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My sister has Firbromyalgia........
5 Replies
Ribbons - August 20

We are in the uk.
I will keep this brief because an annoying ad is distracting me.
She needs her GP to refer her to a Consultant or Specialist. What medical category does Fibromyalgia come under pls?
This site gave an excellent list of symptoms and she ticked just about every single box. There is a strong presence of ADHD in our family and many symptoms overlap but my sister very clearly cannot function without high dose pain relief on a good day.
I am getting off topic. Which department deals with diagnosing Fibromyalgia?
Thanks folks.
Ribbons.xx.

 

Fantod - August 21

The best doctor to address Fibromyalgia would be a rheumotologist. Take care.

 

Ribbons - August 22

Thank you so much Fantod. Thats extremely helpful because my sisters gp is useless and dismissive. Her employers are blatently abusive, even when given clear direction from doctors regarding her limitations and she is in constant unbearable pain.
You have provided valuable information to help her. Thanks.
Ribbons.xx.

 

Ecw - August 22

Hi there, I'm based in the UK too.My GP diagnosed fibromyalgia but never referred me to a reumathologist.Instead he did his own diagnose, told me that I should educate myself to the sympthoms and ways of dealing with it, and sent me off. As i am italian and my mum also lives with FMS, I went back home to see a reumathologist & confirm the condition.He used the traditional pressure point method.
Don't be disheartened if you find that there isn't much understanding of the illness.After 5 years of been diagnosed, I only see the doctor if a completely new symptom has popped up. The trouble is- most doctors don't know how many sysmptoms FM can cause, and so they will send you off to do tests looking for God knows what, when most likely than not IT IS just another symptom of FM.
The key for your sister is to learn as much as she can about it . This will potentially help her manage the illness without having to see ignorant doctors that can cause her needless frustration.
I know this post might sound depressing, but FM
is not understood and going from one doctor to the other feeling like your are hitting a wall each time an cause so much upset that it could lead to depression... so by all means go to see a reumathologist with FM experience.He will help her find the right pain management course. But don't expect a full understanding of the illness from him /her because they truly know very little about it.
Let us know how she gets on.

 

Fantod - August 22

Ribbons - Here is a crash course on Fibromyalgia (FMS).

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 USA by the National Arthritis Foundation, the World Health Organization and the Centers for Disease Control. Over the counter remedies do not work for the type of pain associated with FMS. Your sister would only be damaging her 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.

If you don't want to share this website with your family and friends to get them on board, there are a couple of other options. Go to the National Arthritis Foundation web site 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. Your sister is going to have to learn to ask for help, stand her ground, say 'No" and mean it and not feel guilty about it. And, most importantly, be grateful for everything that she can do as opposed to dwelling on the losses.

As you now know, a rheumatologist is the doctor best suited to help your sister manage her symptoms and rule out other causes for her illness. A gp does not have that level of skill. There are now three prescribed medications to treat the pain of FMS in the USA. Lyrica is one 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 (also known as Milnacipran - the rheumotologist should recognise this name) was approved for use in the USA by the FDA last year. 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 also want to consider finding your sister a pain specialist with an interest in FMS. I have a rheumatologist and a pain specialist. I am aware that in the UK, Fibromyalgia is not widely acknowledged or treated. To some degree, we have the same problem here in the USA but a wider range of choices when it comes to doctors. You'll just have to keep looking until you find someone willing to treat her properly. Google may be a good tool to use. Google your metro area and fibromyalgia and see what pops up. When dealing with this syndrome, you have to be your own best advocate.

Have your sister 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 she 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 your sister is 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. She should be on a sleep aid like Amitriptyline to help with this issue.

Muscle twitching and cramping can be helped with Malic Acid (tablet) which you can find at any decent health food store. It is very common for people with FMS to have overactive muscles even when they are completely at rest. Make sure you understand how to use the Malic Acid and any risks associated with taking it.

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 your sister uses anything containing an artificial sweetener, get rid of it. If she requires a sweetener, use something made from the nontoxic Stevia plant. You should be able to find Stevia at a health food store or order it online. Avoid deep fried food, lunchmeat and wine (nitrates) as they will probably increase her 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. Your sister can still do many of the same things but she has to think outside the box. Break tasks down into more manageable increments. Get plenty of rest, watch her 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, you are not alone. This is a great site for support, information, to ask questions and just vent. I hope that my comments are helpful to you in some way. Take care and God Bless.

 

Stacey373 - August 22

Hi Ribbons - I just wanted to add that being supportive to your sister is also very important. Obviously you are already doing that by being on here to get information and help for her.

One of the hardest things we Fibro sufferers have to deal with is our friends and family not understanding what we go through on a daily basis. It's heart breaking to know your family and friends are looking at you like you are just being lazy or a hypochondriac or all those other things they always seem to think! Especially when they see you up and doing stuff one day (and feeling pretty darn good) and then the next day you can barely get out of bed, much less anything else.

Anyways...Just wanted to say that everyone around your sister needs to make sure they are being supportive and understanding...even if they might not completely understand what's going on with her. I appreciate you being the one on here looking for help for her. It's so good to see a family member as supportive as you are.

Maybe you should give your sister this website address and have her get on here so she can talk to other people who are going through some of the same things as her. This forum makes us all feel a little bit less alone and little more positive each day. You have no idea how many of us were "saved" when we finally found this forum and the people on here are probably the best I've ever met and talked to!

I hope your sister finds the help she needs and a doctor who is willing to help her. it sounds like that is a hard thing to find where you live. I wish you both the best and Take Care, Stacey :o)

 

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