I have been diagnosed with fibromyalgia for 12 years now, and during that time I have used quite a few different medications. At first, I found that I would accept anything which had the ability to give me my old life back, or so I wished. So painkillers were my go-to standby. I had several blister packs in my bag, my pockets, and the car, all over the place for easy access. I found that actually, the pain of fibromyalgia does not go away with painkillers. It just gets more bearable. This is something that I have learned over time, certainly not what I wanted to accept at the beginning of my fibro journey. I wanted nothing less than a cure, or an absolute and utter alleviation of the pain.

Oh, how naive I was!

I had started on paracetamol at home before ever going to the doctor. Then I searched for stronger analgesics over the counter. Anything I could find that may help.  That was when I went to my doctor expecting some form of miracle. All he could advise at the time was co-codamol. It seems ridiculous to say that I have been taking an opiate-based analgesic for over 12 years on and off. Becoming addicted did worry me, however, I wanted to make my life easier to deal with. So co-codamol is very much part of my life. Luckily, it seems that I do not need to have the same number of tablets per day, it kind of waxes and wanes along with the scale of pain. 

There are several different types of pain that affect fibromyalgia patients, not all of which can be helped by opiates. 

Hyperalgesia

This is the medical term for the increased sense of pain which you feel due to Fibromyalgia. Scientists don’t fully understand this condition. They believe that the brains of people with Fibro are more sensitive to pain signals. Researchers studied more of this phenomenon, and they believe that the nervous systems of fibromyalgia sufferers were sending signals which caused the muscle tissues to remain on high alert. I have unexplained bruising on my arms and legs especially. My clothing causes pain on my skin, and in some cases, I have had wheals of red patches, oversensitive to the touch. I have tried various skin creams to try to soothe areas of irritation and pain. But creams are not the answer to the problem because the problem is way I interpret pain.

Neuropathic pain

Neuropathic pain causes odd feelings of crawling, tingling, burning, itching, or numbness in the arms and legs. In severe cases, these sensations can be painful.

I have taken Pregabalin, and Gabapentin, not both at the same time I might add. These are drugs that were primarily developed as anticonvulsants to help with epilepsy. However, it was found that they can be effective as a first-line treatment for neuropathic pain such as peripheral neuropathy. My experience with Pregabalin was that after a few years of relief of the neuropathic pain the drug stopped being as effective, and I felt that it was indeed making things worse. There is anecdotal evidence that this has occurred in other patients too, but I have not been able to find any actual research or articles to provide here. After talking with my GP she suggested that I transfer onto Gabapentin, which is a very similar drug in makeup as well as action. 

There are of course side effects with all drugs I would say, and one of the main anecdotal experiences has been weight gain. I can certainly attest to this. I have never been a slip of a girl, but I definitely became broader in the beam than I would like whilst taking Gabapentin. 

Widespread muscle pain

If you feel like you ‘always have the flu’ or that you hurt all over, you are not alone. Widespread muscle pain is a hallmark of fibromyalgia. It can seem to travel around your body for no reason, moving from area to area.  Low back pain which can spread into the buttocks and legs is my common problem. Pain and tightness across your shoulder girdle and up into your neck is particularly debilitating. All the muscle tissue which is connected to these areas has the potential to be affected by widespread pain.

A specific type of pain called Costochondritis affects the breast bone and rib cage. It can feel almost like what you would expect a heart attack to feel like and is very scary. I have had various bouts of costochondritis, and the only medication which works for me, in this case, is Tramadol. Also, I have developed a mindfulness meditation practice to help me keep calm during these episodes. Anxiety is a surefire way to worsen the pain.  Tramadol is an opiate derivative, and should not be taken at the same time as other opiates. If you have an understanding doctor, then discussing your problems should allow for a relevant and workable treatment plan to be developed.

Allodynia

Allodynia is rare, though it’s common in people with neuropathic pain.  When you’re experiencing it, you feel pain from stimuli that don’t normally cause pain. For example, lightly touching your skin or brushing your hair might feel painful. Personally I haven’t been to the hairdressers for some years, as I can not stand my hair to be combed or brushed by anyone other than myself.

There are three types of allodynia:

  • Tactile (static) allodynia: a severe sensation of pain
  • Thermal allodynia: a change in temperature that causes pain, such as a change in the weather, or a small drop of cold water that results in significant discomfort
  • Mechanical (dynamic) allodynia: a painful sensation that occurs when a person is affected by typically harmless stimuli moving across the skin, such as a light touch.

Depending on the underlying cause of your allodynia, you might experience other symptoms too.  For example, if it’s caused by fibromyalgia you might also experience:

  • anxiety
  • depression
  • concentration issues
  • trouble sleeping
  • fatigue

Headache

Headache is a common symptom of fibro. If you have issues with pain across the shoulder girdle and collar bone the tension in the muscles can lead to frequent headaches.

TMJ Pain

The temporomandibular joints connect your jaw to your skull. They’re stabilized by muscles and ligaments that open and close your mouth. Pain or tenderness in or around the joints is referred to as a TMJ disorder.

Temporomandibular joint disorder (TMJ) causes jaw pain, and people with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) tend to struggle with TMJ more than those without these conditions.

Abdominal/Pelvic pain

Nearly half of people with fibromyalgia are also diagnosed with irritable bowel syndrome (IBS). This is a digestive disorder that causes cramping, belly pain, constipation, diarrhea, and nausea. Besides abdominal pain, women with fibromyalgia may have pelvic pain due to bladder pain.19 This can cause an increased urge to pee or frequent peeing.

Acid reflux is another digestive disorder common among people with fibromyalgia. This occurs when stomach acid flows back up the tube connecting your stomach and mouth.

 

I am sure that out of any congregation of folk with the lived experience of fibromyalgia there will be lots of comments about particular pains and difficulties. 

Not everyone will have the same issues. For example my neighbour has fibromyalgia but does not have the fatigue so they are able to hold down a full time job. It is a few years now since I had full time employment, but I can manage to undertake jobs if i can be flexible with my time.

I hope that this has helped some of you who may be newly diagnosed, who were looking for the facts and information to go forward on your fibromyalgia journey.

 

Eileen