Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.
Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.
It almost sounds like you are having features of a headache. The sensitivity to touch or scalp sensitivity may be a feature of allodynia (i.e., pain to a nonpainful stimulus). Without further information, it is difficult to provide you with adequate information. However, it is important for you to understand that if you have not experienced headaches in the past and you are now having new head pains, seeing a neurologist is a good idea, just to make sure there is nothing serious causing this pain. Imaging of the brain and sometimes then neck may be indicated depending on your exact symptoms, your physical examination, and other factors.
There are other reasons for having tingling sensation, such as anxiety, demyelinating disease, etc.
The symptoms you describe are vague but should be evaluated further. I would suggest you go to your primary care physician. He/she will need to gather additional data on the history and symptoms. If there are abnormalities on the neurological examination, neuroimaging of the brain/spinal cord may be necessary.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
Hi, sorry to hear about all your problems. I’m a medical student and I have a few questions that I think may be useful in narrowing down what’s been going on. I’m interested to see what an expert thinks.
Any headache and is yes please describe?
Any changes in vision, specifically double vision?
Any complications with your pregnancy (preterm delivery, did you need a transfusion, extended hospital stay, etc)?
Did you have an epidural during the delivery and if so any problems with it?
Any history in you or your immediate family of bleeding disorders, autoimmune disorders or cardiovascular events (high blood pressure, heart attack, stroke)?
Are you double jointed?
You said your RA factor is negative. Any lab test abnormalities?
Has anyone done any imaging like MRIs of your spine or brain?
I apologize for hijacking thid thread,but my symptoms are almost identical minus the vomiting/vertigo.
1. I have severe headaches which feels like lightning, and the pain radiates to neck and shoulders
2. Blurred vision, not necessary double-vision but more near-sighted suddenly
3. Father died in mid 40s from 'heart-complications'
4. NOT double-jointed
5. RA negative,but blood test shows low granuloycyte - second year showing this - All other blood was normal
Can you help me? The tingling/joint pain/numbness is literally driving me crazy.
To top this all off, I am starting to get onset of bad nasal allergy/face pain. Tibgling is in my stomach too. Weird.
Hi, and thank you for your interest in helping.
Yes, I wake with a headache every morning starting in the back of my head, then either going away by noon, or turning into a full blown, lights off, in bed, migraine. Since I have been experiencing the vertigo, I have had blurred/double vision. I have worn glasses since 3rd grade and contacts since I was 13 and I do have horrible vision anyway, but I am even having a difficult time typing this and focusing. I can't watch TV for more than 15 min at a time, or even read do to the dizziness and double vision. The only difficulty with my pregnancy was IUGR (intra uterine growth restriction) and my labor was induced, but only 4 days before my due date and my daughter came out and still is perfectly healthy on all ends of the spectrum. I did have an epidural, and the only problem was that it worked better on my right side than left, but I was still numb on the left side, just not as completely as the right. Rheumatoid arthritis does run in my family along with a history of stroke, and high blood pressure. I am not sure about my labs, I can ask my Rheumatologist, but I know he said because of my family history, and the amazing effects the prednisone wean, that he was going to treat me for RA until he figured out what was going on. He also said that with autoimmune conditions, sometimes they don't appear right away on blood work. So I have another blood test coming up next month. I had an x-ray done of my right shoulder and neck about a year ago at a chiropractor and I do have several places of sublexation in my neck and upper spine.
I hope this helps you. If you need anymore info, please let me know. I really, really appreciate your help!
To summarize (and please correct or clarify any of this) you’re a 24 y/o girl who was previously healthy until 19 months ago when you gave vaginal birth under epidural anesthesia to a healthy term baby girl in a pregnancy complicated by IUGR. Since then you’ve had tingling (paresthesias) and pain mostly in your hips and shoulder, but also in your hands, feet and arms. You also have been suffering from fatigue, depression, and clumsiness. An X-ray of the cervical spine done one year ago showed several areas of subluxation. You were put on a trial of steroids and responded well. More recently in addition to the previous aforementioned symptoms you have had a combination of occipital headache, facial tingling, dizziness and vertigo associated with head positioning, and vision changes including double vision.
You have a family history of RA, hypertension and stroke. Initial lab testing by a rheumatologist (although we don’t know specifically what was ordered), was not diagnostic.
I have some more questions if that’s all right. And remember I’m not a doctor and I think your symptoms are very complex with multiple explanations and warrant an expert opinion. That said, it’s always helpful to get as much of what’s going on as possible.
Any weakness, and in particular focal weakness like a certain arm or leg?
Is your pain more burning, sharp, aching or something else?
Is your pain worse in the morning? Does it get better with activity?
Describe your vertigo. Does it feel like you’re swaying or that the room’s spinning or that you’re going to faint? Do you feel like you’re going to faint if you get up too quickly?
Do you have any trouble swallowing?
Any trouble talking?
How old were the people in your family who had stroke and high blood pressure?
Just for clarification, what symptoms did you have if any prior to or during pregnancy?
If you keep your legs together, can you bend over and touch your toes? Are you flexible or do you feel more stiff?
Everything you said about my symptoms are correct, except for the facial tingling. The tingling is intense, especially when touched, on my scalp, not my face, but there are no "goosebumps" to go along with with even though that is what it feels like. I do have `weakness that comes and goes in my right leg, but it seems more localized to my knee. The pain in my joints are a strong, intense ache. The pain throughout my body is more like a burning, which goes with the tingling, but the tingling on my scalp is new. My pain is absolutely horrible in the morning. All of my fingers are extremely swollen, along with my feet and ankles, and it takes me about 2 hours or sometimes longer to loosen up. I go to physical therapy 2 times a week and in the morning, I complete my stretches and exercises after being awake for 1 hour. My vertigo comes on when I move my head more than a couple of inches and it feels like the room is spinning and I will pass out if I don't close my eyes and sit down. It also comes on if I get up too quickly from a sitting position or if I get up too quickly from laying to sitting. I also have vomited several times after experiencing the vertigo the past few days as it has gotten worse. I do not have any trouble swallowing at all and I do not have any trouble talking either (just ask my husband lol). The high blood pressure came on for a couple of my family members in there 50's and a couple in their 30's. I started having the bad joint pain and wide spread pain, fatigue, and depression in the third trimester of my pregnancy and I just thought that it was due to the fact that I am petite and had a difficult time carrying a 6 pound baby around in my belly for weeks. I have had PFS (patella femoral syndrome) in both of my knees since I was 14 years old due to playing 4 sports for several years. I used to be incredibly active playing basketball, softball, swimming, and track.
If I keep my legs together and bend over with the intention of touching my toes, I get as far as the middle of my shins. I am not at all as flexible and agile as I used to be. I always feel stiff, but more so in the morning or after a nap.
All of this is so frustrating for me, the new symptoms and the ones Ive had since giving birth. I am only 24, I weigh 105 lbs and I have always been healthy, so when all of this stuff came on and never went away, I was in denial for a while. I just don't understand why I have to be in so much pain and be so exhausted all the time, when I should be in the prime of my life! It is so frustrating knowing that if my daughter had come along before all of this, she could have had a mom with endless energy and no pain.
I look forward to what you find out, and once again, I am so thankful for your interest in helping me figure out what I should do.
Dearest Shelton0912, I have thought long and hard about what is wrong with you and I can say with all confidence that I do not know. The complexity of your symptoms is beyond anything that I feel comfortable giving advice about. But the good news is that 1) I’m not a doctor, and 2) in my opinion you haven’t had much done in terms of diagnostic imaging. I will tell you what I have been thinking because I think it will do more good than harm. After all, you are young with 19 months of debilitating symptoms and no diagnosis. One way to arrive at a diagnosis is to have doctors start excluding things. That said, take what I’m telling you with a grain of salt. Some of this may sound scary and the worst thing I could do is make you feel like you have something horrible when you don’t. Again, I’m not a doctor and I don’t think I know what you have. This is just what came to thought.
I think the highlights are
Seronegative (RA test is normal as of now) Polyarticular (multiple joints) symmetric (I think) arthritis, involving both large and small joints, that is worse in the morning and gets better with movement. It does not involve the spine (if you did have spine pain then it would be called spondylopathy).
A transient burning pain with tingling involving the hands, upper arms, thighs and feet, again worse in the morning.
Transient right leg weakness
Subluxation of the upper cervical spine diagnosed by x-ray one year ago
Orthostatic (evident when you get up real fast) and positional vertigo, in which both you feel like the room is spinning and you are about to faint.
New onset Headache in the back of head, worse in the morning, accompanied by vision changes.
Your condition responds to prednisone.
Your condition is getting worse.
My initial impression of your symptoms was that you have a connective tissue disease, specifically one called Ehlers Danlos Syndrome (EDS). Connective tissue is sort like the support that holds the body together and patients with EDS have some defect in that support. There are several different types of EDS and clinical presentations vary tremendously. The hallmark of the most common types of EDS however is hypermobility of joints. You said you were flexible but made no mention of being double jointed. This makes it not that likely that you have this.
There are other things that for me made me think you have this. One cause of IUGR is maternal connective tissue disease, and with your baby being fine I can not think of another likely cause for that. Because of their hypermobility of joints patients with EDS often have subluxation of not only the cervical spine but other joints. For example, recurrent subluxation of the patella is more common in EDS, which you may have had to some extent as a teen.
Regardless of whether you have EDS or not, my suspicion (although by no means am I certain) is that the crux of your problems lie somewhere in the spinal cord and the base of the brain. The base of the brain as well as a part of the brain responsible for coordination called the cerebullum is held up by the upper part of the spinal. In cases where the connective tissue holding the spinal cord together is compromised (like cervical spine subluxation, possibly from EDS) the cerebellum can actually fall through or herniate through the base of the skull. This is called a Chiari 1 malformation. A Chiari 1 malformation, which I considered you might have, can cause a host of problems. One such problem is the formation of a cyst of cerebral spinal fluid (the normal fluid that surrounds the spinal cord and brain) called a syrinx. The condition is called syringomyelia. I considered syringomyelia as the cause of your intense burning pain and tingling, as well as possibly the transient leg weakness. Pain from syringomyelia is also much worse in the morning and the condition does respond to steroids. As to why this is all happened when it did, my guess is having a baby inside presses up against all kinds of nerves and cause changes in spinal pressure that made matters worse and finally noticeable.
There are two other conditions associated with Ehlers-Danlos that I felt might explain your other symptoms. I felt that your chronic fatigue and the feeling of fainting you get when you stand up too quickly could be explained by something called POTS. Lastly chronic cases of cervical subluxation can lead to compression of the blood vessels near the spinal cord and to a condition called vertebrobasilar insufficiency (VBI). In VBI, the insufficient blood flow to the brain can cause a host of symptoms including headache in the back of the head, vision changes including double vision and most prominently vertigo with changes in head position. At this point, I warn you I am making a lot of assumptions and none of this may be relevant.
In the end, I’m just not sure. There are so many conditions that can cause many of your symptoms and I don’t think it’s helpful to mention them. You never said anything about having hypermobile joints and plus the one thing I can’t explain is why you appear to have developed a seemingly classical case of rheumatoid arthritis in addition to everything else. To say it again, everything I said might be completely wrong. I also apologize if anything I’ve written is factually incorrect. And it’s silly to even think about or look at treatment for something you very well may not have. But from my perspective you’ve been having problems for a long time and have seen a doctor since at least a year ago, and it doesn’t sound like anyone has said something that useful to you. I’m not a big fan of a diagnosis of fibromyalgia. Not at least until other avenues have been adequately explored. And from personal experience, I would rather be faced with what could be wrong with me than just be stuck at I don’t know. I feel if you’re asking for help online than you feel the same way. And that’s why even if you don’t have anything I wrote about I won’t feel guilty. And I think this can give you something to look up and compare what you feel with you read and decide for yourself if you think it fits or not.
I do think that you need to see a good neurologist and as soon as you realistically can. Mention that you have a headache, changes in vision including double vision, and feelings of vertigo. Try to get your past medical records and bring them with you and write down all your symptoms so you don’t forget to leave anything out. I think that no matter what you have, the earlier you get diagnosed the better. You need a proper history taking and a full neuro exam (make sure he or she looks in your eyes) from a real doctor. There are a lot of other questions that should be asked and in my unprofessional opinion it would be helpful to have an MRI of the head and cervical spine. Good luck to you. Keep us updated. I hope I did you no harm and feel free to message me with any questions. And from the picture I must say you have a very beautiful baby.
Thank you sooooo much. I am still going to take everything you have suggested lightly, but you were absolutely correct when you said that I have obviously not gotten any helpful answers to the many debilitating symptoms that I have. I also agree with you on the subject of fibro. I think it may just be an easy and quick diagnoses for a doc. I have considered the idea that I may have Candida, not Fibromyalgia. But, again, I have not gotten any answers from the many types of doctors I have seen that sit well with me, besides the RA with which I have a ton of matching symptoms for. I have just started cutting out sugar (which is what yeast feeds on in relation to Candida) and I have also just started a Gluten free diet to see if that relieves or eliminates some of my symptoms.
I wanted to also add that I still have major issues with my knees in relation to the PFS, so it has not gone away at all, and I still have episodes of my knee cap sliding completely out of place. I still have to wear a brace on my right knee (the worst of my knees) even if I know I will be walking around the mall for more that a half hour or so.
I really appreciate you taking the time to take a look at everything going on with me and giving my a starting point (seeing a neurologist) which is something I didn't have before posting this. Please do not feel bad at all for any of your ideas and suggestion. I just appreciate your time and effort. Thank you very much and I will most definitely keep you updated as I start this process of meeting with a neurologist.
Thank you, thank you, thank you!