I am a software developer and have been working for 8-9 years. Below is a brief history of what I suffer from its course of proliferation and associated symptoms.
It all started About 6 years back with pain in the neck. This eventually spread to upper back/mid back. over the next couple of years it went from there to glutes and then eventually my feet.
-> affected body parts feet, glutes, elbows, neck, upper back, mid back, fingers...
-> Can't hold static postures for more then 10-15 minutes(standing or sitting). can't ride bikes for long(30-35 minutes max)
-> after stepping over the above mentioned time limits I first feel muscular discomfort first and then with increasing time burning pain takes over.
-> actually I feel extremly vulnerable while standing...same feeling with my fingers while I am playing the guitar...feel extreme sensitivity to strings on the guitar, particularly the small finger.
-> Tire fast...do 20-25 minutes of running and some core exercies...in last year have seen majore energy level drops...
endurance and strength have both suffered...
-> my musculature seems to have changed almost everywhere..its more wiry, fibrous...like in older people
-> don't have gerd but my esophageal valve is loose(upper GI scopy confirmed this) no medication for this
-> there is no pain while sleeping...don't sleep that long(4-5 hours) though
-> Was found b12 defficient...took meythl cobalamin injections for it...levels are better now...
-> vitamin d3 insufficient(20 ng/mol i guess)...taking calcierol satchets on a monthly basis...
-> Feel lot of pulsation...in my feet, fingers(when i stretch my palm wide open), actually I have hieghtened sensitivity to my heart beat all around my body...
-> can't seem to hold penile erections for sufficiently long time
-> never had any major illneses...can't remember far back in childhood...
Please note that I have already visited 2 neuro physicians and 2 rheumatologists and none of them can seem to point to anything?
Have done thyroid test, ra factor test, and some other preliminary tests but nothing
has shown up.
I am worried that because of my muscular discomfort and growing fatigue, I may not be able to lead a normal life...in fact I can't seem to work full time anymore...is this going to get worse...what can I do to stall this problem?
Have you thought about fibromyalgia or chronic fatigue syndrome?
While reading your post, I thought I was reading about myself concerning about 99% of the symptoms you listed. (Limited tolerance for any one position for more than a few minutes, not sleeping much, sexual disfunction, pain everywhere that intensifies, etc etc etc).
I have fibromyalgia aka FMS [on top of a list of spine issues from two major accidents...but I digress...=)]. It might be something to ask your doc about and read up on.
I too was tested for several other diseases before they realized I had 16 of the 18 tender points associated with FMS.
"FMS is classified as a nonarticular rheumatic disorder. The term fibromyalgia suggests that pain is found in fibrous tissues, muscles, tendons, ligaments, and other “white” connective tissues. Inflammation is not characteristic in FMS, and it is not a muscle disorder. The muscles of patients are normal, as is muscle strength. Alterations in the strength of muscle contractions most likely are attributed to pain or poor muscle conditioning due to lack of activity.
FMS ranks third in frequency of diagnosed rheumatic disorders, following osteoarthritis and rheumatoid arthritis, and FMS symptoms are said to be the second leading cause of work-related disability in the USA. It is estimated that between 3 and 6
million Americans have FMS symptoms, and between 80 % and 90 % of diagnosed patients are female. Although the onset is usually in patients aged 29 to 37
years, formal diagnosis typically occurs between ages 34 and 53. An average of 5 years passes before a patient receives an appropriate diagnosis."
Welcome to the Pain Mangement Forum I am glad that you found us on MedHelp and took the time to post...but very sorry to hear about your painful, activity limiting condition. Most of us live with the effects on chronic pain 24/7. We know how difficult the journey is and how chronic pain (cp) can wreak havoc in our lives.
I am far from an expert. We are a support forum but here are my thoughts.
Neobeautie has provided you with a good list of information on Fibro. However if you have seen two rheumatologists I would hope that they have considered this condition and ruled it out. If not please discuss this possibility with one.
Chronic Fatigue Syndrome is another possibility but again I would have thought that the rheumatologist(s) would have ruled that in or out.
Unfortunately they are a lot of disease conditions that can begin with your symptoms. Pinpointing exactly what your diagnosis is may be difficult. It should be an easier diagnosis as time passes because other more definitive symptoms may appear. Yes I know that six years is a long time. Hopefully an astute physician will come up with some better answers for you very soon.
Of interest is your Vit B12 deficiency. Unlike the Vitamin D deficiency which is fairly common in cold colder climates, a Vit B12 deficiency is not as common and can more often be linked to an underlying medical condition. However it can be simply induced by very poor diet, lacking in protein foods.
Vit B12 deficiency is most often caused my malabsorption issues, such am I have. (I lost over 3 ft of my small intestine where B12 is absorbed.) It can also be from the lack of an intrinsic factor.
Have you seen a good diagnostician? Are you being treated at a large clinic associated with a teaching hospital? All these things should be taken into serious consideration when searching for a diagnosis.
I don't know your approximate age or location but don't give up. Consider a thorough clinical evaluation at a teaching hospital clinic or by a well known national clinic. Second, third or fourth opinions can prove beneficial. A new set of eyes and another brain can often put facts together that others may not have thought to be unimportant.
Is your pain and fatigue being managed? If not I encourage you to be assertive and request that is be managed. You are your own best health care advocate.
Please let us know how you are doing. I will watch for your updates with interest. I wish you the very best.
Thanks guys! I lost this post for some while...tends to happen when you don't seem to be going anywhere...
I wouldn't want to jump the Fibromyalgia gun that fast, although I understand why you seem to be pointing there...i've read quite a bit on FM and a few of its cousins(well yeah they all sort of seem connected, maybe not medically, but by how the sufferers suffer! )
I don't have tender points, stiffness etc...Alloydynia , Hyperalgesia don't seem to be at work in my case...I am not sure if there are any other coexisting conditions although I have been evaluated for chronic myofascial pain without much success...but then FM has such a variable presentation...:(
I do have postural intolerance, but I don't have body wide pain like most fm patients, not in the usual sense(the above mentioned two terms)...
I do see the b12 issue that you are raising, but are there any studies that you could point to which talk about b12 linked to an underlying condition...please note that I use sublingual b12 tablets...
I am from India and its not a great place to be in if you have FM or something equally perplexing...but if you could suggest somebody who could provide distance consulation then that would be awesome, or a specialist/expert on medhelp itself!!
Please do note that I have not been diagnosed for FM yet...do you think that there's some kinda thyroid condition here...
I am not sure how can fatigue be managed? But I won't get any help here because its not that disabling...most people i go talk to think I am all fine...I am still holding a job, although I plan to go part time very soon because it sort of becomes unmanageable!
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