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Patients Fibromyalgia

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Carenity Member • Community manager
Posted on

Fibromyalgia and Chronic Pain

On the occasion of the World Day Against Pain on the 15th October, Carenity offers a week of publications dedicated to the fight against chronic pain. Today, we are interested in fibromyalgia, a painful and unknown disease.

pain

What is fibromyalgia?

Fibromyalgia is a chronic disease whose symptoms are mostly composed of intense muscle pain. These pains mainly affect the symmetrical muscle areas near the spine, such as the neck, shoulders, inter-scapular region (between the shoulders), shoulder blades, lower back and hips. The American College of Rheumatology states that fibromyalgia is characterised by at least three months of pain on at least 11 of the 18 characteristic body points of the disease, some of which are listed above. This definition can help diagnosis but is not satisfactory because it does not cover the reality for all patients.

>> Discover the symptoms of fibromyalgia <<   

An illness difficult to diagnose

Fibromyalgia is not easily diagnosed: it looks like other diseases such as rheumatoid arthritis, ankylosing spondylitis, chronic fatigue, irritable bowel syndrome, migraines or even psychological difficulties. Many people find themselves in a situation of not even knowing if they are affected or being diagnosed with a different condition.

Difficulties to maintain a fulfilling professional life

The patients know it only too well: it is often very complicated for your work colleagues to understand why you are missing work at times. We asked some members of Carenity and @Hidden username has stated that they feel, “the real struggle is to get others to understand the condition and the consequences it has for me.” The questioning from colleagues is also exhausting, “Some days I am on crutches, and I feel I have to justify why I need them and it’s exhausting dealing with the onslaught of questions that come with using them

A lack of understanding exists around fibromyalgia which can impact patients mentally as they feel people don’t believe them.

Various symptoms and multiple treatments

In addition to the muscular pains associated with the disease, some members of Carenity have also shared symptoms such as @Hidden username, “acid reflux, migraines and hiatus hernia”. This is one of the reasons that it is so hard to diagnose and pinpoint, the symptoms can differ from patient to patient and can have a fluctuating severity.

Check out our discussions on the forum dedicated to fibromyalgia, including the group on the daily realities of our members.

And most importantly, share your experience!


Beginning of the discussion - 10/30/18

Fibromyalgia and Chronic Pain
1

Carenity Member
Posted on

I was diagnosed with fibromyalgia after the death of my Mother in 2010 my rheumatologist thinks it was the shock of loosing my mum that set my fibromyalgia off.  I suffer with very very bad pain in all my muscles and nerve endings then this sets off lots of different ailments .....                     headaches.  Sclerosis. No smell.            No taste.dry mouth. Very sore mouth. Rotting gums/crumbling teeth. Upset stomach. Constipation.    Urine infections. Hot sweats. To name a few.      I take lots of hot baths which helps the pain slightly but then I am worn out . I am also on lots of medication. 

Fibromyalgia and Chronic Pain
Carenity Member • Community manager
Posted on

@Hidden username‍ I am sorry to hear about the pain you'r going through. There are a lot of interesting articles and discussions on the fibro forum, so please don't hesitate to reach out in making discussions or contacting other members who are suffering too.

We recently published some very helpful articles about pain management, such as our article about apps to help you manage pain. We also have another forum that is linked directly towards pain, called "living with chronic pain", which I recommend you subscribe to. 

If you are on a lot of medication then i recommend that you use our medication tracker, this way you can see other opinions on medication and track your own. Just follow this link.

Please don't hesitate to message me if you have any questons at all or if you would be interested in doing a testimonial :) 

 

 

Fibromyalgia and Chronic Pain
1

Carenity Member
Posted on

I've been diagnosed with fibromyalgia since 2008 and have gone from a high level of pain to a severe level of pain  Recently the pain in my hips has got worse and I now struggle to get around more than usual  I have even had to get a wheelchair for days when the pain is at its worst  the only problem with that is my arms aren't strong enough to push myself along properly so I am having to rely on others to push me. I am on a lot of medication for the pain too, but it doesn't always help and I get quite low about not being able to do the kinds of things I used to do  which really upsets me sometimes.

Fibromyalgia and Chronic Pain
Carenity Member • Community manager
Posted on

@Hidden username Hello,

I am sorry to hear that you're in so much pain :( It can be difficult to manage being in pain daily, I hope that Carenity has been a form of support for you as many of our members feel this way too.

You can find some interesting articles and discussions about dealing with daily pain by checking out our "living with chronic pain" forum. You could find some helpful resources there on pain management or just chatting to other members who are in pain.

I hope this helps, don't forget that you're never alone!

Fibromyalgia and Chronic Pain
Carenity Member
Posted on

Now to make things a little more complicated I've been diagnosed with carpel tunnel syndrome and it's been aggravated by us moving our property into our new house. We had a lot of lifting and carrying to do and I took on a lot of it as my husband cannot walk very well  So now I'm trying to unpack things and put them in the right place with only one usable hand 

Fibromyalgia and Chronic Pain
Carenity Member
Posted on

Iv been diagnosed by a rheumatologist about 5/6 years ago now,It really hasn’t got any better ,I use matrifin 3 day patches ,take amatriptaline 2 at night ,I’m really struggling with sleep as many others do but I don’t sleep all night ever then every few weeks I have to sleep for 48 hours on and off can not do any thing at all I’m so so tired my gp says he’s baffled and sending me to a neurologist,but there’s a 13 weeks waiting list ,has any body else seen a neurologist ?has any body else been or going threw this,?its doing my head in now,I’m either tired that much I’m in bed 48 hrs or stiff I carnt move.sorry for going on regards kaz xxx

Fibromyalgia and Chronic Pain
Carenity Member
Posted on

Hi kaz x are you not sleeping because your in to much pain x

Fibromyalgia and Chronic Pain
Carenity Member
Posted on

My opinion is that LDN is the best treatment for Fibro. On average it reduces pain by 30% but it varies from no response to very good response. Look at the American website at www.lowdosenaltrexone.org. for a lot of                  information. It works for over 200 conditions.