Discussions By Condition: I cannot get a diagnosis.

Severe Sporadic Diffuse Pain Everywhere

Posted In: I cannot get a diagnosis. 29 Replies
  • Posted By: Anonymous
  • January 26, 2009
  • 00:28 AM

First some background info. I am a 26 year old male, and was diagnosed with hypothyroidism when I was 19 and Addison's Disease when I was 21. While I struggled with getting healthy again after that (I was hospitalized twice for a total of 2 weeks in a matter of 6 weeks when diagnosed with Addison's) after a couple years of adjusting and changing medication, I was feeling better and getting back to my life. Approximately 3 months ago, I went to bed like any other day, and woke up the next day with excruciating pain in my left forearm. I called my primary care physician and saw her in the next day. At this point, my forearm was just extremely sore and achey, but I also began to get pains in my joints, especially my knees and hands. The physician tested me for the muscle enzyme disorders, RF factor and nutritional deficiencies, and they all came back negative. Thinking it could be a complication of my pre-existing conditions, I was referred back to the endocrinologist. Even though I was happy with my endocrinologist, I thought it couldn't hurt to get a second opinion, so I went to a research hospital's endocrinology department. They tested for ESR, RF factor, creatine levels, nutrition again, most anything else they could test for in a blood draw, and everything but a slight Vitamin D deficiency came back negative. I was prescribed a vitamin D medication but am still feeling all the same symptoms and in fact have probably gotten worse.

I've been having pains of a few different "kinds" pretty much everywhere on my body. There does not seem to be any triggers, in terms of activity, or non-activity, other than it can range from fairly uncomfortable to downright painful to walk for too far. One "kind" of pain is in when my joints, knees, hands, ankles in particular, feel like they are being crushed in a vice. These are probably the most painful "kinds" of pain I have felt. They have brought me to tears at times. The second most severe "kind" of pain is along my muscles and it feels somewhat similar to "growing pains" I had when I was growing up, and it feels as though the muscle is trying to separate itself from the bone, for lack of a better description. Another "kind" of pain I have been experiencing is occasionally it feels as though I'm being pricked with a pin or something. It usually lasts just a couple seconds and then goes away. I seem to get a moderate amount of relief from all of these pains except the severe joint "crushing" if I aggressively rub or massage the area in pain. The last "kind" of pain I have been feeling is best described as just "not normal." Almost like bones or tendons or muscles are not in the right place or something or rubbing the wrong way. My joints seem to be popping and cracking far more often than they ever did in my whole life, and sometimes it can be really uncomfortable, bordering on painful, when they pop or crack.


Recently, as in just over the past week or so, (although looking back it may have been occurring more and I just didn't realize it) I have been having some limbs "fall asleep" for what seems like no reason, and it seems to take a bit longer to regain some feeling when compared to when one's foot or arm falls asleep because of posture, sleeping, etc.

If anyone, has any idea, as to why I might be feeling these pains, I would like to hear your thoughts. I am nearing my wits end, and feel very frustrated that I can't seem to get any answers. Thank you in advance.

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  • I just wanted to add that I have also had 4 severe migraines since October. I have taken Maxalt for them and they have always went away, though sometimes I have had to take a second dose. They seem to happen about every 2 or 3 weeks. Also, I have had ringing in my ears everyday for a while (I honestly can't even remember when it started) that comes and goes. As weird as it sounds, it seems to help if I shake my head a bit, and the ringing stops.
    Anonymous 42789 Replies
    • January 26, 2009
    • 09:42 PM
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  • Have you been tested for Lyme disease? Do you recall any infection or a stomach flu some time before it all started?
    Felsen 510 Replies
    • January 26, 2009
    • 11:18 PM
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  • Have you been tested for Lyme disease? Do you recall any infection or a stomach flu some time before it all started?I'm not sure if I have been tested for Lyme disease, but after reading a bit about it, it seems unlikely. Not impossible, but unlikely. I had not been hiking or in the woods for weeks before my symptoms started, and never had any rash or dart-board type pattern. I did not have any infection or stomach flu prior to the symptoms starting either. They literally began all at once, as if someone turned on a light switch. I went to bed one night feeling fine, and woke up the next day with excruciating pain in my forearm, and it has just progressed since then. Thanks for the help, I'll definitely ask my doctor about Lyme disease though.
    mmubiks 14 Replies
    • January 26, 2009
    • 11:41 PM
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  • In Lyme disease the symptoms may appear months after the infection. Also many people who have Lyme disease don’t actually recall any bite. I was once taught to always rule out Lyme disease and Tuberculosis when encountering strange symptoms. I was asking about infection, because an infection can start an immunological reaction, like reactive arthritis. It happened to me many years ago and all doctors thought I was crazy. All tests were negative. It took two years before I was myself again. Besides arthritis I had myositis, panniculitis, vertigo and other most bizarre symptoms. Good luck with everything. Let us know how it goes. It’s nice with feedback. :)
    Felsen 510 Replies
    • January 27, 2009
    • 00:32 AM
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  • Just an update.I was referred to a rheumatologist, as the endocrinologist thinks RA is a possibility, and after taking a week to review my medical records I am finally able to make an appointment. The date of the appt. is 3 weeks away! I had told my endocrinologist that I'm in pain, and severe amounts of pain at times, and they still did not put in the referral that it was an urgent matter. I have a serious love/hate thing going on with doctors right now. So besides calling my endocrinologist back to have them call the rheumatologist to tell them it's urgent, what else can I do? I have found a pain specialist doctor and talked to them, but that will take upwards of two weeks to get an appt. there too. I really don't want to go to the ER.
    mmubiks 14 Replies
    • January 27, 2009
    • 10:54 PM
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  • Dr. Robert O. Becker spent his life studying the biological effects of electromagnetic radiation, and his opinion would matter more to you than mine anyway. He's dead now, but he was a two-time Nobel prize nominee. Here is part of his interview, and keep your 'growing pains' in mind while reading his answers... http://www.energyfields.org/science/becker.html WHAT IS YOUR GREATEST CONCERN ABOUT WHAT THE EFFECTS AND CONSEQUENCES OF THIS INVISIBLE MICROWAVE AND ELECTROMAGNETIC POLLUTION IS UPON US ALL? There are basically two most important biological effects of electromagnetic effects on, or in, living systems are their effects on growth and development. There is potential for producing disturbances in growth processes in the body that can lead to the presence of malignancies. And in that regard, for a long time the National Institutes of Health had studiously insisted there was absolutely no evidence that there was ANY affect of such fields upon any cancer system in the human. I think this is absolute nonsense. And last year, the NIH - without any fanfare and rather quietly in the dark of the night - issued a little report that says there is a relationship between electromagnetic effects and childhood leukemia. Period. End of story, as though that was all. That's not true. Absolutely not true. THAT THERE ARE MORE CONSEQUENCES? Much more. And much more in the area of abnormal growth, the production of malignancies, the production of cancers. That's number one. The second one is in the operation of the central nervous system, the brain. There are definitive effects of low strength oscillating electromagnetic fields on brain function. Now, we look around at the present time and I have lived through roughly half of this period of increasing use of electromagnetic energies. We're looking at an entirely different behavioral aspect of the population at the present time. We certainly have a far different social attitude at the present time among the majority of the population.Ok well I'm done discussing this with you if all you have for me is more links to interviews and studies. I am trying to get healthy, and according to you, that would require moving to an area with no electricity or cell phone coverage, and to shun all modern electric conveniences that give off an EMF. Now we all know that isn't going to happen, so unless you have some practical, reliable, proven methods of combating this radiation, please do not post to this thread. Stating there is a specific cause for me (or anyone else) being sick but not providing us with any practical solutions seems useless. Oh, one question: Aren't you in excruciating pain every time you use a computer?
    mmubiks 14 Replies
    • January 28, 2009
    • 06:45 PM
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  • UPDATE: Well I couldn't get a rheumatologist appt. until Feb. 17, and in the meantime, I am still having pain that lasts a few seconds to a few minutes that happens all over my body, and feels like crushing, or ripping, or acidic. It just really, really hurts sometimes, and I have no answers. Also, occasionally, I am finding it hard to keep my balance. Not often, maybe once or twice a day, I go to take a step and just ever so slightly, I sort of have to catch myself. Well, just updating in case anyone was reading this and maybe had some help.EDIT: I also forgot about the muscle spasms. It feels like a "fluttering" of a part of nearly any muscle on my body. They are like twitches or something. As an example, my left eyelid has been twitching on and off for about a week now.
    mmubiks 14 Replies
    • February 5, 2009
    • 10:18 PM
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  • This is probably a shot in the dark but you should ask to be tested for epilepsy. Recently I have heard of two cases where it caused strange symptoms like the ones you mentioned. best of luck
    Anonymous 42789 Replies
    • February 6, 2009
    • 00:05 AM
    • 0
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  • Part update, part bump.No real change in symptoms. Seen my neuromuscular doctor. He examined me and said he didn't not find anything out of the ordinary. Suggested getting an EEG?? (EMG?, EKG?? something like that) to be on the safe side, but he did not think it would show anything.Soooo frustrated...
    mmubiks 14 Replies Flag this Response
  • Hi, I'm sorry to hear about your pain. I can relate, I have MS and hypothyroidism from Hashimoto's thyroiditis but am now going through testing with Rheumatologists for something that is attacking my joints, ligaments, tendons, etc. But I also tend to have a very uncomfortable diffuse pain that they term as "fibromyalgia-type" and also I've heard them use terms like "central pain syndrome". Lately, I discovered that a low dose course of steroids helps a lot and one doctor mentioned possibly having a suppressed adrenal system. I was curious if you are on cortisol replacement as a result of the Addison's disease and if they are monitoring whether it is the right amount for you or what the Endocrinologist thought of it? If you are on it, do you notice any changes in pain level after taking them? Prednisone is similar to the cortisone they use for replacement and since it works as an anti-inflammatory it can help with a lot of other pain syndromes. I sure hope you get the answers you need. I know how frustrating it is to be going through the waiting games, the limbo periods, and wanting an answer to why you aren't feeling good---been there, still there, and have great empathy for people doing the same. p.s. the "blaze" guy puts the electro-field comments (I think) in multiple categories on this board, it's quite annoying, good for you for telling him to back off ;). Sara:)
    SaharaRN 10 Replies Flag this Response
  • p.s again...forgot to tell you , the EMG is for testing the muscles of the body, usually the arms and/or legs to see if there is a problem with the nerve conduction--it tests the function of the muscles and the function of the nerves that supply the muscles. An EEG is the one they use to test the brain's spontaneous electrical activity and is usually used to see if there is any seizure type activity going on. There are various types of seizures that can cause a wide variety of symptoms. For example, my husband is suffering from tremors and they did both tests on him to try to find the source. I have had just the EMG done, which was used to determine if my weakness and fatiguability of my limbs was from the MS vs from more of a peripheral nerve problem potentially caused by problems with the spinal nerves. Hope that helps, although you've probably already looked them up yourself :). Sara
    SaharaRN 10 Replies Flag this Response
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  • One more thing, I apologize, it has to do with steroid replacement again. Have you read about the side effects of long term steroid use? I know that cortisol replacement is usually necessary for Addison's, but I don't know enough about it to know if even though it is supposed to be replacing a needed item if there is a risk of the usual associated problems that come with taking it long term. Like if they had you on more than was necessary for instance, or if the type of cortisone they are using matters, etc. I just know that long term or frequent steroid use for other conditions can cause a premature aging type condition of joints, bones, tendons, etc. Part of my personal mystery involves me having spontaneous tendon ruptures and dealing with chronic tendinitis and it can cause pretty severe pain in my limbs and I know the docs are now nervous about treating my MS with steroids because of already having something attacking those parts of my body. It just got me to thinking about your description of your pain and how it sounded like some of the side effects of prednisone use. It'd be interesting to know if any of that is possible with Addison Disease treatments. Hope you're having a good day with less pain.
    SaharaRN 10 Replies Flag this Response
  • Hi, first time poster to this page but wanted to share that I am in your same situation in many ways, except that 2 years ago I went numb from head to toe with 24 hours. After ruling out a stroke and everything else it seems pain receptors can actually "blow a fuse. The severe chronic pain remains. Here are some things to consider: make an appointment with a good neurologist. There are a number of things they can rule out as well for you and consider from a different perspective. The can do an EMG, evoked potentials, spinal tap (only if needed), skin/nerve biopsy, as well as rule out neuro disorders other specialists may not consider.Guillain-Barre syndromeMSEBVirusCNS abnormalties/lesions/issues/diseasesA huge list of other stuff Mine neurologist actually did all the work of a PCP, infectious disease, rhuematologist and neurologist since I had such poor treatment for so many years. He tested me for everything from heavy metal poisoning to Rocky Mountain Fever.Be sure to have the rheumatologist look at you for fibromyalgia. It is rare in males but certainly does occur. It can be severely painful and affects the areas you describe without evidence in lab results. There is a clear diagnostic screening process for it. Lyme DiseaseLupusFibromyalgiaI would also recommend you make an appointment with a pain specialist if other doctors aren't able to assist with pain. My neurologist actually manages my pain without opiods pretty well (best course if you can). Try antidepressants with antiseizure meds...sounds weird but these work for off label use for pain management really well, just have to find the best combination. (Go to the ER if you need a break in the meantime, its just a darn copay) Good luck and hope this helps. This is a serious situation that effects everything; work, family, your head, heart and just how you think.
    Anonymous 42789 Replies Flag this Response
  • get off the sucralose, splenda and aspartame- found in diet sodaseverything really, even in gum and children's vitamins : \read labels and do not eat this stuff anymore it is poison and it sounds like you have most of the symptomsread about them on the internet check the symptoms for each one- disregard the Industry(company who made the product) advertisements on different sites that tell you they are safe - there are enough testimonials and people who will tell you on facebook groupsyoutubeand google that they were harmed by them and know because they were where you are and stopped eating them and now are better.Trial and error, they learned what was causing them these problems- now you know too!
    founddog 188 Replies Flag this Response
  • Wow, thanks everyone for the replies.I'll do my best to address as many of the concerns and questions as I can.As for the steroid treatment, SaharaRN, I am on a replacement dose, and, as I'm sure you are aware, it is the amount the body would make naturally had the adrenals continued to function properly. Well as best as one can estimate, as the actual amount of steroid the body produces fluctuates from day to day, week to week, hour to hour even, but as best we can figure out, I'm on just about the right dose. I am aware of the side effects of too much steroids, and don't feel as though I'm experiencing those, as most of the early symptoms of steroid overuse, excitability, sleeplessness, water retention, are not symptoms I seem to be experiencing. My assumption was that the later symptoms of joint problems, etc., wouldn't appear without the other symptoms, which I have experienced when I took too much steroids. Does the body begin to compensate or adjust to the higher dose of steroids? I don't know, it's something I'll have to ask my doctors next time.I did look up the EEG, EMG, etc., but I unfortunately don't remember which one he told me, or if he said both, or what. And I have called their office twice to get answers and my paperwork sent to the next doctor to no avail. Just one of a few reasons I am no longer seeing that doctor or any of the associates within that particular hospital as incidences like this seem to be a problem systemwide, but that is another story.RebelBabe, I now have a few names of some neurologists in the Pittsburgh area (where I am trying to find better healthcare and take a needed rest and respite from school) and am making an appointment after I research them a bit, to find which might be better for me. I also have the names of a couple endocrinologists and primary care physicians. I am a bit unsure as to which route would be best, but I will probably make an appointment with all 3 just to cover my bases. My insurance said I do not need any type of referral so I figure I might as well. It's not like I hadn't seen 6 doctors in 6 weeks anyway. As I said before I was seen by a neuromuscular doctor, but did not feel as though I was adequately taken care of. I have since called half a dozen times with different concerns, questions, etc., and never receive return phone calls. So unfortunately, I am unsure as to what he tested for, ruled out, etc.Founddog, I never have, and will continue to avoid all sugar substitutes as I have never enjoyed the taste of them. I am aware of the research done suggesting the negative effects of such substances. OK, I hoped I addressed most of the concerns. I have recently found a bit of research about a link between vitamin D deficiency (the only abnormality on my bloodwork so far) and the onset or susceptibility of multiple sclerosis. If anyone has any information about it, I would certainly be interested.Also, SaharaRN, I realize MS symptoms are extremely varied from person to person, but I'm just curious as to what it may feel like. I read about certain symptoms, some that seem similar to what I am experiencing, but without actually knowing anyone with MS, I don't know exactly what it may feel like. For example, I seem to have bouts of slightly noticeable balance issues sometimes. Best way I can put it, is every once in a while, when I close and open my eyes, if I am walking, the moment before I touch my foot to the ground and close my eyes, the whole world just tilts for a split second, then goes back to normal. It honestly feels a bit like right before you start to get drunk, that slightly typsy feeling. Its a strange sensation, and it doesn't happen all the time, but would this be a balance problem that MS sufferers experience? I feel as though I have many symptoms that sort of defy logical descriptions. I try to explain I have "growing pains" like when you're little but much more painful and sporadic, and some people apparently never even had growing pains as a child so it can be frustrating.I hope to have some appointments soon, and I'll try to keep answering questions and updating my situation.Thanks again everyone for all the help and information and positive comments.
    mmubiks 14 Replies Flag this Response
  • Just a quick update:Still having all the same symptoms, though some days aren't quite as bad as others, some days are just terrible. Something that has been bothering me more and more recently, is when I climb stairs, my knees begin to feel like they are full of battery acid, just a distinct, burning sensation. It occurs when I get to the last few stairs of a staircase, and dissipates a few seconds or moments afterwards. If I take them real, real slow, it's not as bad. I have an appointment with a neurologist on June 25th. I hate to have to wait that long, but that's just the way it is. At times I have thought about going to the ER, but can't bring myself to do it. Until next time....
    mmubiks 14 Replies Flag this Response
  • You can view my documentary about Clove Oil and its properties.Go to glarstout on youtube. The benefits are many and it will not interfere with what you may be taking now. The oils are like food supplements since they are usually herbs or blends of herbs. They are super potent in that they can kill bacteria and virus and fungus. It is also an antioxidant so this will help you to take whatever is toxic out. I would however research your meds on line and see what side effects they have because most have them and they may be the symptoms that you are describing. Hope you feel better sooner then your next appointment date!sincerely,
    founddog 188 Replies Flag this Response
  • You can view my documentary about Clove Oil and its properties.Go to glarstout on youtube. The benefits are many and it will not interfere with what you may be taking now. The oils are like food supplements since they are usually herbs or blends of herbs. They are super potent in that they can kill bacteria and virus and fungus. It is also an antioxidant so this will help you to take whatever is toxic out. I would however research your meds on line and see what side effects they have because most have them and they may be the symptoms that you are describing. Hope you feel better sooner then your next appointment date!sincerely,I know and understand the side effects of my medications. I, nor do any of the doctors I have seen, believe my symptoms are stemming from my medications, and in fact, I MUST take my medications because my condition requires it, and I would die if I stopped. I have explored and tried all the available alternatives.I am not looking to watch a documentary, however wonderful it may be, unless it pertains specifically to my current conditions or symptoms, nor be told about the damaging effects of sugar substitutes. I am posting here in order to find those that have, or may currently be, experiencing similar symptoms to what I am. Also, maybe to find more answers to the problems I have. Irrespective of the effects of "Clove oil" or aspartame, I do appreciate the good wishes. UPDATE: Yesterday was the worst day I have had in a few weeks, and today is not much better. I have continued to contemplate going to the ER, but again, just can't bring myself to do it. I have felt this way since October, and somewhat beforehand, so I think I can grit my teeth through another few weeks until my appointment.
    mmubiks 14 Replies Flag this Response
  • Testing to see if I can actually post in my own thread....
    mmubiks 14 Replies Flag this Response
  • Just would like to address a topic that seems to be a popular one here.Assuming you read this, blaze, I have some questions and comments, regarding EMF/RF radiation.I noticed you post in most every single thread here about EMF and RF radiation and it's effects. I think there may be something to it, however, why is not the entire modern world sick, like some of us here? If these electromagnetic fields were so detrimental to human health, logic would suggest that no humans anywhere in the US or western Europe or Southeast Asia would be healthy functional beings. My question to you is, why aren't my brother, sister, girlfriend, aunts and uncles, mother, father, friends, cousins, et al., having symptoms of RF/EMF poisoning? Furthermore, if this is the case, what do you suggest we do about it? How are we to fight this destructive force? Virtually no research has been done, at least academically, that proves the efficacy of any of the products touted to shield oneself from EMF's. Also, the radiation you are describing is non-ionizing, that is, not powerful enough to ionize atoms or molecules. The most they can do is excite atoms. I will not attempt to suggest that they will have no effect on cells, but there has to be a lot more research done. All visible and invisible light is electromagnetic radiation. Is it possible radiation from space is making us all sick? In the links you have provided, they speak generally of EMF/EMR/RF radiations and their effects, yet make virtually no mention of the wavelengths, which is what makes different types of radiation, well, different. Sunlight is a form of electromagnetic radiation. So are microwaves. They are very, very different in their effects on atoms, and in turn, cellular organisms. The spectrum of EMR is wide and varied, and only in the far extremes of the spectrum is there any documented detrimental effects, such as X-rays and gamma rays. Every radio station on earth emits EMR. While it is certainly possible, it's just not terribly logical. Nearly everyone on earth should be sick if electromagnetic radiation was so detrimental to human health.I am not attempting to be mean or disrespectful, I am just hoping to provide some helpful critique, as well as furthering my own knowledge of the subject. Good research is built on healthy peer review and discourse. :-)A quick update: Today was really no better than yesterday. Not sure how much more of this I can take, I continue to think about going to the ER, but just can't do it. I really dislike hospitals. I have dealt with this for 8 months, I think I'll wait another few weeks until my appt. the 25th.
    mmubiks 14 Replies Flag this Response
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