Chronic pain undiagnosed for 5 years.

Hello & welcome to the forum. I honestly haven't a clue what may be going on with your hand & arm. One thing I would do is ask for a referral to hand specialist. What type of cyst was it? Pain ongoing like this should be investigated, not ignored. If you dr isn't willing to help, then its time to get a new PCP & go from there.

I am sorry I am not of any help. Take care.

Have you heard of Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD)? Pain alone is not enough to make the diagnosis, and your post is a bit vague in terms of whether or not you have any symptoms other than pain, but you might want to read about CRPS and see if any of the other symptoms fit as well. CRPS is a diagnosis of exclusion (there are no diagnostic tests for it). There are typically 4 categories of symptoms which must be met to make the diagnosis, and symptoms include things like pain out of proportion to the original injury, allodynia (pain upon light touch), unexplained swelling, color and/or temperature change to the affected limb/body region, and neuromuscular dysfunction (EMG's & nerve conduction studies are still usually normal). Many doctors are unfamiliar with CRPS, and it often takes people months to years to be diagnosed. Personally, it took me 9 yrs to be diagnosed, although my presentation is a bit unusual, as my eye & face are primarily affected, not a limb, which is most common. CRPS is also notoriously difficult to treat & many of the conventional treatments for pain fail to have any significant effect. I was also seriously struggling with little to no quality of life (and had to temporarily give up my career) until I was finally diagnosed/found a doctor who was very familiar with the disease. I still have pain, but now I'm at least able to function like a semi-normal human being most of the time...

If you would like to learn more, a good place to start reading about CRPS is the website of the Reflex Sympathetic Dystrophy Syndrome Association, rsds.org.

Hope you find some answers!

Skeye

Post Edited (skeye) : 11/5/2017 2:14:12 PM (GMT-7)

I haven't I will definitely look into it thank you. 9 yrs that is insane I can barely cope now and my pain only got really bad about a year ago it's like an eternity when it puts you out of work. Thanks again

No problem! It does sound like you probably have at least some of the symptoms of CRPS. I believe that the RSDSA (the website I put in my last post) has a "find a doctor" feature, where you can search for doctors in your area that are familiar with the disease, as well as many other great resources. Most pain management doctors SHOULD be familiar with this disease, but not all are, and some are better than others (diagnosing, & especially treating, CRPS is definitely something that requires a lot of expertise)... I saw 2 or 3 pain management docs (among many, many other docs) before I was finally referred & diagnosed by a PM doc/anesthesiologist who is also a well respected CRPS expert. Although, actually, the first person to mention the possibility of CRPS to me was a neurosurgeon (some, but not all, neurosurgeons, orthopedists, neurologists, and primary care docs will also be familiar with the disease)... And yes, I agree, 9 yrs is pretty insane, but while CRPS is a rare disease, my presentation is extraordinarily rare (though the diagnosis made complete sense/fit perfectly once it was finally recognized). But I'm just thankful that I was finally diagnosed & now have a treatment regiment that helps.

Anyways, CRPS is a horrible disease, so I hope for your sake that it is not what you have. But I know how frustrating it is not to have answers, and sometimes even just having a name to put to the disease helps... Good luck in your search for answers!

Skeye

Post Edited (skeye) : 11/5/2017 3:29:45 PM (GMT-7)

Glad I could be of help! Chronic pain is very frustrating and isolating (to say the very least), especially when you don't have a diagnosis. Talking to folks here at HW has also helped me greatly at various times -- especially when I was struggling without a diagnosis or any effective treatments -- so I try to help others when I can. I sincerely hope that you are able to get some answers and some help! Keep us posted. We love to hear how people are doing! And just by sharing your story, you may help others in pain, too!

Skeye

Hi pitmom the burning is in all four fingers but not all at the same time its different every time it happens. The exact injury was described as a radio schaphoid joint effusion and a ganglion cyst dorsal to the lunate with dorsal synovitis overlying the proximal carpel row.

I mostly wear a long sleeve and warm glove to help with temperature change simply breathing on my uncovered arm/hand can cause more pain. Like you said leaning, pushing, gripping and use of my right hand cause more pain.

I haven't noticed any muscle wastage, discolouration or change of appearance. During stronger pain my arm and wrist stiffen up and are hard to move and it feels like my arm is ice cold and i sweat profusely which makes it worse.
It wakes me constantly I find it hard to sleep more than 3 hours without waking but I do not sleep on my arm I sleep on my left side and I rest my arm on my right side. There is no noticeable difference on what time of day it is. I haven't tried splinting and I don't feel the funny bone movement you described.

Thanks

Luke, I hope you can find the answers you seek and that it will be something that can be helped. I know how it feels to have something threaten the way one makes their living and gives them pain every day. As you can see by my signature, I've been through the mill a time or two. My heart goes out to you.

It definitely sounds like there is nerve involvement which might only 'show up' while you are doing certain things and unfortunately testing can only be done in certain positions. There are medications to help calm nerve pain...have you tried any yet? After my ulnar nerve transposition I would get 'electric shocks' from the nerve that were excruciating. My surgeon put me on Elavil, which was actually classed as an anti depressant but had a 'beneficial side effect' useful to calm nerve pain. Now, there are others available specifically for this.

Keep posting and let us know how things are going. Fair winds and following seas, sailor!

Just looked it up it's Amitriptyline lol