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karens - August 23

hi all. i have only logged in today and never put anything up before so bear with me please. i was diagnosed with fibromyalgia in march by my gp, having moved gp numerous times as no-one seemed to know what was causing my pains, fatigue, dizziness etc. there do not appear to be many doctors near where i live that know about fibromyalgia or can help me with it or answer my questions although i find this website and the forums very useful. i was wondering if anyone could help me with the following query. i suffer from pains in my arms, legs and neck, dizzy spells, fatigue in the evenings and often my arms feel like dead weights and my neck is unbareable however, over the past few days my throat feels swollen and uncomfortable when i eat or drink and also after i eat as though something is caught in it. i have been advised that this is a symptom but i cannot find it referred to anywhere as a symptom, is anyone aware of this or do they suffere with this and if so is there anything i can do? also i was put on amitriptyline tablets to take before i go to bed, these are anti-depressants although i do not feel depressed, is this normal? many thanks in advance for any advice, help or suggestions. karen

 

Fantod - August 23

Hi karens and welcome to the board!

I'm going to give you a crash course on Fibromyalgia (FMS) so that you have a better understanding of what is happening to your body.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. FMS is recognized in the USA by the National Arthritis Foundation and the Centers for Disease Control and The World Health Organization. Over the counter remedies like Tylenol do not work for the type of pain associated with FMS. You would only be damaging your liver and stomach.

This website has some of the most comprehensive information about FMS on the Internet. Take some time to read through all of the information contained in the blue boxes on the left-hand side of the website page. There is excellent concise information on FMS and the many "perks" that can be associated with it. The “perks” include Restless Leg Syndrome, Raynauds, GERD and a host of other conditions. You should also read through the posts to learn about what other people experience and how they deal with it. I think that the key is to become educated as possible about FMS. Knowledge is power.

It is normal to be in denial after this diagnosis. There is a grieving process that goes along with learning to live with a chronic illness like FMS. If you find that you can not work your way out of it in a reasonable amount of time, please consider seeing a counselor for extra support. Many of us, me included see someone and find it extremely helpful. You should try and find someone who has experience in treating chronic illness patients.

If you don't want to share this website with your husband, family and friends to get them on board, there are a couple of other options. Go to the National Arthritis Foundation website and use the "search" function to find the information on FMS. Send the link to friends and family. Go online to Amazon and purchase "Fibromyalgia for Dummies." It will have good basic information like any of the other books in the Dummies series. Read it yourself and pass it around.

It is very common for people with FMS to have friends and family who refuse to accept the limitations placed on a person who has this syndrome. Pain is subjective. For some people, if they can not see it, the problem must not exist. You are going to have to learn to ask for help, stand your ground, say 'No" and mean it and not feel guilty about it. And, most importantly, be grateful for everything that you can do as opposed to dwelling on the losses.

A rheumatologist is the doctor best suited to help you manage your symptoms. There are now three prescribed medications in the USA to treat the pain of FMS. Lrycia is one of them. The most common complaint about Lyrica seems to be rapid weight gain. Unfortunately, many rheumatologists are not proactive about changing medication when this problem becomes apparent. The second option is Cymbalata which is an antidepressant. Cymbalata addresses both the pain and depression that usually accompanies FMS. I use that myself and have had good results. The newest medication has been used in Europe for decades. Savella was approved for use in the USA by the FDA last year. Your doctor should recognise the name "milnacipran." Many people seem to have good results with it. It takes time and a lot of tinkering to find the right dosage and medications to make you feel more comfortable. You might want to consider finding a pain specialist with an interest in FMS. I have a rheumatologist and a pain specialist.

Have you been tested for a vitamin D deficiency? This is done with a simple blood test. Many people with FMS are deficient in vitamin D. I'd also like to suggest that you be tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be gluten sensitive without having Celiac Disease. Either of these issues can also cause widespread pain.

One of the reasons you are so sore and tired is a lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the day’s activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Restoring some level of deep sleep is a crucial part of treating FMS. You should be on a sleep aid like Amitriptyline to help with this issue.

Some people with FMS are very sensitive to touch. This is called “Allydonia.” Pressure from clothing, bra straps, watchbands and anything that touches the skin may be uncomfortable. There is no solution to this issue other than to find clothing that feels comfortable. I have Allydonia but some days I am less sensitive and can wear whatever I want. Other days, I stand in my closet wishing that my nightdress was appropriate day wear out in public.

With regards to diet, if you use anything containing an artificial sweetener, get rid of it. If you require a sweetener, use Stevia which is nontoxic. You should be able to find it in a health food store or order it online. Avoid deep fried food, lunchmeat and wine (nitrates) as they will probably increase your pain level too.

The key to living with FMS is learning to pace yourself. If you overdo anything, the payback can take days or even weeks to get over. You can still do many of the same things but you have to think outside the box. Break tasks down into more manageable increments. Get plenty of rest, watch your diet and eat high protein to prevent huge energy swings. If I have an event that I want to attend, I "save up" energy by reducing other activities. Even then, I may have to curtail my participation. But, in my estimation, something is better than nothing.

And finally, your throat problems could be as a result of silent GERD or post nasal drip which is creating a low level infection. FMS is an auto immune disorder and as such we are subject to all kinds of niggling problems. There is also the possiblity that you have developed trigger points in your neck which are contributing to your throat issues. I'd also investigate Myofacial pain as another cause. In any event, I think that it can be attributed to FMS. Try moist heat on your neck and perhaps a good sports cream to see if that give you any relief. If your sore trhoat persists, go back to the doctor.

I know that all of this information is a lot to take in. If nothing else, I would asking your doctor about Milnacipran as a treatment option. Also Google your metro area and fibromyalgia and see what pops up. Good luck to you and God Bless.

 

karens - August 23

fantod - many thanks for your post it was very helpful and informative. i will most definitely take your advice. kind regards. karen.

 

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