Does this sound like any of you? Please help

I am a 37 year old mother of a 19 year old and an 8 month old. I am hoping you may be able to give me some advice as I am at my wit's end right now. So, starting back in May, I went to the doc for a sinus infection and to back that up, the very first symptom I had was I felt the right side of my tongue "swell" and it felt like I had gone to the dentist. It was weird, and was very intermittent, but when I went to the doc, she told me everything looked fine. Well, I got on Amoxicillin and a nasal spray - good enough. Continued with a little of the tongue issue but was intermittent. One week later, I was at work and all of a sudden, it was as though someone was squeezing my forearms and I could hardly write. I was terrified. As the day progressed, it subsided but I went to the walk in in a panic. The sinus issue was still there as well. So, the doc said that the arm issue was likely something physiological related to my sinuses opening up and gave me a stronger antibiotic. By the following Wednesday - I still felt miserable so I was able to get into MY doctor. He was perplexed but felt as though I has some serious sinus stuff going on. In the meantime, I was having occasional muscle fatigue, and still the issue with my mouth. I also noticed that when I eat, it would really tug at the back of my mouth. So, I read some things online and it said to eat some sour things - and eventually the swelling on my face and in my tongue went away. My doctor gave me steroids, antibiotics and I felt great on the antibiotics for 5 days. He ran ANA, Sed rate, Vitamin D - you name it , he ran it. All came back normal except for the Vitamin D - severely deficient. So, I accepted that - he also wanted to put me on an anti anxiety med but I refused because the only thing stressing me out is not knowing what is wrong with me.

Well, I continue to have the issues with my arms, and now in my legs, the Dr. suggests possible Fibromyalgia? All I can do is imagine the worst. I have worked myself into a tailspin. I believe I have times when things flare up - 2 weeks ago, my arms turned red, and my face turned red in the T zone area every time I  ate certain things. And here I am again, the arms are red, weak, and my face feels almost sunburned, and I have diarrhea during these times - and then two nights ago, I awoke with aching thighs and they are now a little weak.  In addition, the area under my jaw on both sides is swollen and tender. I had also went to an ENT for the jaw and he had no idea - told me to see a dentist (but I swear it's my salivary glands). Can you help?? Any ideas? My PCP is hesitant to send me to the Rhuematologist with negative test results, but after everything I have read, I wonder if I have Fibromyalgia? Oh, and I am also losing weight like crazy - and they have "ran every test possible" and find nothing.

I hope to hear from you, I am so lost and miserable.

The only time I get diarrhea is during the times that I have "flares"...muscle weakness, arms red, face rash, scalp also hurts some.....I think it might also be from my nervous stomach because I panic when I start to have symptoms. I just need to know what is going on with me. Also, I have a red/purply rash just above my elbows.

Hi, Virginia, and welcome!  Well, we aren't doctors here and are guessing but I think I would try a few things and also try to relax!  Stressing causes more pain with fibro and you also seem to be so in tune with your body.  Sometimes that can be bad. 

 

One thing I would try is magnesium.  I use malic acid/magnesium supplements, aka magnesium malate.  This forum of magnesium has malic acid in it and both can help with pain and fatigue.  Magnesium is good for muscles and one of the signs of deficiency in magnesium is muscle pain and twitching.  I'm just finding all of this stuff out recently! 

 

I, too, am deficient in vitamin D so I take 5,500 IU of D3 a day.  I have done this for several years and a deficiency in D can also cause pain and fatigue.  So these two things are pretty simple to try.

 

If you see that your face gets red when eating certain foods, don't eat them!  We can develop food allergies and sensitivities at any time.  Actually any type of allergy.  I used to be able to take amoxicillin but then developed an allergy to it a few years ago.  So whenever I see that something doesn't agree with me, I avoid it and that solves part of the problem. 

 

But, I think one of the biggest problems is your anxiety over all of this.  It shows in your postings!  I've been where you are now and it isn't fun.  I was checking my body out all of the time, searching for answers, and part of my symptoms was caused by my anxiety.  Try deep breathing exercises and tension releasing exercises.  When I get stressed, I go for a walk.  It gets my mind off what I'm concerned about and puts me in a better place.  Plus, walking is a wonderful forum of gentle exercise for fibromyalgia.

 

Your PCP should refer you to a rheumatologist.  You see, they will check you for other illnesses that have the same symptoms as fibro.  There is no good test for fibro.  We usually come back normal on our testing!  But, if you come back normal for these other illnesses where the tests are accurate, then the doctor can rule out the other illnesses and a diagnosis of fibro is usually given.  So it's very normal for a fibromite to have normal testing in their blood work.

 

Be sure to read Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot there and this could help you know if it's fibro you are dealing with.  Good starting links for you are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  You just might see  yourself there!  There are links about the supplements I mentioned above and how they work in your body.  You might want to check that out, also.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine 

Dear Virginia1976

I am there with you every step of way...im 34 and mum of two living in UK and have had a lot of symptoms you are describing, except the rashes.

The twitching is major for me, especially when falling asleep and also jerking of my shoulder or leg. Most annoying. This goes in stages, i seem to have it for months and then nothing for a while. I am still not sure what causes it and am seeing a neurologist for it soon

Scalp pain is horrid...stinging all over skin, Ive had it all.

Sometimes, if i feel a symptom I try and reassure myself its just fibro and nothing more serious and then it usually passes...except my fatigue...this bit I find most debilitating

This forum is so great for making friends and sharing your woes...It has helped me immensely and I no longer feel so lonely and I look forward to my days a lot more...I still manage to work part time and look after 2 small kids and run a house..some days are so tough and I don't know how I get through them, but I always do.

I too worked myself into a tailspin and anxiety can make things worse...Im working at keeping calm to try and help my symptoms. So many people on here are able to live relatively normal lives.

You are not alone and feel free to ask any questions :o)

So, have any of you experienced numbness/tingling in your hands and feet? This happened last night and has continued today?

I am dealing with tingling down my arms and into my hands... later it gradually turned into that plus pain in my neck and down through my shoulder blades. In my case it is due to compressed nerves in my neck from twisting, turning and reaching at work with less the stellar posture - I've been seeing a physiotherapist twice a week for a while now and am getting better.

As things progressed and I started to be able to do things more (I was pretty much incapacitated) I would get a tightness in my forearms like some had a grip on me. I started doing some carpal tunnel stretches and this is helping with that.

Your nervous stomach is likely Irritable Bowel Syndrome (IBS).

The redness on your face (and chest if it's there) could be Rosacea - the flushes can be triggered by certain foods and drink (alcohol, caffeine, chocolate) as well as stressful situations, bending over, etc. but I am quite concerned that you are eating something you are allergic to (either to the food directly, or chemicals in the food) since your mouth is involved. I think it's important that you keep a food diary and completely eliminate anything you suspect until things are under control. You could see an allergist, but you could also consult a Naturopath who could help you set up an elimination diet - this is usually for gut issues (IBS, Chrohn's, Celiac's, etc.), skin breakouts and headaches - since your mouth is reacting to something, an allergist is probably best to start with. You may be reacting to several things. If you decide to test anything yourself, eliminate for a couple of weeks and assuming you have stopped having symptoms, re-introduce it for three days and see if you react making sure there's nothing else you are adding that you haven't had regularly.

You just had a baby eight months ago. Are you getting 7-9 hours of sleep every night? If not, try to have good 'sleep hygiene' as they call it - I know it's hard with a baby, but as much as possible, decide on a routine for bed and do your best to stick to. This will make everything easier to handle and may help with at least some of your symptoms.

Let us know how things are going. and lastly - you know your body best, keep going back to the doctors or ER if necessary till you find out what is going on and how to deal with them. Talk to your dr about getting two EpiPens to keep with you at all times in case you actually have a life-threatening allergy - they're a bit expensive, but money is nothing if you can't breathe. <3