Is this Fibromyalgia?? Please help

[lesley99899]

Hello all, I am new here.  I am really struggling at the moment with painful symptoms and am getting absolutely nowhere with my GP.  I suspect I have some sort of inflammatory  condition or disease, and wondered if perhaps someone might read my story and recognise anything and advise me accordingly. I wonder if I have Sjogrens, Fibro or Polymyalgia.

About a month ago, completely out of the blue  I woke up with incredibly stiff and moderately painful shoulders and upper arms.  (I knew it was not exercise induced lactic acid muscle pain - I know how that feels,  and I had done absolutely no exercise over the preceeding days - the pain just came out of nowhere.)    I found I was so stiff I could hardly get out of bed, and I could not lift my left arm above my head.  I felt like I had been hit by a lorry.   However,  by the time I was moving around the stiffness had gone within about ten minutes,  and the pain had lessened but I was aware of soreness in the muscles  all day when ever I moved or used my arms.   I thought perhaps I was getting the flu, or had a virus, or had slept awkwardly.  However,  it did not go away, and  I  have woken with this bi- lateral stiffness and pain every day since for a month.  It seems to be getting worse, spreading into all the muscles of my upper back, shoulders and arms,  but I feel it mostly in both arms biceps and deltoids.    The pain is bearable at rest - hardly noticable -  but can be excruciating if I move in a certain way - for example the other day I leaned back from the passenger seat in the car to reach something on the back seat - and the pain was enough to stop my breath for a moment - a terrible pain that shot through my upper shoulder.  I feel it is the muscles and not the joints.   I am taking maximum dose Paracetamol and Ibuprofen in the morning and this helps.    I am aware of moderate to severe pain with most arm movements such as   wrapping a towel round me, putting on and taking off anything with sleeves...driving (turning the wheel) carrying shoppping bags, holding the dog lead at arms length.  I just cannot do the simplest things without feeling pain.    I have never felt pain like it before, it is unlike any strain, or exercise induced pain I have ever felt.  It feels likethe muscle is being ripped, or twisted.
I went to my GP two weeks ago, who told me I am 'anxious', and that aches and pains are probably perimenopausal in origin (I am 50)    I am not one to argue with the doctor (yet!) and so I just took his advice about 'massage' and 'relaxation' and left.  I went back yesterday to see a female doctor,  and told her I was feeling much worse.  She examined me  thoroughly (sods law I was having a good day and my muscles although sore, were pliable enough)  and gave me a prescription for Naproxyn.    'Myalgia' of any sort was not mentioned.   I do not feel I want to bring the subject up as most doctors get defensive if you say you have looked on the internet, and try to diagnose yourself.  
I have also been thinking back over the last year or so, and realise I have experienced a host of other strange symptoms, some of which I no longer have, and some which flare up now and again.      I had painful inflamed dry skin on the inside of my nose for a very long time -  it  was very irritated and dry and extremely sore  - I used to rub on E45 with a cotton bud to try to get some relief.  I never went to the doctor with it, as I thought it was fairly minor and was just an allergy.  (This symptom has actually settled down now and I only get occasional flare ups.)   However, my eyes are also very dry -  especially when I open them in the morning - I get a slight ripping sensation as if the lids are stuck to my eyeball - which is probably exactly what is happening.  I have been to my optician who did a little test with paper, and told me I did indeed have very dry eyes, but - because  I am still producing tears -  he did not refer me on to anyone, , I was simply given Viscotears and an oily gel to place into the eye.   Around January of this year I noticed a very strange 'taste' or sensation all the time in my mouth.  I find this very hard to describe as  it is not really a 'taste'...more of a change in how my mouth feels.  The inside of my lips and tongue feel irritated and almost tingly all the time.  And this sounds comletely mad - but I have a genuine sensation of cool mint all the time, almost menthol, which I can feel on the surface of my eyeballs too.  Almost like the sensation when you open a jar of menthol rub and breathe in the vapour.   And lastly, I have a constant burning/tingling feeling on the skin of my face.  It feels like mixture of sunburn, and that irritated nerve feeling when you are getting the flu.
I hope someone can identify with anything I have said and give me some advice.  Thanks for reading.

[Neurodreamz]

I just remembered I forgot to ask. Do you have pain anywhere else, like in your hips or legs or feet? With fibromyalgia, the pain is everywhere. Also, sometimes doctors will inject cortisone to help the inflammation, but some don't because cortisone can eventually cause damage to the tissue if it's used to too much. It's instant relief, though. I had a shot for bursitis in the hips and it lasted a month without pain.

[Neurodreamz]

Hi Lesley,
I'm glad you don't have the symptoms of diabetes or shingles or GERD! I was doing some reading on a pinched nerve and it's possible to have bilateral pain. I also found out the burning feeling in your face could be also be a pinched nerve. Some people get the burning feeling instead of pain. I think taking the medication and it helping points towards some type of inflammation causing the pain and weakness. I found this website which explains it well with pictures.....

http://www.laserspineinstitute.com/back_problems/pinched_nerve/

I was thinking as you don't recall any type of lifting or other activity, it could be your spine just reached a point where the nerves pinch. This could be because of an old injury ten years ago and the verterbrae degenerate as we get older to the point of them getting closer together, then the nerve pinches. Have you ever been in a car accident, especailly one where you were rear-ended? It would have thrown you forward and caused compression in the verterbrae.

Have you had an osteoporosis test? They test the bones for the amount of decay. I think every woman over 30 needs to take some sort of calcium supplement in order to have strong bones when they get older, or at least consume lots of dairy. When chosing a calcium supplement, it's really important to balance it with Magnesium otherwise one can get sore muscles. Usually it's in a 2 to 1 ratio, Cal/Mag.

Are you comfortable going to a chiropractor? I know the ones here in Canada take x-rays and other tests to show the vertebrae misalignment. Sometimes the misalignment can be caused by having one leg slightly shorter than the other, they test for this too and sometimes recommend orthotics for the shoes. So perhaps instead of an activity pinching the nerve, it was just it's time to go. Some people, too, go to a physiotherapist for treatment, I personally found it didn't help as much as the chiropractor. I had a pinched nerve in the lower back when i took up jogging and had nerve pain in both legs right down to my toes, it resolved it in six months and I haven't had any pain since. I find physio works more on muscle repair from sports injuries and the chiropractor works on spine alignment. If you go for a bone density test, the doctor will be able to advice you on what to do to strengthen the bones.

Here's some ideas to help with the pain and inflammation:
1. Epsom salt baths, use at least 1 cup of salts. The epsom has magnesium which helps the muscles function and repair themselves. This will especially help if you take a bath before you go to bed as it may lessen the pain and weakness upon waking
2.There's gels with menthol that help relieve pain. The have them in the drugstore, but I order from iherb, much cheaper for the brands without all the chemicals. They gave me a coupon to hand out DEX579 for $5 off your first order, if would liike to use it. In any case, the gel at the drugstore is usually a cool blue gel. in iherb, if you search for "back pain menthol gel"
http://www.iherb.com/BioFreeze-Cold-Therapy-Pain-Relief-Gel-4-fl-oz-118-ml/41650
3. The other type of cream that works well for nerve pain contains cayenne pepper I didn't believe it at first then ordered some, it's amazing. I get the cream from Christopher's. Alternatively, I've read one can make it oneself by taking your usual cream and adding cayenne pepper. The only thing to be careful of is to wear an old t-shirt or a dark t-shirt as the red sometimes stains.
http://www.iherb.com/Christopher-s-Original-Formula-Cayenne-Heat-Ointment-4-fl-oz-118-ml/13992
4. Stretching exercises
http://www.livestrong.com/article/23883-pinched-nerve-shoulder-exercises/
5. cold packs or heat packs. Some get relief with cold as this reduces the inflammation, some get relief with heat as this helps the nerve pain. It depends on how you react. For either pack, keep it on 10 to 15 minutes, then take it off. With a cold pack, this not only reduces inflammation, but also after one removes it, it has the action of bringing new blood into the area and the new blood helps repair the muscle
6. For a Cal/Mag supplement, I take Calcium Citrate and Magnesium Malate. For Magnesium, it's important to avoid the type called magnesium oxide as it can cause diarrhea. Most cheap brands use the oxide. The other one I recommend if you can't find malate is magnesium glyconate. I take the Mag Malate as this version of magnesium helps Fibro pain, although Fibro pain is neuropathic pain, so it should help with your nerve irritation.
7. Sleep with a pillow between the knees helps keep the back aligned
8. Vitamin D supplement. Vitamin D is crucial and if you live in the Northern hemisphere, most people are deficient. In Canada, over half of all Canadians don't get enough Vitamin D. Not only is it helpful for cell and bone health, they're not finding it helps prevent cancer. The doctors in Canada recommend 1000 IU a day. There's a blood test to test one's level.

Now, I'm assuming it's only nerve pain, but it still could be something else. It is possible to get shingles without the rash. I would get a referral to a rheumatologist in case it's some type of arthritis. Finding a doctor for osteoporosis is trickier as many specialist treat it, even family doctors. Here's a good article to find one ...
http://www.niams.nih.gov/Health_Info/bone/Osteoporosis/find_doctor.asp

I think it's really important to find a specialist because even if this goes away, it could come back in a couple of years. You'll want to make sure your spine is healthy. My chiropractor showed me this picture of spine degeneration, it's a little spooky but it shows what can happen with age. That's why really old people start to hunch forward.  
http://www.healthyyouweb.com/Chiropractic-The-3-Phases-of-Spinal-Degeneration-p/fft134.htm

It's also good it's not a stabbing pain, that means if it is a pinched nerve, it's not in a serious state. The nerve is being irritated enough to cause pain and weakness.

Well, I hope you get some relief and it turns out to be only a pinched nerve.

If it is shingles without a rash, the only thing that can be done is to manage the pain, sometimes anti-virals,and  eat a healthy diet and perhaps take some vitamins. For shingles without a rash, there's a blood test they can do. The pain of shingles is unbearable and made one woman I know cry, so if your pain goes away with the inflammation medication, it's doubtful it's shingles.

Well, I think if you get another doctor, even a referral from your current one, it would help diagnose what is wrong. You could always make another appointment and tell your doctor it keeps coming back after the medication wears off and you're concerned about your bone density or arthritis. Is there arthritis in your family?  When a condition becomes chronic, it takes longer to recover from so I would keep pushing until you have an answer.

For the menthol taste, it's a mystery.  I wonder if it is something dental, like a dental root. Might be worth asking the dentist about. It seems a lot of people on the net have this menthol sensation and their doctors often don't have an answer to it. Do you think it could the silent type of GERD. I was reading sometimes the symptoms are sometimes not typical of GERD with the silent type, some only get a hoarse throat. I wonder if you tried something to calm the stomach acid and the menthol taste went away, would that help determine it's silent GERD? Might be worth a try and if you could replicate it a few times, you might just have your answer.

Take care and I'm glad to help as I know how frustrating it is to be dismissed by a doctor.  Let me know how it works out!

Laura

[lesley99899]

Laura, thank you so much for taking the time to post such a helpful and informative message.   I have never heard about the minty taste and diabetes - however, I have no symptoms of diabetes at all - no thirst, no needing to pee. v I am not overweight either.  it is interesting though because my elderly father has type 2 diabetes.    I might get a hold of a home testing urine kit.

I used to have GERD so I know the symptoms of that, this was treated with Lanzoprazole last year.

I have never had shingles, or anything like that - no rashes etc.

I guess it could be a pinched nerve - but would the pain be so uniform and bi lateral?   I genuinely do not remember doing anything to cause a pinched nerve.  It does not feel like that sort of pain though.... I don't know, it is an odd pain.  I don't know what to compare it to.   Today I have taken the naproxyn, and I am pain free at the moment.   When I awoke, it was pretty bad - stiffness and pain mainly in the triceps and biceps of both arms - it is a dull nagging pain like toothache, which gets worse (but not sharp stabbing) when I use the muscles.

Thank you again for being so kind.

Lesley

[Neurodreamz]

Hi Lesley,
I have severe FM and can help you out today as I'm on the couch with a low energy day. I have a couple of thoughts, but they need questions answered, if you don't mind. I have a hunch the muscle pain and weakness and the minty taste are unrelated, and are two different diseases. Perhaps that's what got the doctor's baffled as they don't fit together.

Some get the minty taste when they're becoming type 2 diabetic. Are you thirsty more than usual and have to go pee frequently?  Do you find you have to eat all the time otherwise you feel wiped out? Do you get blurry vision sometimes?  Has anyone tested you for diabetes? I don't need an answer to the next question, but if you are overweight, it can cause type 2 diabetes, some women have lost weight and they are no longer diabetic, especially true in the early stages of diabetes. The other possibility is silent acid reflux, do you get chest pain that gets worse when you're lying down? Have stomach pain after a meal?

For the pain, it sounds like a pinched nerve/herniated disc or shingles without a rash. Have you had back problems before this? Seen a chiropractor or had a spine x-ray? With the stiffness, do you get any stabbing pains or is more like a burning pain. Do you have pain anywhere else, like in your legs or hips? Have you had any rashes that look like small red blisters, especially around your mid-section or on your face? Shingles blisters are very itchy, too. The face sunburn feeling could be post-shingles neuralgia. Shingles is common when we get older as it's actually the old chicken pox virus hiding out in our nerves that gets activated when our immune system is low. Have you been sick more than usual this past year? For a pinched nerve, do your remember doing anything different the day before like lifting a box, reaching for something high, basically any activity that is out of the normal daily routine. Sometimes a pinch nerve takes overnight to feel pain as the muscle becomes inflammed around the nerve, then the inflammation causes the nerve to compress further, then you have this wicked cycle of pain. Not being able to lift your arm over your head is a hint towards a pinched nerve and not a symptom of Fibro. Did the Naproxyn help? Did any medicine help? For both shingles and pinched nerve, a massage is going to hurt, not good advice. Some get a relief from a cold pack to reduce the inflammation and give the nerve a break. If the vertebrae are misaligned, then the nerve pain will keep occurring until either a chiropractor adjusts or some get relief with stretching exercises (after the cold pack, of course!).

Dry nose... did it happen in the wintertime (I'm assuming you live in a dry cold climate), have you had any allergies? Dry skin and inflammation are also common with diabetics, but it could be allergies.

That's all I can think of for now. If you have had any other symptoms, no matter how strange, please add them, like if you're getting more headaches, or react to certain foods like a glass of wine.  Has your doctor done any blood work? From your brief description, he/she doesn't sound like a caring person, more dismissive, here's a prescription, bye!. Any chance you can change doctors? There's a site called http://www.ratemds.com/ where patients review doctors, maybe there's a better one in your area. I live in Ottawa, Ontario, Canada, so I'm not familiar with US or UK doctors.

Take care and I'm sure you'll get an answer from a doctor eventually ... I've learned with FM that one needs to keep pushing.  For now, I would try and not worry about having an autoimmune disorder or FM until you've ruled out everything else.  Sometimes it helps to get a copy of your bloodwork from your doctor to see what they're testing, and take it to your new doctor. Once we get closer to a potential diagnosis, I can suggest some natural things to help before you go back to a doctor. I'm not medically trained, but with FM have read so much in the last 12 years of being sick.

Laura