So how do you stop or prevent spread?
 

Maybe this is a stupid question but since this afternoon I am having ache and burning up higher in my arm (so far my rsd has been my hand up into my elbow). I am coming to the conclusion that it is probably spreading. My only meds is Lyrica, just on for 2 wks now at 150 mg going up to 200 on Sat. I also have a ketamine cream that I sometimes use. This is wc and the pm Dr has not given me anything for the pain except tramadol in the beginning (April)which did nothing, he says this is very mild (I won't/can't say what I have to say about it being mild). Six Stellate Ganglion nerve blocks worked for a wk and a half.. I have been denied a second opinion today by wc(my lawyer is getting on that and will give them one chance to change that decision before he lets them know we will be taking it to court). They are FINALLY allowing me to see a psychologist in a wk and a half. Is there something I can do to try to stop it or lessen the pain for now???? What about Ibuprofen?? Trying the Tramadol again? I can't get into my pcp until next Thursday but did make that appt so he knows what is going on. I need someone on my side. I am not a complainer and I tolerate alot before I will complain so maybe it's my fault (Pete, I know, I know...you've told me scream it. It's just not me) I haven't been given anything but I am just really tired, tired of the pain, tired of it never going away, tired of nobody explaining anything to me (did that on my own), tired of wc calling all the shots in my medical care.

try a heating pad, or hot baths... u can also wet a towel and heat it up in the microwave- just don't burn yourself!

Does you PM doc know that you stopped the Tramadol?

I use tramadol (instant release)for break through pain;specifically, x2 50 mg. tablets every 6 hrs. It does help me. You have to give it time to get into your system and you can't wait for the pain to increase to take the medication. Meaning, take it as prescribed.

I have a PM doc and I signed a contract with him concerning medications. PM doc's generally do not like their patients to get medications from other doctors..so be careful that you don't break the contract that you signed..if you signed one. Also, I will see my PM doc 7/7/09, and I have my questions written down as this doc is a very busy man..and it is rush/rush each visit.

I do understand your frustration with WC as my RSD/CRPS I is from 2 WC right knee injuries/surgeries. WC is brutal and causes immense stress. I have an atty. to take that stress off of me.

I am here for you.:hug:

Hello,

Sorry you having trouble. When caught early the spread of RSD can sometimes be prevented. It has a mind of it's own and acks differently in all of us. I have it full body with organ involment.
I know when WC is involved things are complicated and more stressful.
Stress is a huge aggrivator for pain so try and stay calm (I know better said then down).
Relax and take care of you!!!
Sherrie

my stress level is what makes mine spread like wildfire,,i hope your not like me,,,but its hard to just not worrry,,the w/c has to allow more than 1 dr to see you,,but they are usally on the payroll,,,,,if you have a 2nd insurance id consider that route,,,at least you can see who you want,,and if you sign up for cinergy insurance,,,you only have 6 months pre-exsisting wait peroid,,,,,,,,,,,

I definitely agree with Andrea, hot pack or hot bath. Any form of moist heat penetrates deeper. Hope it helps! :hug: Wishing you a pain free Holiday weekend!

Hi Stressedout,
I am so sorry you are going thru all this WC stuff and not allowed pain meds. It's really good you have an attorney. I think it would be a good idea for you to print out some clear shorter information about RSD for your attorney. RSDSA has some good information. I think it talks about RSD being on the McGill Pain Index Scale and being 42 on a scale of 1-50. It's right in there with amputation and terminal cancer. RSD is one of the most painful chronic pain disorders could possibly have. The more your attorney is in touch with the pain of RSD and what RSD is like, the more he will have conviction and be intolerable with WC's attitude and lack of compassion for what you are going thru.
Distraction is a huge tool we all use for pain. That could be stretching, scented candles, warm baths, comedy, music, there are portable music players that play different nature sounds. I have one that has ocean sounds, stream sounds, waterfalls, rivers, chirping birds in the woods, etc. It also is a am fm radio, cd players alarm clock. I don't travel much anymore, but when I do, it goes with me.
There is a machine that you put warm wax on your hands and feet, it hardens and then you pull it off, It feels real good for your hands and feet. Also, a Tens Unit can be ordered by your Dr. and I really helped me, It runs by battery, has 2 patches that lead to the unit, which can control the strength and frrequency of electrical impulses.
I didn't know I had RSD, but when my shoulder froze up after surgery, I was sent to a rehab Dr. who oversaw my physical therapy. I had at least 100 treatments to get the use of my shoulder back. I also felt massage therapy played a huge roll in that process, even tho I had to pay for the massage therapy. I had it just before the p.t. Physical therapy was extremely painful, but I'm grateful I followed thru with it. The RSD went to my other shoulder about a year later. p.t. and massage therapy. Maybe 50 or less for that shoulder. Then I felt a pull in hand from water skiing. One important thing besides p.t. that I had was desensitization. I had it weekly at the therapist, and dailey at home.
Got several tupperware containers and put different textures in them. Cotton balls, sand,
coffee grounds, rice, beans, Anythings of different textures. I also continue to have massage therapy. Swimming has been my lifesaver for mobility. I have fullbody RSD now 13 years and swimming has kept my feet toes, limber and kept them from curling, thus out of a wheelchair. I have one hand that is crippled. After the water skiing nerve pull,I was misdiagnosed, and the hand froze up. I finally decided to go to sports injury orthopedic group and the hand surgeon diagnosed me in 1 minute, followed up with therapy, got partial use of hand but it's like a claw. but not touch sensitive like it used to be due to the desensitization.
One thing that has helped me so much is seeing a psychiatrist once a month. The mental adjustment and grieving process thro our losses with RSD is so important. Our life isn't the same, but we can be grateful for so many things. And it takes time to come to acceptance of this change in our life. My Psych. is a neurologist and pharmacologist, so I'm not dealing with a Pain management group. I'm so grateful to have this relationship with this Dr. I see him once a month. I have not gone up in my pain med in 5 years. He has changed others meds, I take Vicodin. But he uses others meds that work on nerve pain.
WC did wrong in pushing you into nerve blocks as an only choice. There are others on this forum that got spread because of nerve blocks.They left you with only one option.
That's not right.
Is there a RSD support group in your town or a larger town? They are wonderful for in person support, Plus they are experienced in knowing the Drs. in the area with RSD experience. You can get the nearest group to you by going to RSDSA and putting in your zip code- and that will give you a name and phone number for a contact person as to time and location of the meetings.
Take care and please know we are all here to support you, loretta soft hugs.

Thank you everyone.
Dew; the Dr prescribed the Tramadol 50 mg as needed. I told him it wasn't helping and he knew I wasn't taking it because it did nothing and gave me nothing else. No contract was ever given to me.

My lawyer has handled other RSD cases and has actually given me info, he is jumping all over their denial but he said it would be faster if they are warned and then decide to approve it than wait for a court date. He is starting the paperwork though.

My kids bought me an i pod and I try to drown the pain with music. I had heat on all last night but it is still there. It is spreading up my arm into my shoulder. I know stress makes it worse and the pain/wc is stressing me out. Also, my best friend, is recovering from a brain anyeurism a few months ago, is not doing well again. We have kept each other going and I am really worried about losing her. I am really ready to lose it. I want the things I enjoyed doing back so much. I was always active showing and training my dogs, love agility. I haven't done anything in months...it's killing me.

If my pcp decides to add meds or more pt, how does that wk with ins??? I have other ins but this is wc, wouldn't my ins decline it?? What happens when I do get sent back to wk and wc is done. Who pays for the Dr's and meds??

In most cases, outside insurance companies will not pay for any medical expenses related to a wc case. They will tell you wc is paying, it's their thing, not ours.

A wc case is not completely done until you accept a settlement from them and not before. They usually try to make people go back to work regardless of capability sometimes. Just because they force you to go back does not mean they won't be paying for your care because they have to pay.

Depending on your wc laws, when a settlement is paid out, you are fully responsible after that for your own care. If you live in a state with lifetime medical benefits and that is part of the settlement, then wc has to pay for your medical expenses related to your case. In florida there is no lifetime medical, so when I settled I then had to pay for everything myself.

Hugs,

Karen

I'm so sorry to hear about everything that you are going through right now, Stressedout!:hug: I really hope that you aren't dealing with a spread and that if you are, you will get over it pretty quickly!!

Unfortunately, I don't think there is really anything that we can do to stop RSD from spreading! I have learnt that RSD will do whatever it wants, whenever it wants and theres nothing we can really do about it unfortunately.

I have RSD in my left leg and both arms. It started in my leg, then spread to my right arm after an injury and then to the left after a fall. Whenver I have suspected that the RSD is spreading, I have tried to move as much as possible. It is REALLY painful BUT it is what my doctor and PTs suggest and say can help more than anything.

I usually start off by doing really gradual exercises and then build up when I feel that I can tolerate it. I find it easier than doing too much at once as that seems to make me a lot worse! Theres a fine line between doing too little and doing too much!!

I have also been adviced by my PM Doctor to take some strong doses of Ibuprofen when I am in a flare and/or suspect a spread. I'd speak to your doctor and see what he thinks about that and what is the highest dose you can take that is safe to do so.

Have you tried anything like Espom Salt Baths? I know they can really help some people as they tend to relax your muscles a bit. They didn't help for me but as we all know, everyone is different and no two people will react the same.

I totally understand what you mean about not being the type of person to complain or scream from the rooftops that I am struggeling. I have never been like that and it takes a lot for me to compain. I guess sometimes I feel like I am putting other people out or come across as a winer ... thats where my 'Type A' personality comes in!!! Since I have had RSD though, I have slowly learnt that I can't keep 'ignoring' things and have opened up a little more ... i'm still really shy but do tell my doctors when I am struggleing. If you don't ask for help, unfortunately you sometimes don't get it.

I'm keeping you in my thoughts and prayers and if you ever need anyone to talk to, I am here for you as I DO understand what you are going through and how scary it can be!!:hug:

Take care and please keep us posted!

If you can convince a doctor to write for it, a warm pool, (exercise of any kind) but warm pools are great, as you can move through the water, (not necessarily swim), with some resistance, and get some "soft" movement, and blood circulating.
DEW her does this.

I think it's excellent, and is recomended by my doctors!
(You asked how to slow the spread, and this is the only thing that I think will do it, imho) Exercise.

Feel well!

Pete

From what I have been told and everyone is different so follow your body and treatment teams advice but it is key to keep moving. Very hard when the pain is so high. Have you been on any of the nerve meds like neurontin? Do you have tramadol? You may want to try it if you do during your flare ups. over the counter on here someone suggested Alevel liquid gel caps and I take that on an occasion. The bath is good as well and some like epsom. I think it is good you are seeing a psych. I waited 2 plus years to do that and I am so gald I finally went back. It does not take the physical pain away but helps me be more rational and with anxiety which I would think helps pain.Hang in there

Dubious mentioned warm bath and then a walk, I have found that gentle exercise helps greatly. After a suggestion from my orthopedic surgeon (who first suspected I had CRPS) I have been doing water therapy. For basically the same as the $20 per visit insurance co-pay, I go to the YMCA and do their water rehabilitation. I have a rehab specialist who has gone to training to do water rehab. She works for the YMCA after approaching her wish my diagnosis she did research as to what would be best for me. She is very knowledgeable on gentle exercises, you get the great weight bearing exercise in a 85 deg pool. I highly recommend it especially if you miss a lot of physical movement/exercise. Hope this helps!! Best wishes for a pain free day! :hug:

i know it was mention about the epson salt i use this alot. i have full body rsd .. and it helps. for me i have to get the water as hot as i can stand. and sit in it as long as possible. for the arm i would try to do the same thing. also water therapy is good idea i do it also at the Y and it does help.

the spreading. there really isnt anything that i have found to stop it.. IMO .. i know some say blocks etc.. well it doesnt do it for me. i would fight for pain meds to control the pain. because here is the problem with the RSD once you get into that horrible pain and you have no back up plans for it.. its very hard to get it under control. i went a couple years with out any meds period. and i know how tuff this can be.. i have tried it all ..

try the bath .. it may help..

carrie

If there is any "truth" I have learned, it is that there are no two cases of RSD the same, and each person responds differently to treatment plans.

Over the years, I have tried most of the pain relievers out there at one time or another. I have been on ibuprofen, Tramadol, Percocet, methadone, oxycodone - so many I would need to get out my records to name them all. Sometimes they will work for a while and then stop working and I need to switch.

The same thing is true for mechanical relief like warm baths, heating pads, etc. Some days they work, other days they do nothing.

I do not say this to be discouraging, only to tell you to be patient and keep trying. All of the people who have responded have excellent suggestions of non-prescription remedies. I also personally like a heating pad on a medium-low setting. Give these suggestions a try and see what they do. Just don't be alarmed if you don't get the pain relief others have. Remember that this is normal.

Mike

Stressedout,

So sorry you are going through this. It took my doctors 16 months to figure out what is wrong with me, so my RSD was pretty set in by the time they started treating me. Mine did not spread UNTIL my SG blocks. After my second block, it spread from my ankle up my leg and into my knee. My doctor said that some PM docs will do tons of blocks, but the truth is that if the pain returns after the second or third block, the blocks are NOT working. I would avoid doing any more of them if you can.

My Tramadol doesn't do a whole lot for me, but my doc says it has mild anti-depressant properties, so if you stay on it, you might at least be able to avoid some of the stress triggers- mine gets really bad when I am stressd out too. If you don't have the choice to get other medications until you can get a second opinion, I would at least stay with the Tramadol and see if it helps after it has been in your system for a while.

I completely understand your frustration with the pain. I feel like screaming soemtimes because nothing stops the pain (I'm on Tramadol, Neurontin, Cymbalta,and Hydrocodone 10/325). The best thing you can do is keep living your life the best that you can so this disease doesn't take over. Good luck. I really hope you are able to get some relief soon.

Hi Stressed Out,

I was hurt on the job 32 months ago. WC was great until I was diagnosed with RSD. The preliminary diagnosis was made about a year ago.

Whenever WC denies something (which is just about all the time lately), I use my personal insurance to pay for it. Meds, PT, doctors, etc. Anything I need. And then my lawyer gets the bills paid by WC. So far that system has worked for me. I always make sure that I get what I need to try to control my pain because up until a few weeks ago I was still working FT. And I see my pcp when I need things done (doc referrals, MRI's, scrips ect) and he helps me out quite a bit. My PT is awesome, he has also helped me. I see him a few times a week and for me it's been really helpful to have someone that can answer my questions about the parts of my body that really hurt and the different ways to get them to feel better. If you don't have a good PT yet I would highly recommend that you try to find one (maybe get a referral for one that knows about RSD from a good pain doc). My PT ordered me a TENS unit and helped me learn how to use it.

My lawyer told me that my case will never "close." In other words, I will never receive a settlement from WC for my injury; instead, they will be responsible for paying all my medical bills related to my injury and disability pay (as needed, when I'm not working, like now) for the rest of my life. The disability pay part is not that great - the rate is low compared to what I make when I work and it does not contemplate things like benefits. I live in Rhode Island. It's tax free, though.

You may want to make a list to go over with your attorney. He or she should be making you feel LESS stressed out. In RI they get paid by WC, not by the victim. It may be the same in your state.

I hope this reply helps you out. BYW - my pain meds are written by my pcp. I've never signed a contract, but a lot of patients do, it's up to the doc. I take a lot of percocet. But until I started taking methadone as well my pain wasn't always well controlled, and I was miserable. If you feel your pain is really bad and you need help, get a referral to a good pain specialist from your pcp. Try to use your WC to pay for it. If you are denied, then you have a right to use your personal insurance to get the help you need. Let the rest fall into place later. That is what my attorney has told me, and after one year I have yet to get into trouble using that system. Just make sure you are denied first.

If you have any other questions, please feel free to PM me. I'd be happy to help you.

Sandy

Hi,
I just settled with w/c in the state of georgia - we do not have a life time insurance but with my case, with the settlement, w/c had to do a medicare set aside (I was awarded ss disability which makes your case stronger) as ss disability said, this is a w/c injury and w/c needs to provide care for me for the next 23 yrs so a set aside account was set up w/an account that pays til the fund runs out then medicare with pay - if you get awared ss disability then you are in a position to receive medicare set aside - I am assuming this is the way it is in all states as ss disability is federal - I hope this helps - also, the # of years that pay depends on your age and the # of years some calculated chart says you have to live depending on how healthy you are -

pain meds
 

Sorry you are having such a difficult time; I am allergic to most oral pain meds, and I do use lg doses of ibuprofen. Don't overdo, keep in touch with your doctor, and drink plenty of water. Ibuprofen can damage your kidneys if you take too much and it can cause your stomach to bleed, so be aware and be careful. I take three or four at a time; it usually works best if I take it right before bed. Try propping your painful limb on something soft; chenille throw, super soft pillow, etc. Not sure if this helps, but good luck to you. Suz

I think to adequately stop it from spreading you have to go into remission from the treatments you've been getting, the treatments that actually work for you.

Even then, years down the line, it can suddenly resurface, just like that.

Prevent spead....
 

i know what ur dealing w/w.c. - so am i! for a yr and half now. they're paying my salary still, all meds, all dr's visits, OT.... BUT i do have much stress (w/them) which sends me 2 the moon! don't know how much longer i can go w/o an attorney! thinking bout all of u!