Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-02-2009, 08:57 PM #1
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Default 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.
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Old 07-02-2009, 10:29 PM #2
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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!
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Old 07-03-2009, 10:27 AM #3
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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.
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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Old 07-03-2009, 11:13 AM #4
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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
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Old 07-03-2009, 11:15 AM #5
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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,,,,,,,,,,,
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Old 07-03-2009, 01:03 PM #6
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I definitely agree with Andrea, hot pack or hot bath. Any form of moist heat penetrates deeper. Hope it helps! Wishing you a pain free Holiday weekend!
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Old 07-03-2009, 03:15 PM #7
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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.
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Old 07-03-2009, 03:25 PM #8
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Quote:
Originally Posted by stressedout View Post
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.
When I was in my constant severe pain mode, before and on a diminishing scale during the SGB's, a warm bath would seem to help cut an edge. Mine is also in my arm and hand from a shoulder surgery and when I would go for a semi-long walk, much of my arm pain would lessen and stay reduced for an hour or so after completion, before rearing its ugly head.
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Old 07-03-2009, 10:16 PM #9
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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??
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Old 07-04-2009, 12:33 AM #10
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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
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