I feel so alone and in agony, please help!

S

SuperCool

New member
Hello everyone, I'm new to the forum. Since I was a late teen I've been experiencing worsening pain symptoms, and until recently have not been able to find a decent physician to take my condition seriously. Early on, my condition was quickly passed off as fibromyalgia even though I don't meet the symptoms (tender points ect) I was also tested for lupus, had an EMG, and checked for any rheumatological conditions through blood tests, checked for hepatitis, checked for lyme. . . . Other than that, nothing more than a basic exam was performed on me and my constant complaints were ignored. Let me just also say that it is out-right ABUSE and laziness when the doctors casually assume every patient with chronic pain if faking or trying to get attention. These issues severely affect our lives and it needs to be taken more seriously. I also saw a neurologist who lazily passed everything off in a matter of fact way, and responded to my frustrated tears by saying I will probably never know what's wrong. Grrr . . . only 1 visit with him and he gave up immediately. I did look him up on ratemds though and apparently he has a rep for being lazy about evaluating patients. The pain seems to be getting worse with time, which concerns me that it is a degenerative condition.

As mentioned, I finally have a great doctor who is looking into the possibility of MS, but I'm having trouble getting my insurance to cover a CT scan. This pain is severely limiting me in college and I only have a few quarters till I graduate, so my time is more important now than ever. I also have a 2-year-old who is very busy and it's hard to manage. In addition, a side business I run online. I'm so overwhelmed and frustrated. What could be wrong with me???? I'm miserable!!!

Let me tell you some of my symptoms and maybe you can tell me what you think could be causing them. Often times us people with chronic conditions have to rely on each other for support and information, because doctors do not know nearly as much as we expect them to and often times have poor bedside manners.

Here it goes:

Cognitive dysfunction (poor memory, trouble processing info)

Random stabbing/feeling of being poked with needles in my knees. OMG it's awful!!!

Tired

Soreness up and down spine

Difficulty finding comfortable sitting position to subside the pain. When I cross my legs, I feel soreness in my knees/ankles. I don't know if that it the reason I hate it when my knees touch each other when I'm wearing something like a dress or shorts that do not cover my knees.

Lately it's worsening and I'm getting pain in my spine near my tail bone and it's inflamed. The pain is fiery at the tail bone, but leads all the way up the spine and gets duller the further away it gets.

At any time on any part of my body I will feel a dull pain for no reason at all.

Severe fatigue in arms and legs when I hold them up or use them for
even short periods of time for writing ect. They feel exhausted and I have a fiery feeling in my wrists.

Random unexplained intermittent twitching in legs

Unexplained itchy feeling often in random unexplained parts of my body (arms, legs, wherever. . . )

Tingling feeling in knees more lately. It used to be mostly an occasional tingle in feet and mostly wrists/hands, but seems to be spreading.

My legs/arms lose sensation easily when sitting/placed in certain position.

Widespread achy pain at random parts of my body at any time.

Bowel dysfunction that causes terrible bloating and upset stomach no matter what I eat. Pepcid and Tums do not help either.

Depression when in pain

Mild anxiety

I know I have more symptoms, but till then, do you think this could be ms? It hurts to walk , it hurts to sleep, it hurts to sit, everything hurts!!!

I've been in every direction trying to find the source of my symptoms and I'm exhausted and in pain. I want answers. Any advice is greatly appreciated.

I know there are great compassionate physicians out there, I just need to be linked with the right ones.


I've tried lyrica, cymbalta, and Savella, but nothing seems to be working the way it promises. I am also not big on taking any kind of drugs, nor do I ever ask for any, so I just don't understand how this could all be in my head. Something is causing these symptoms, but what?

God bless
 
Hello there and welcome!
I want to first start by saying that I know how you are feeling, which I think is important for anyone of us to know that we are not alone in this. Doctors are very good at passing you off to someone else or passing on you altogether. I have been through the mill myself now for some number of years. I am to the point where I want to give up and quit going to the doctor but part of me won't give up or give in to this until I find out what it is. Chronic pain is very real and we know that it is. I would never want this for myself or anyone else and to say or for anyone to say that we want attention is ridiculous, there are some out there that I am sure do it for that. It sounds that you are not one of those people. If you are not asking for the pain meds than that is one more reason they should believe you. I sometimes wish I could take those doctors or people in my life that don't believe me and give them this for one day, one day to carry and see if then they would understand. You have to keep going, keep going to doctors until you find one that will help you and not pass you on to another doctor. My frustration comes from my testing comes back fairly normal. However, I have every symptome of MS, but they keep saying that doesn't mean you have it. Well what does it mean??? I know sometimes it takes it's time popping up in tests and it can take years to diagnose. I am not hoping that I have this I am just hoping for an answer to all of it just as you are. Not for ATTENTION! I want my old life back, I used to be able to do a milliion things in a day, now folding a load of laundry or doing a sink full of dishes makes me feel as though I have just run a marathon.
You sound like you have fibromyalgia or it could be something more if it is progressing over time. I am not telling you to take medication but if you keep your body in this state of pain it is going to get worse. Your body needs some form of relief. Chronic pain is an overload on your nerves. They fire all the time because the body doesn't know how to deal with the pain anymore. Have you tried Tramadol? It is still considered a non-narcotic and works in the same way. Numbs the pain signals. I would think about that. DO you take Ibuprofen? If it was lupus that would help or Aleve. Lupus is an inflammation disease and you need anti-inflammitories for it, my mother has it I have been tested because it is genetic but I know it's not what I have.
You need to get yourself functioning. Have you done any cortisone shots or physical therapy? Could help. If it all comes down to it you may have to start with some Lortab or Tylenol 3 not all the time but just enough to give your body a rest once a day. Does your pain last 24/7, mine does. It wasn't always this way though, it built to this.
Have you seen a rhumetologist, they can be the best at diagnosing these kinds of ailments, if they are good that is.
Your symptoms sound much like mine except my paiin started in my pelvic area and then to my back, then down my legs, now up my back and down my arms and into my hands. Just started in my arms and hands. I also have a bladder disease. Just had atumor removed from my brain, have buldging disks in my spine, bone spurs. SO much more but too much to list.
I am truly sorry for you and I know how you feel but you need to finish that schooling to graduate for your own self-esteem and keeping up with a two year old is taxing.
I wish you only the best and in no way am I abdicating that you start narcotic treatment. There is also muscle relaxers to try, Naporsen, Cellebrex, I don't know if I am spelling all of them right. I take Cymbalta, Percocet, Oxycotin and Clonopine. I have two kids and they are older than you but just getting them to school in the morning is so hard. And attention, I am getting none, my family and friends gave up on me a long time ago. They think I just want the pain medicine. I tell you what if I could be pain free tomorrow I would never put another pain pill in my mouth ever!!!! I would be all to happy! People are ignorant until it happens to them.
I hope this helps you a little and I wish you the best and good luck to find out what is the problem - don't give up and don't give in!!! I thought about giving up last night and just letting myself wither away but I have to keep on going for my kid's sake.
I will pray that you find your answers.
Hugs!
 
Hi :wave:I read your post and really feel for you.

My wife has suffered from Lupus for 38 years and was deteriorating to the point of being wheelchair ridden. Many of the symptoms that you mention appear to be representative of Lupus symptoms, although there is blood tests that can identify Lupus.


edited

Also just a question, have you been in a car accident or had a bad fall at some point in the past? A lot of the symptoms you mention sound like you could have nerve pressure sending a pile of wrong signals to your body.
 
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