread to.

It's also very important to identify what triggers your RSD to flare up and try to avoid those things as much as possible. I have found it helpful to keep a journal every day of the pain, how much sleep I get, symptoms, etc so that I can see how things are progressing and identify triggers as well as improvements (sometimes these are subtle day to day but over the course of a week or month can be significant).

[painman2009]

hey sweetie. I understand the multiple forum issue.. me too lol.. what i can say just like teralyn I would suggest caution with the ice. in the beginning for me ice helped a little but now anything cold hurts like h---. it is generally public enemy number one . also try not to get to stressed out..(easy right??) but stress can add to pain, flare ups, and worsening of situation. and research everything a dr mentions. soooo important. ..keep inn mind that RSD is different for each person as is symptoms ,there is no criteria, check list of symptoms so don't worry about that.. and keep up the conversations here. here to gather we can make a difference with each other.. ohh and the quicker your RSD is addressed the better the results. it is unfortunate that you have this beast but welcome to the forum bets of wishes and soft hugs

[LIT LOVE]

I found that prior to having RSD I could tolerate ice, after though, it felt like torture. This might be because the dysfunction of my sympathetic system included temperature disturbance very early.

While you might not be experiencing pain or problems from ice yet, you should not use ice unless it is confirmed that you do not have RSD. The other big concern is if you are in anyway immobilizing any part of your body--no braces, or even guarding. Move the limb or body parts that become effected as often and gently as possible--this is why aqua therapy for RSD is often prescribed, since it's easier to move with less impact.

Not everyone is a fan of sympathetic blocks, but this is what is claimed as the best chance for remission, if done early and correctly. Personally, I had stellate ganglion blocks done by two different docs, and they were vastly different experiences. The meds given and the technique used can make a BIG difference.

If burning pain is your only symptom, I'd get a 2nd opinion by an experienced RSD doc asap.

You might also not be noticing some symptoms. I started shaving my arms without realizing it was due to the weird hair growth. It's more obvious when my arms are wet, but the pattern follows exactly where my worst pain is on the one arm, with the hair longer and courser on both. Those that have drastic color changes and swelling are easier to diagnose. Pain can actually be MORE of a factor in those that don't have those sympathetic issues.

Dr. Hooshmand has been retired for many years, but I'm still a fan of his website. There's a ton of info in the puzzles, and It's worth checking out IMO.

Good luck.

[cath1]

Originally Posted by terralyn

Welcome to the forum.. sorry your at this forum too. Just a heads up with ice. For rsd its a big no no generally. It may seem you are getting some relief but it is known to spread rsd or increase nerve damage.
Check out. Rsdrx.com. lots of great info there!

I didn't realize that about the ice, I've been using it so much to control swelling and pain.... I guess I still have lots to learn.

Appreciate all the info!

[cath1]

Originally Posted by catra121

I am so sorry to hear about all that you are suffering from. Having multiple conditions (especially with RSD as one of them) has got to be a lot to deal with. RSD is a very strange condition and many things that work for other conditions either don't help or make the RSD worse (as Terralyn pointed out with the ice).

Because RSD is such a bizarre condition and affects everyone differently in many ways, what helps one person may not help another. Here are the things that I have used to help control my RSD:

1. Physical Therapy - RSD is a use it or lose it condition. If you protect or guard the limb (using braces or just from disuse) your pain will actually get worse. I know it hurts to move but by goodness you HAVE to do it because if you don't it will continue to get worse.

2. TENS Unit - I use this to help with the pain. I surround the area that hurts with the electrodes (easy for my ankle but harder for areas where the pain is more wide spread unless I am having a flare in a particular spot). I wear mine on my ankle throughout the day and turn it on when I need to.

3. Hot baths with Epsom Salts - I take these twice a day to help with the pain and swelling.

4. Ultrasound Heat Therapy - I do this twice a day on my RSD areas following the baths. It seems to extend the relief I get from the bath and other treatments.

5. Lidoderm Patches - I typically use these if I am in a flare or if I will be doing an activity that I know is likely to cause a flare. They work best if you do not wear them in the same spot every day but rather only once or twice a week.

6. Four F's Diet - I follow this to help with the inflammation. I don't take any anti-inflammatory meds so I do what I can to control it with my diet.

7. Desensitization - I could not even tolerate clothing touching my skin for a long time until I made myself do this. I still have sensitivity but it is MUCH better than it was in the beginning. Air movements and cold are BIG triggers for my RSD so it was important that I be able to wear clothing to protect those areas.

8. Heating Pads - I have several different kinds of heating pads and a space heater that I use to help with the pain. I have come to really like the stick on heating patches and use them mostly to deal with flares when the pain is really bad. I buy the cheap generic ones that you can buy in the first aid section of the pharmacy.

9. tDCS - This has been HUGE for me the past few months in reducing my pain and sensitivity in my hands and arms. I am hoping that with continued treatments I will see improvements in more areas since the hands and arms were the last areas that the RSD spread to.

It's also very important to identify what triggers your RSD to flare up and try to avoid those things as much as possible. I have found it helpful to keep a journal every day of the pain, how much sleep I get, symptoms, etc so that I can see how things are progressing and identify triggers as well as improvements (sometimes these are subtle day to day but over the course of a week or month can be significant).

All this is so helpful, thank you.... I am in physio, need to discuss tomorrow after my new diagnosis. And I have a tens that I should be using more, I will try that too.

I'm not familiar with the four f's diet? Can you elaborate a bit?

Cathie

[cath1]

Originally Posted by LIT LOVE

I found that prior to having RSD I could tolerate ice, after though, it felt like torture. This might be because the dysfunction of my sympathetic system included temperature disturbance very early.

While you might not be experiencing pain or problems from ice yet, you should not use ice unless it is confirmed that you do not have RSD. The other big concern is if you are in anyway immobilizing any part of your body--no braces, or even guarding. Move the limb or body parts that become effected as often and gently as possible--this is why aqua therapy for RSD is often prescribed, since it's easier to move with less impact.

Not everyone is a fan of sympathetic blocks, but this is what is claimed as the best chance for remission, if done early and correctly. Personally, I had stellate ganglion blocks done by two different docs, and they were vastly different experiences. The meds given and the technique used can make a BIG difference.

If burning pain is your only symptom, I'd get a 2nd opinion by an experienced RSD doc asap.

You might also not be noticing some symptoms. I started shaving my arms without realizing it was due to the weird hair growth. It's more obvious when my arms are wet, but the pattern follows exactly where my worst pain is on the one arm, with the hair longer and courser on both. Those that have drastic color changes and swelling are easier to diagnose. Pain can actually be MORE of a factor in those that don't have those sympathetic issues.

Dr. Hooshmand has been retired for many years, but I'm still a fan of his website. There's a ton of info in the puzzles, and It's worth checking out IMO.

Good luck.

So much to learn and understand. I have more symptoms then just burning pain unfortunately, sweating (for no reason when even in air conditioned room), huge color changes in my affected hand, lots of bluish purple and blotchiness, then it swells up, sometimes it lasts for days, sometimes a couple hours. So frustrating. Originally they assumed my neck and shoulder pain was muscle spasms from my neck fusion, but it's been over a year since my fusion, and it doesn't feel like muscle aches, it's burning nerve pain. Starts at my neck, down my shoulders, traps and into my right arm and hand. Two surgeries later, with pinched nerves being released, they think that RSD has resulted from all the injury, surgery and nerve trauma.

I've been immobilized in the affected hand for the last six weeks because of the surgery, but now that I have the okay to move and use it I definately will. I like the idea of the aqua therapy, with a neck fusion that is best for me all around.

I will ease up on the ice for a while and see if that helps, sometimes I find the heating pad helps the shoulders and neck, but it makes my hand swell more, it's like the nerves in my body have all gone haywire.

Hoping my physiotherapist can offer some advice and help when I see him tomorrow, he's been great with everything I've been through so far, it's been a rough couple of years!

Thanks again!
Cathie

[LIT LOVE]

I know that was for Catra, but...

4 F's diet is Hooshmand's. http://www.rsdrx.com/four_f%27s_diet.htm
Some of his info is outdated, diet soda being allowed is the most glaring example.

I think marksdailyapple.com has ideas that complement well with the 4 F's. The idea is to eat whole foods and limit carbs, and does not require calorie counting! Healthy oils, protein, veggies, fruit-in that order, whereas the traditional American food pyramid is reversed.