Hi everyone,

I'm so glad I found this forum. I apologize for my lengthy post, but I'm desperate for help. I'm looking for advice and the doctors aren't being very helpful. My background is I have a history of RSD and severe Psoriatic Arthritis.

I had my first bout of RSD about 10 years ago in my left foot. It lasted a little over a year. I had two sympathetic nerve blocks and the second block seemed to put the RSD into remission.

A month ago, pain started in my left shoulder blade and upper arm coupled with weakness. I initially dismissed it as a psoriatic arthritis flare. Over the next two weeks, the pain quickly spread and now extends from my shoulder blade through my wrist. My left hand seems to be spared. It started out as a severe throbbing ache. Any movement of the arm greatly increased the pain. I tried to immobilize the arm into a sling, but any slight movement of my trunk, moves the arm, and causes incredible pain. When the pain gets severe, the arm (especially the forearm and wrist) turns ice cold and pale.

I went to my rheumatologist and he thought that it wasn't PsA related. He noted that my entire arm was swollen and there was a slight temperature difference. He prescribed a large blast of prednisone (60 mg for 3 days; 40 for 3 days, etc.) and pain killers. I took 4 days off and started to feel slightly better. I went back to work and in 30 minutes (with my arm in a sling), the pain became unbearable. I have a very good pain tolerance due to the psoriatic arthritis, so believe me when I say it was intense.

The doctor told me to take 10 days off work. I'm supposed to return on Monday, May 21st.

Despite being bedridden and taking medication, my arm is getting worse very quickly. In addition to the severe aches and shooting pains, I'm having constant, intense burning. It feels like someone is rubbing rough cloth over the worst sunburn of my life. If anything touches my arm, the burning and pain increase. Even water and air conditioning elicit severe pain. I'm also experiencing prickling, like someone poking hot needles into my arm. My hand and arm are very shaky. They shake at rest, and if I try to pick up something light like a pen, my whole arm wobbles so much that I inevitably drop it.

The pain is now constant and unrelenting. Vicodin barely touches the pain.

There is NO numbness or traditional pins and needles. My fingers have no pain. My neck has no pain. I've not had any significant injury, or any injury. I do have psoriatic arthritis though, which is like rheumatoid.

My concern is that I'm supposed to go back to work next Monday and I have no idea how I can possibly do this. I work in a library and my primary job is checking in and out books. That requires arm and trunk movement. Even if I put my arm in a sling and use my good arm, it still causes pain in my left arm. This is pain that I just can't handle while working. I can't take pain killers at work. Also, I can't drive with my arm like this or drive while taking pain killers.

I called my doctor again and he definitely thinks it's neurological; some type of neuropathy or MS. I had a brief MS scare a few years ago, but I had a head and neck MRI in February and there's no lesions (at least new ones). In February, the neck MRI didn't show any nerve impingement or disc herniation.

The doc is going to consult with the neurologist that ordered my MRI in February. He thinks there's a possibility that it's either MS related (though I have no diagnosis or lesions), neuropathy or the return of the RSD.

My question is: how do I make the doctor understand that I can't work like this? With my job, I have the option of going on short term disability for up to 6 months while getting 65% of my pay. However, I need a doctor's note.

The doctor still hasn't decided exactly what is going on, whether it's RSD or neuropathy, and I can't see them deciding or effectively treating me in a week, so I can return to my job. I feel like the doctor just doesn't understand how much pain I'm in.

How do I get the doctor to write me a note, so I can go on the short term disability until we get this problem under control? How do I make him understand that I can't function like this?

Does this sound like RSD or neuropathy?

Thanks so much for taking the time to read this.

I just want to day sorry you are going through this.. you sound like you are at your wits end! I don't have advice about disability but just thought I should mention that if it is rsd you really shouldn't immobilize your arm. Doing do can make it worse. I know there are days I would like to get in a wheelchair and not have to walk on my foot! Unfortunately its important with rsd to keep moving as much as possible. Just speaking from my experience and what ive read. Hope you find some relief and answers soon.

oh i understand so much. first does the doc remember or know about your previous rsd? do the pain killers really weird u out so u cant drive? also go back to doc looks like u need more time!

I am very very sorry to hear what you are going through. From your descriptions it does sound like there is a strong possibility it is RSD which I am very sorry to hear.

In terms of getting the doctor to write you out of work...this can be tricky. Does your employer have short term disability paperwork? If so I would get a copy of that and make an appointment with your doctor to follow up on your concerns and to go over the short term disability paperwork. It sometimes help if the doctor is hesitent to bring a job description with you and explain to him WHY you can't do your job in your condition. If your employer doesn't have any specific paperwork or a job description written up then I would take the time to write/type up (or have someone else do it for you) what your job involves and explain to the doctor why you can't do these things and need to be off work until you get all this straightened out.

Also, I want to express my concern about the immobilization of your arm. Immobilization is BAD NEWS for RSD. THe more you immobilize and protect the limb, the worse the pain gets. You need to try and move your arm as much as possible...even if it's just a little. I know the pain will be excruciating but it is absolutely essential if you want to keep this from getting worse. I know when I first got RSD and they were trying to figure out what was wrong they had me immobilizing and initially I thought that made things better...but over time they just got worse and worse and worse. No immobilizing and no ice. Physical therapy was essential to get me functioning again and to stop the downward spiral where every day it was worse than the day before and I had more symptoms. And, from your story, it sounds like this is what is happening to you because it has gotten worse over time as you've had it immobilized.

I am very sorry to hear what you are going through. You definitely need to get this addressed as soon as possible and treat it aggressively. A neurologist and a pain management doctor are probably the ones you want to see as soon as you can to get a diagnosis and get started on treatment.

Hi Kathryn, so sorry for the pain you are dealing with. The others are correct in not immobilizing your arm if it is RSD...which it really sounds like it is. You do need to get with a good Neurologist and PM doc. If the blocks worked for you in the past, they might work again, if given in enough time. Early and aggressive treatment certainly is key!

As far as short-term disability goes, this usually runs through an insurance carrier and they have required claim forms that need to be completed. There is your portion, the employer's portion and then the doctors statement. Like Catra stated, get that paperwork and take it with you to the dr. If you are unable to work then you need to really stress that to your dr because he might not understand what you do and the effect it is having on your pain.

Hope it works out for you and you start feeling relief soon!!
Nanc

I am so sorry you are going through this kind of pain. Do get into see a neruologist. As far as getting a note from your doctor, talk to your doctor just like you did here. If he cannot understand the severity of this pain, or write a note for you to get 6 months to resolve this, he shouldn't be your doctor anyway. You need someone who will address this issue immediately, so that some kind of relief can be found. Diagnosis with a neruologist, and help with the pain specialist is what I would do. Sometimes physicians do not understand, but then there are those who do have compassion and understand the kind of pain you are experiencing. I hope you find that kind of physician. You need help, and time to diagnose and get this under control. I wish you all the Best. I cannot tell you it is RSD, as I am not a doctor, just a patient like you with other medical issues. However from the description, from the others on line who have RSD, noted there are similarities in the symptoms you are having. You will be in my thoughts and prayers. Keep posting for others to respond to you. This site has been helping me for two years now, and I hope you can find more answers. ginnie

Thanks for all the really helpful advice. I really appreciate it. It's easier to talk to people who really know how painful RSD can be. Thanks for the support!

I haven't been keeping my arm immobilized since I've been on bed rest. I remember my last bout of RSD and that the immobilization actually worsened the problem.

I'm having a MRI of my neck tomorrow to see if there are any cervical disc issues that could be compressing a nerve and causing the arm pain. I'm being sent to my neurologist so that she can evaluate the MRI and decide what's going on.

My rheumatologist said it's probably one of four things: return of the RSD, a manifestation of MS (which I don't have, but have been suspected of in the past) or a cervical disc herniation compressing nerves. He said she might also order a nerve conduction study.

I've started taking Tylox for the pain, but even that doesn't make it go away. It dulls it a bit, but that's it. I guess it's better than vicodin, though.

As for work, my rheumatologist said he doesn't know how I could possibly go to work as it stands now. He's waiting for the MRI results and what the neuro says to determine what will happen in that regard. I do have short term disability paperwork provided by my job (it's town government and a union position, which helps). I'll have to get either my neuro or rheumatologist to fill it out, though.

I don't know if anyone would know this, but would a cervical disc herniation cause temperature changes in my arm that can be detected by other people? Can they also cause swelling?

My whole arm is inflamed and when the pain really acts up, it turns ice cold. My husband and best friend have felt how cold my arm gets, so it's not in my head.