Chronic pain undiagnosed for 5 years.

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Luke Palmer
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Date Joined Nov 2017
Total Posts : 10
   Posted 11/5/2017 9:46 AM (GMT -7)   
Hi I have suffered with chronic pain in my entire right arm and hand for 5 years. Until today I have been reluctant to ask anyone but my doctor for advice but as is apparent that isn't helping.
I have constant stabbing/shooting pain in my arm and hand which has progressively worsened since it began.
After an mri scan a torn ligament was found in my right wrist and a cyst had formed. The cyst was perforated and I had steroid injections to rid me of the cyst back in 2014. But the pain continues and the doctors cannot or will not give me a possible diagnosis.

This has cost me my career of 8 years in the armed forces and in a years time I won't be able to get that job and rank back without starting from scratch.

I request a bit of advice on what my condition could be thank you.

straydog
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Date Joined Feb 2003
Total Posts : 15152
   Posted 11/5/2017 11:52 AM (GMT -7)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Luke Palmer
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Date Joined Nov 2017
Total Posts : 10
   Posted 11/5/2017 1:16 PM (GMT -7)   
Hi thanks for the reply. My cyst was a ganglion cyst and my problem has been investigated in depth but I am simply told I have chronic pain and I must live with the pain on medication. I've seen paediatricians and rheumatologist.
Nerve conduction test - negative
Carpel tunnel test - negative
Arthritis check - negative
Tenosynovitis check - negative
X-ray, ultrasound, MRI, steroid and anti inflammatory injections and full blood work up.
I can't deny that the doctors have done their utmost to find a solution but when I question what my condition actually is or what it consists of they are vague and avoid any straight answers which is a cause for concern.

skeye
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Date Joined Mar 2008
Total Posts : 3051
   Posted 11/5/2017 1:58 PM (GMT -7)   
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)


Luke Palmer
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Date Joined Nov 2017
Total Posts : 10
   Posted 11/5/2017 2:09 PM (GMT -7)   
I'm just wondering if there is another with my type of symptoms with maybe more info or possibility to confront my doctor with.

And any tips on medication or things I can do to possibly reduce pain would be a massive help thanks.

Luke Palmer
New Member


Date Joined Nov 2017
Total Posts : 10
   Posted 11/5/2017 2:24 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

Luke Palmer
New Member


Date Joined Nov 2017
Total Posts : 10
   Posted 11/5/2017 2:38 PM (GMT -7)   
Ok just off your post I can say pain from light touching, temperature change. My pain is a constant borderline unbearable shooting /sharp pain and jumps past that line frequently. And I have a burning sensation in my fingers when it jumps. As for what exacerbates it almost everything - temperature change, leaning and using my right arm at all.

skeye
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Date Joined Mar 2008
Total Posts : 3051
   Posted 11/5/2017 3:26 PM (GMT -7)   
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)


Luke Palmer
New Member


Date Joined Nov 2017
Total Posts : 10
   Posted 11/5/2017 4:20 PM (GMT -7)   
After a look at your website I looked it up on the NHS and there is a system in place for chronic pain management. https://www.nhs.uk/conditions/complex-regional-pain-syndrome/
If I attend and get a diagnosis I will have access to a team. Pain doctor, physio, psychologist it's well established I don't understand why it hasn't been mentioned to me.
Thanks for listening I've never spoken to anyone going through chronic pain before it's really good to talk to someone who understands.

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 3051
   Posted 11/5/2017 4:41 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

pitmom
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Date Joined Jan 2015
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   Posted 11/6/2017 7:15 AM (GMT -7)   
Have to ask...burning in which fingers?

There are 3 main nerves that involve the hand. I have ulnar nerve damage and have numbness, tingling and burning pain in the pinky and ring finger of my left hand. I also have pretty much non stop pain along that side of the forearm. Achiness, like the flu, only localized. The only thing that really helps at all for me is wrapping the forearm in a heating pad. My symptoms tend to worsen with leaning or pushing or overuse of the left hand.

I've also had ganglion cysts in the right wrist which caused problems with range of motion. I had surgery to remove cysts on 2 occasions and they also removed some nerves to help keep me from getting more cysts.

I also have carpal tunnel syndrome in both wrists but only had the release surgery on the left. At times, usually when I have to use a strong grip, my right wrist will feel like an overwound spring has popped and the pain can go down into my hand as well as up into the forearm.

Have you noticed any muscle wasting? Any discoloration? Any changes to the appearance of the shoulder area? Does it wake you during the night? What position were you in? Is it worse in the morning or progress through the day? Have you tried 'splinting' the elbow while sleeping? Do you ever feel like something is moving (rolling over) the inner pointy bone of the elbow near the 'funny bone'?

The reasons I'm asking is first, to help you define what you are experiencing more clearly...second, to see if your symptoms match Thoracic Outlet Syndrome or Cubital Tunnel Syndrome...third, to give you ideas to try for some relief.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, multiple wrist surgeries, multiple herniated discs, tarlov cysts, whiplash, bursitis of hips, grade 5 right shoulder separation and torn labrum, ovarian cysts, fibroid tumors of the uterus

Luke Palmer
New Member


Date Joined Nov 2017
Total Posts : 10
   Posted 11/6/2017 11:55 AM (GMT -7)   
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 Palmer
New Member


Date Joined Nov 2017
Total Posts : 10
   Posted 11/6/2017 12:03 PM (GMT -7)   
Pitmom also it has been suggested It is work related my job involved heavy lifting and heavy tool use I was an aircraft mechanic in the navy but my job also consisted of aircraft movement/marshalling, soldiering and weapon use on land and sea. Basically heavy hand use and heavy lifting every day.

pitmom
Veteran Member


Date Joined Jan 2015
Total Posts : 2152
   Posted 11/7/2017 5:41 AM (GMT -7)   
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!
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, multiple wrist surgeries, multiple herniated discs, tarlov cysts, whiplash, bursitis of hips, grade 5 right shoulder separation and torn labrum, ovarian cysts, fibroid tumors of the uterus

Luke Palmer
New Member


Date Joined Nov 2017
Total Posts : 10
   Posted 11/7/2017 3:28 PM (GMT -7)   
Thank you I appreciate it and you've certainly been through the mill I hope your also doing well. I've not heard of elavil but it may have a different name in the UK. I've been switching medication for years but these are the ones offering any relief but now I'm pushing the dosage levels.

My medication will probably be a different name too I'm taking the following -
Amitriptyline - 40mg nerve related
Co-codamol - 30mg codeine 500mg paracetamol
Pregablin - 300mg nerve related
Sertraline - 100mg antidepressant

Thanks again I will keep you posted

Luke Palmer
New Member


Date Joined Nov 2017
Total Posts : 10
   Posted 11/7/2017 3:30 PM (GMT -7)   
Just looked it up it's Amitriptyline lol
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