Carpal Tunnel Syndrome

"First off, I want to emphasize that this is a long post, but I would truly appreciate it if you could take a few moments to read it. I'm writing because I feel like I'm battling this life-altering condition alone, and perhaps someone here can guide me towards a new direction.

Who I Am:

I'm a young guy in my early 20s who has been living with increasingly severe neuropathic pain and functional decline for years. Despite countless tests, doctors, and specialists, a full explanation for what's happening to me remains elusive. The pain restricts me in almost every aspect of my life, and I'm desperately searching for any way to understand its cause and hopefully find hope for improvement.

Why I'm Here:

I'm openly sharing my entire medical history here, in extensive detail, because I believe in the power of community and personal experience. Perhaps someone here has gone through something similar, knows of another case, or can point me towards a test or doctor I haven't considered. Any advice or thought could be the next step in my journey.

I'm reaching out in the hope of receiving new directions, insights, or testimonies from people who have experienced something similar to what I'm going through. I've been dealing with a complex medical issue for years, which has worsened over time, and all the tests and treatments I've tried have failed to explain its source. I'm writing this story because I believe someone here might be able to shed new light on my path.

Problem Development:

From the age of 16, I had recurrent sore throats, strep throat, polyps, and surgeries (polyps at 17, tonsils at 18). But until 18, aside from the winter, I was generally fine.

Age 18:

Constant sore throats, worse after talking.

General weakness and feeling unwell, especially after exertion.

Periodic pains in the upper body (ribs, upper abdomen, lower chest) with a feeling of heat in the body, tingling, and mild electric shocks, after prolonged talking.

Along with the feeling of heat, I had recurring weaknesses in my left arm that would come and go about once a month, lasting a day or two, disappearing, and then returning again after a month.

Extreme sensitivity to cold – cold caused immediate sore throat, feeling unwell, and even a stuffy nose.

Despite this, between 18 and 20, I still functioned relatively well: I went to school (I'm in a pre-military program), met with friends, maintained a social life, and tried to ignore the pain. I was able to walk, lift things, study, and manage a routine, even if it caused me suffering and feeling unwell afterward.

Age 20 – Onset of Worsening:

During semester break, I decided to try and "fight" back, since nothing physical or psychological was found, and get myself back to full function – I made great physical efforts hoping it would help me get stronger. But after that intense effort – pains on a whole other level were added.

The pain started on the left side: At the beginning of all the new pain stories, the weakness in the left arm that I told about above returned, but this time it did not disappear, it turned into a dull and light pain in the left shoulder, but within days it turned into a heavy and pressing pain that gradually worsened and did not leave.

Spreading tingling and numbness: The pain began to spread along the entire arm, accompanied by tingling, numbness, and stabbing pains, and reached the hand.

Repetitive process: After a week to a week and a half, the same process started in the right arm as well – the pain appeared similarly, intensified, and spread to the hand.

Absolute dependence on effort: Since then, in every muscle I use – even with moderate to heavy effort – the same process starts again:

First: dull and light pain.

Then: The pain becomes heavy, pressing, and burdensome, with tingling and numbness.

Finally: If I don't stop the activity, the pain spreads along the entire relevant area I'm straining, and remains at high intensity even after prolonged rest.

It is important to note that the pain after exertion does not come directly but a few hours later and in an unbearable way.

The pains are mainly the currents that started to spread really all over the body until they gave me Lyrica. The Lyrica that helped the pain to worsen and spread even more, but it does not return me to function because the moment I return to function the pain returns, worsens and spreads, with an emphasis on the worsening, if I lived only with pain that does not worsen, I could survive it.

But I also found that Lyrica has a certain time that affects it.

From that moment on, any moderate to heavy effort (and sometimes even just resting) became a trigger for an unbearable pain flare-up that lasted hours or days that can also continue and worsen indefinitely. I did not receive Lyrica.

My Current Condition:

Severe neuropathic pain: Burning, stabbing, dull, and pressing pain that doesn't go away even at rest. Significantly worsened by activity, even very light. Lyrica stopped the worsening.

Functional limitations: Any activity – even short – worsens the pain and brings back tingling, numbness, and severe pains. I'm limited in movement, not because of muscle weakness but because of unbearable pain that intensifies with every movement. I always manage to shower properly, not to mention brushing my teeth and preparing my own food. These are just examples of many things I can't do because of the pain.

Extreme dry feeling: Periods of extreme dryness in the body, skin, and eyes, which appear along with increased pain and tingling.

There were hours about fibromyalgia, but my condition, which is getting worse, and many other variables do not quite match it according to other doctors.

I went through all kinds of physiotherapy, hydrotherapy and all kinds of therapies and occupational healings, but again, my condition did not change and even worsened.

Tests Performed:

Neurology:

Skin biopsy: Severe decrease in small nerve fiber density (3.58 percentile for my age) – Small Fiber Neuropathy.

EMG/NCS: Mild chronic neurogenic changes in the deltoid and biceps muscles bilaterally, mild carpal tunnel syndrome on the right.

Imaging:

MRI of the brain, neck, and sacroiliac joints – normal.

CT of the lumbar spine – mild discopathy only.

Bone scan (2022) – mild changes in the tibia and shoulders (looks like effort/arthritis).

Laboratory and autoimmune tests:

Collagen disease panel (ANTI-CCP, RO, LA) – negative.

Vitamins (B12, B1, B6, vitamin E), HbA1c, TTG, CPK – normal.

HLA-B27 – negative, HLA-B51 – positive (possibly related to Behcet's).

Fabry test was taken (awaiting results).

And I took and passed many tests that did not show what the problem was.

Including psychological and psychiatric treatments.

I went through 4 different psychological treatments, and no emotional or mental problem was found that could explain the symptoms. The treatments did not change the intensity of the pain or the patterns of exacerbation.

Why I'm Reaching Out to the Forum:

I'm looking for new directions of thought, perhaps a link between the recurrent infections at a young age and the development of the disease and all sorts of other ideas and directions from other people. If anyone here has experienced a similar situation, knows a doctor who specializes in complex cases, or can recommend further tests – I would be very happy to hear.

I'm not giving up, and I'm ready to do whatever it takes to try and reclaim some of the life I had before all this started.

Thank you very much to everyone who reads, comments, and supports – any advice could be the next step towards a solution."

I am feeling despondent,powerless and lacking motivation but it's the powerless part that seems to be annoying me the most I just don't know why I am like this I can't explain it I just feel so low the guy that runs this particular group knows what I have been through the past 2.5 years both physically and mentally and even he said WOW when I told him I don't know if it's what recently happened to me where I had a massive psoriatic arthritis flare especially my left arm and hand and fingers which swelled up to 3 times the size of my right hand and I had no grip no feelings because it triggered off my cubital and carpal tunnel syndrome to the point that I have no feeling in my pinky finger and ring finger and the back of my hand is numb I had to wait a month to get a steroid injection to bring the swelling down or its the thought of my pending operation for my cubital and carpal tunnel I just feel at a loss and can't explain it!!!

I met with a lovely arm surgeon this morning I am going to have surgery both of them together under general anesthesia am I looking forward to it NO but something has to be tried to kill the nerve pain somehow for the very long time that I have had it if it works brilliant if it does not at least I have tried as they say it is better to have tried and failed then not to have tried at all!!

It seems as though health issues are here to stay I am sure just to hack me off I think everything is going OK then something else unexpected hits recently back in June I had been diagnosed with bilateral cubital and carpal tunnel syndrome in both elbows and wrists but it was regarded as moderate but still very worthy of an operation especially my left because of the severe nerve pain so it was just a case of waiting for a date to speak to and arm specialist surgeon which is 21st August 2024 but my health decided otherwise on July 8th my left arm from my wrist into my hand palm and back of and my pinky finger and ring finger decided to go numb and swell up like a Bitch 3 times the size of my right hand I got in contact with 4 doctors and eventually got an appointment to see a Rheumatologist on the 8th August who said I have had psoriatic arthritis flare up which put even more pressure on my cubital tunnel syndrome and my carpal tunnel syndrome I had to have a steroid injection in my ass it has helped but its still not sorted I have had to increase my autoimmune meds to 20mg once per week as well then my poor dog has had to have a tumour removed from his paw plus and abcess from his jaw I am so very tearful at the moment anything will make me cry😭😭😭

My temper at the moment is on the shortest of fuses I find myself getting so angry so very quickly I know that it's pure frustration because of this damned left hand of mine I got diagnosed with cubital tunnel and carpal tunnel syndrome in both elbows and and wrists a couple of months ago it was regarded as moderate then the 8th July I woke up with the back of my left hand totally numb and my pinky and ring finger totally numb I seen 4 doctors one of them at the hospital I spoke to my Rheumatologists secretary to see if I could get an appointment sooner the earliest is next Thursday 8th August a full effing month from when it happened the nerve pain shooting down from my elbow is off the scale the simplest of things irrititate the life out of me plus I am having to probably wait much longer as my appointment with the consultant arm surgeon is not until 21st August and it's just to see if I can get an operation on it not the actual operation itself if I get told it's at some point next year I will absolutely flip right there and then I will probably get thrown out of the hospital some of you might say well that's overboard well you would be very wrong if you had walked in my shoes for the past 2.5 years and the physical and mental trauma that I have been through you would get it no one person should have to go what I went through am still going through!!!

Just got surgery for carpal and cubital tunnel release and an ulnar nerve relocation! I am so incredibly grateful to have the chance to have it taken care of. So far all is well with no crazy side effects except for the cramp from the tourniquet is driving me crazy and I haven’t been able to sleep for days lol. I do have strong prescribed sleeping pills for insomnia I already have that just aren’t working so any other advice or distractions are welcome and appreciated! It’s weird because the pain is way less than my original level was pre-surgery, but it’s just a different, uncomfortable, and inconvenient thing.
#AnkylosingSpondylitis #CarpalTunnelSyndrome #cubitaltunnelsyndrome
#Surgery #Insomnia

It's not a thought On Monday just gone it was a red hot day which was total surprise as May was alright could have been better June a total washout July up to now nothing to write home about so I made the use of it I took my dog out early before it got too warm git back with plans in mind to work in the garden but instead I said stuff that this one day might be our summer my wife was out dog sitting for our son and daughter in law so I chilled out in our summerhouse catching the rays then before I knew it it was 6pm my wife having woken me fast asleep still in the summerhouse I went to stand to greet her and realised my left arm and hand were asleep my pinky finger and my ring finger numb I just thought it would recover (I have just been diagnosed with carpal tunnel syndrome and cubital tunnel syndrome in both arms but they were absolutely no where near this kind of numbness and pain my wife said when she first walked into the garden my hands and arms were both down by my side as of 6pm tonight my left hand and fingers my wrist and more than three quarters of the back and side if my hand are numb and my palm is swollen right up I have been in touch with my specialist rheumatologist secretary and a helpline who are going to phone me tomorrow afternoon I am worried as to the outcome as my health has not always agreed with me !!!

I'm here because I work full-time and struggle to have the energy for anything resembling a life (hobbies, friendships, new experiences, all that jazz) though I have a supportive partner and family, I'm stuck between a rock and a hard place (the rock being our crumbling health service and welfare system, the hard place being my need to keep my job so I don't starve). As I don't use any kind of mobility aid, people rarely realise I have any kind of disability (until I open my mouth and put my foot right in it!) but several bouts of covid have left me permanently fatigued and some days it's an effort just to keep putting one foot in front of the other. If you've been through similar lived experiences and have any advice, I would love to chat.

#MightyTogether #AutismSpectrumDisorder #Dyspraxia #CarpalTunnelSyndrome

THIS MIGHT GET LONG

I haven't been on in a week or little more. I love all the encouragement here, and at the same time can't handle hearing others issues. Makes me feel like an azz cause he I am venting. My head is kinda messed up again and my flashbacks are back. I went to my daughter's yesterday to watch my youngest two grandsons. Actually my daughter offered to pick me up so I didn't have to walk the half mile in the heat. When I asked about my oldest grandson she informed me that he was several hours away but coming back that day as he had a severe breakdown and had to get inpatient treatment. Bipolar and Sciz (never could spell that word); my ex-husband has the first and my middle child has both. I have major anxiety and depression. She asked me not to tell anyone as it wasn't announced to outside their household. When I first heard it was like getting punched in the gut. Had to fight my head in convincing myself I was a good parent. My sons first time in inpatient he was eight. What I didn't understand until around 5 years later was that he heard voices (at very young age) that told him to hurt or ki** people. I had to learn to read his body language, moods, tone of voice and think three steps in front of him to prevent any violent outbursts. He went through trial and error will a multitude of medications before the proper cocktail was found. But he had numerous meds that he had adverse reactions to. Ranging from hand tremors, eye twitching, weight gain and seizures to name a few. He's in his middle twenties now, able to not be on any medication and is doing well. Yet he hates me for all the placements "I" put him in. Of around ten, I asked his doctor only once to please place him as I needed a break. The other times either his doctor or the school was persistent that he needed more help than what I could give. I explained to him that "his behavior is what sent him each time I had to take him. All I did was sign the paperwork. Back then I was afraid if I hadn't taken him for the help I know he needed that the school or doctors could have him taken from my care.
So now my grandson is facing the same hard road. My daughter also has more milder Bipolar yet is in denial. From what my daughter told me was that her and her wife had gotten into a huge disagreement/fight and my oldest grandson lost it. My daughter-in-law is staying at her parents and they are leaving for a 3 night 4 day family vacation as planned. When they returned will be going into counseling for the family. My son's actually live together and last week I received several phone calls from the youngest fiance saying they were fighting will the first one saying they were close to becoming physical. I had already been on my way there but after that phone call disregarded the actual speed limit and made my own. Surprised her when I got there sooner than expected. The third call came in the midst of my severe head cold and was miserable. My oldest called and after I talked with them both over the phone I told them I am not coming as I could not safely drive, that they are both adults they need to figure it out themselves and the needed to grow the **** up.
Today I drove a friend to run some errands and he triggered me but I could control my reactions. He tells me every time I take him somewhere that he has PTSD when riding in a car. So he's saying; your speeding, slow down (only once was I going more than 5 over the limit). Grabbing the handle at different times, etc. I explained that I understand PTSD and I'm actually a very good driver. When I asked where his ptsd came from, he said he didn't really know as he hadn't been in an accident unless it was when he was little and don't remember. But my ex (abuser) would constantly criticize my driving. Yelling even, and threatening. Once he made me pull over as he said I turned the corner at the light wrong and he was driving. Well, let's just say that was the second time he made me walk home.
On a lighter note, I should be getting my apartment soon. I'm praying it's this week. I will be calling the lady in the morning and asking when I'm supposed to come sign my paperwork so I can move in. I'm so tired of couch hopping. Carrying my things that I'll need for several days everywhere I go. Been doing that since end of January. As grateful as I am that I've been able to do that and not be out on the street, it's old. I'm old! Or at least my body is.
I was talking to my uncle the other day and I told him that I had written down everything I've been diagnosed with because I always forget and just tell the doctor that I've listed the major issues. But with listing my hearing loss and requiring glasses to plantar facility's to carpal tunnel syndrome to hEDS to C-PTSD I have been diagnosed with 47 different things. When I go for my yearly physical next month my doctor isn't going to be happy because I haven't gotten my mammogram or my colonoscopy done. But as I told my uncle, my head can NOT handle knowing anything else is wrong with me. I don't let any of them define who I am. Yet in some ways they do. My triggers for my flashbacks define me, as does my anxiety and pain. Everyday those 3 I deal with 24/7. I'm like trust me I know I have medical issues, major non life threatening one. Even if I did take those tests and they found something wrong, I don't know that I would take measures in trying to make things better.
Every year for the past 45 years I had been diagnosed with something new because my body is slowly deteriorating. This past year, I've gotten 4 new diagnosises. When I asked my uncle if he had seen where I gave his birthday wishes he said yes and thanked me. Then we were talking about age and medical problems. I told him that I don't want to live to be his age (73) I'm 52 because of how my body already is. Yet I want to live and see my grandsons grow into men. It's days where I allow myself to think deeply about myself that ... it's just very depressing. I always bring myself back up to being positive.
I do apologize this is pretty long. But I thank you for allowing me to express myself and vent. I appreciate you all for reading it through. May God Bless each and everyone of you! #PTSD #c -PTSD #ChronicPain #ChronicIllnessEDS #MentalHealth #DomesticAbuseSurvivors #EmotionalAbuse