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please help me! i've reached a dead end!
9 Replies
Haya - June 5

Good Day,

Thank you for your help to all the Fibromyalgia patients around the world, through your website I came to know more and more about the disease and its effect. As I've experiencing the same symptoms and having so much pain without anyone knowing what it is about, it was very helpful to know that maybe Fibromyalgia is what is causing it.

I wonder if you could help me with one aspect, I've been having most of symptoms that is:

1. Widespread pain: All through my body, shoulders, neck, low back, and hips.
2. Tingling of the skin: sometimes it can be so itchy that I can’t stop scratching it.
3. Prolonged muscle spasms
4. Weakness in the limbs: in some days I can't even walk.
5. Palpitations: this happened long ago, starting from 6 months ago but after doing some tests the doctors told me it was nothing and maybe just anxiety. I'm still having palpitation.
6. Chronic sleep disturbances: for the past 3 weeks most of the nights I couldn't sleep because of the pain.
7. Stress: so many events happening recently in my life led to a huge amount of stress and now I seem not handle any small amount of stress.
8. Poly-modal sensitivity: this started 3 months ago together with palpitation, as I have read that it’s "having heightened sensitivity of the nociceptive system, which senses pressure, heat, cold, electrical and chemical stimulation." Which is exactly how I felt.

I have to mention that I'm a 40 years old female, I'm sick with systemic lupus erythematosus which I have read in the web that 20–30% of patients with it suffer from Fibromyalgia. Also I have Hypothyroidism (Inactive thyroid ). I'm on medication which are:

1.Euthyroxine 150 mg for the Hypothyroidism
2.Hydroxychloroquine 200mg for the systemic lupus erythematosus.

I also take Vitamin D2 50,000IU (1.25 mg) once a week, and for the symptoms I'm having now which I have mentioned my doctor gave me Lyrica 75mg for the morning and 150mg for the night, also a pain killer Mobic 15mg once a day.

What I want to ask about is how can I make sure I have it? What tests can I have? I have already had MRI for the back and my doctor said everything is fine, and I'm still going to my doctor for my two mentioned above sicknesses which I'm stable in.

If I'm having the sickness could you please recommend a hospital specialized that I can go to, price and place is not important, suggest any good hospital or doctor you know no matter where they are and i'll go, i can't endure the pain anymore!

Thank you so much for your effort, I hope you answer my e-mail as soon as possible and help me.

Lulwa Al-Noaimi


Haya - June 5

Just to mention that I have more than enough money to go anywhere in the world, so please if you know a good hospital anywhere just tell me and help me, I've read Sweden have good doctor but I dunno.

Waiting for your reply!


kvc33 - June 7

Dear friend, I don't know of anywhere in the world where you can go and get cured. It doesn't work that way. The medical community still doesn't know what causes fibromyalgia. There are centers that specialize in treating it but the one I know of isn't any more successful at treating it than anyone else. There is no real test to prove that you have fibro. A diagnosis is made by ruling out other health conditions. Some doctors press on 18 specific spots on the body called tender points to see how many the person has. If 11 spots or more are painful it helps the doctor to believe that the patient may have fibromyalgia. Generally speaking doctors give fibro patients medication to help them sleep better and something for pain control. You can try changing your diet as that helps some people. Stay away from sugar, dairy and gluten which is found in wheat, rye and barley. Learn stress reduction methods such as deep breathing. Gentle stretching and short walks may also help you.


Pikespeak - June 10

I had other health issues while taking Lyrica. I am now on Savella (a similar drug) with less side effects (for me). I too have palpitations (for no apparent reason), pain that wakes me from my sleep, and sensitivity to hot and cold weather. I also have a heightened sensitivity to various smells and loud noises. We truly understand your issues here! Please write again!


joeboy - June 10

well....There is only so much that any hospital or doctor can do for you. There is an excellent doctor in california. his name is daniel j wallace. He has a webpage and i sin beverly hills. UCLA is also there and they have excellent facilities. where are you located? as for sleep disturbances, break the cycle with a round of temazipam (restoril). 15 or 30 mg. This will definitely make you sleep but it is a short term solution. Also, ambien is very helpful. DONT take them together. I have never had luck with trazadone but some people have. Your symptoms do sound like fibro and the sleep problems are not necessarily due just to the pain. Unfortunately, i have learned that there is NO quick fix for this illness. The more you can move around the better; even if you feel like you cant get out of bed, make yourself; this disease is a mind game; very real pain but triggered by problems in your brain, not your muscles. good luck


January - June 10

Are you sure you should be taking all that D2?? Usually it is D3 (cholecaciferol) that is prescribed to help with pain, and at the high levels you are taking. (Maybe you made a typo..)

If you're having palpitations, tell your doctor - your thyroid medicine may be a little too high. Also, palpitations can sometimes be linked to an increased cortisol level - have you had a blood test for this? Sometimes a drug for anxiety can help you with sleep and anxiety. I prefer the older drugs that have a long track record. I've read that Xanax can be troublesome because it's short acting. Something like Ativan or Valium is more long acting. Try to take a very small amount of these drugs and made sure your doctor is monitoring you for side effects and interactions.

There really is no scientific test to diagnose fibromyalgia. It's a clinical decision made by the doctor after he rules out other diseases. There is currently no standard treatment, everyone is different in terms of what works for them. We are the fore-runners of "personalized medicine" I think! I'd suggest treating the most troublesome symptoms with drugs that target those symptoms. For most of us the major problems are pain and sleep. Once you are sleeping better and feeling less pain, you should start feeling better.

I had much relief by going on a gluten free diet. Many of us suffer from food allergies, so if you can be tested for that, you might be able to relieve some symptoms by cleaning up your diet. There are also a lot of theories that fibromyalgia is linked to infectious diseases - you can google "viral bacterial diseases fibromyalgia" and read about this. Some people think Lyme Disease is linked to fibromyalgia, for example.

I know it is very frustrating and painful. You have to listen to your body and advocate for yourself. Be careful with the drugs, as many of them cause additional problems. You might want to keep a diary so you know what you have taken, and how your body responds. Take a good multivitamin and mineral supplement, with your doctor's supervision. You might want to try herbs to support your immune system, but since you have extra health problems, be very careful and run everything by your doctor.

Please don't get discouraged. Most of us can find something that helps - even a little help is good. It took me 2 decades to discover that I am allergic to gluten! That diet really helped me. We just have to do our own research sometimes.


January - June 10

Haya - please google this:

"celiac disease and fibromyalgia"

One of my favorite websites is Dangerous Grains. There is a book out by the same name, that helped me understand celiac disease. I always say it is written by James Braly, but he had a coauthor, Dr. Ron Hoggan, and apparently he runs the website now.

There are a lot of good websites with information about the similar symptoms of fibro and celiac (or gluten allergy). It is controversial. Some people agree, some don't.

All I can say is a very strict gluten free diet helped me a lot. I still have pain from old back injuries. And I still get tired. But I am so much better than before! I no longer take Cymbalta (which made me very, very sick!)

I think our entire food supply is "broken" - we no longer regularly eat healthy, fresh food. Most of it is contaminated with pesticides. Our water is contaminated with all kinds of drugs. Our ancestors ate FRESH food, with the life still in it. Most of our food is frozen, canned, or worse, packaged with chemicals to preserve it. As someone recently said - if it doesn't rot in a day or two, it's not real food. I think we are all suffering from malnutrition - and nobody knows all the vitamins and nutrients we are missing. They keep discovering new ones.


axxie - June 15

Haya don't need to go anywhere,you've answered yourself with #1 and #2, is the problem and please stop taking D2 it doesn't do anything for you at, instead get D3 and don't take too much of it.

How are you taking your thyroid medication, you know if you take it on an empty stomach and you don't take any other medication until two hours has passed and don't take it with milk, drink orange juice.

pain medication is taken at night to help you relax, as for Lyrica it can be taken during the day but make sure you wait at least two hours after you've taken your thyroid.

I wake in the morning after I brush my teeth I take my thyroid, get dress. Same routine everyday I won't eat until two hours has passed make sure no milk or milk byproduct a few hours later take #2 have some breakfast and take your lyrica always at the same time lets say noon or later, as for the pain med, when you go to bed.
Drink plenty of water, watch what you eat, a few weeks will go buy you may see a difference in your symptoms.
As for the doctor you have she is fine and doing everything for you. No sense to travel the world, sometimes it's the way we eat and what we eat and when we take our meds.


Haya - June 18

Thank you all so much for your reply, I'm sorry I didn't reply to you earlier. First of all the patient I was talking about above is my mum (Lulwa) and I'm her daughter (Haya). I'm sorry if I got you all confused but I just copy\ paset-ed the letter I wrote to the Fibromolgya institution in Geneva and forgot to change it so it would be from me to you guys about my mum.

Yes I've read more about Fibro and as you said you Can't know for sure. we are going to a Neurologist and I hope I can find some final answers. Thank you so much.

Thank you so much I can surly see that my Mum Is not alone in this. This used to drive her crazy but now she is trying to cope with it.

WOW! You don't know how much of help you were. I'm located in Doha-Qata that's in the Middle East near Dubai, currently I've heard of a good Neurologist in Riyahd KSA but might go to Germany next month, not sure! Thank you so much for your reply.

Hi, yes I'm sure she is taking a D2, and about the blood test i think we shall ask for a new one next time we go to the doctor and check for that!
I've asked all the doctors we've been too about Fibro and some thought it might be it but they don't want to take it for sure until we see a Neurologist and that's our next step. About the diet I've noticed that about my Mum, and I think she having some allergy to some kind of food because the pain increase so much when she have launch and sleep, she cam;t even continue her sleep unlike nigh , the problem is I don't know what yet! Now that you've mentioned it I'll tell her and ask her to have a test as soon as possible!
Yeah I know it can be depressing for all of us but we are trying to keep her happy although she rarely smile these days, she can’t stand anything, my dad, us, even the maids matters or the house, she is trying her best though and I'm trying to take control f everything and just let her rest. We all understand her situation and thankfully we are a big family and everyone is supportive so I think that's making her feel happy. But the thing is she is sick of the pain without knowing what's the cause, she cries more than usual and would fight with everyone, I totally understand that it's ok and what she is going through isn't easy but it's killing me to see her this way without having any power to do anything.

And thank you for the website you gave me I'll google it right away and it's true about the food especially here where I come from most of the food is so not fresh!

Thanks again you were of so much help!

Hello! I didn’t know this about the Thyroid medications! I'm pretty close with my Mum so I know exactly what she takes and how much she takes from it, but about the 2 hours milk-free that I didn't know! I should tell her about it and I promise we'll do it! As for lyrica and pain med my Mum is taking'em now like you said.
Thank you so very much!

Thanks all again! You were of so much help to me and my Mum, I'll write again enshallah and let's all be positive! :) so much love!


January - June 18

Haya - glad you got some answers here I do believe it is D3 (cholecalciferol) that should be used for pain, and not D2. The literature states it can be used in doses as high as 10,000 units a day in certain cases. Rarely, a dr. will suggest 50,000 units, but only for short term use. Your dr. can advise you on this.

As you mentioned your mum is on Lyrica - please be aware that Lyrica works well for some people, but causes bad side effects in others. I have found a good website. We can't post URLs here. But put in 3 w's, then type patientsville and add the com. At this site, you can research many side effects for many drugs. In SOME people Lyrica can cause more pain. I read somewhere that it only works for about 40% of the people who take it. It's important to research (for yourself) any kind of prescription drug or supplement your mum is taking. Just be aware of the possible side effects and also, talk with your pharmacist. Sometimes you think you are sick, but it's really the drug causing it.

Wishing you the best.



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