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HOW TO GET THE BEST TREATMENT FOR FIBROMYALGIA…

With still an alarming number of GP’s poo pooing the symptoms of Fibromyalgia it is important that you know how to get the best treatment for it.

News 800 recently wrote an article on this saying that the first step in this process is to arm yourself with the facts. Fibromyalgia is a real disorder. The American College of Rheumatology created criteria in 1990 and 2010 that doctors have used for research studies and in clinical practice. A 2016 revision of the criteria is the most recent effort to improve on these and includes three characteristic features:

  • Significant and widespread pain
  • Severe symptoms (such as fatigue or “brain fog”) present for at least three months
  • No other clear explanation for these symptoms

Fibromyalgia often coexists with mental health conditions such as anxiety and depression, but it is not caused by mental illness.  Fibromyalgia is not “in your head,” but it is likely related to abnormal brain function. Differences in how the brain processes pain can be seen on functional MRI scans of people with fibromyalgia.

Standard approaches to treating fibromyalgia include patient education, exercise, treatment of other conditions that may contribute to symptoms (such as depression or sleep apnea) and medications.

The American FDA has approved three drugs specifically for treating fibromyalgia, including pregabalin (Lyrica), duloxetine (Cymbalta) and milnacipran (Savella). However, other medications, such as amitriptyline (Elavil), cyclobenzaprine (Flexeril) or gabapentin (Neurontin) are usually considered first-line treatments. Each of these drugs is prescribed for other conditions, such as depression or nerve pain.

So now you know the facts its time to decide who you are going to see. You will have to start with your GP but if you have heard yours does not seem to understand your condition then you can just book an appointment with another GP. The first port of call after that is to see a Rheumatologist who specialises in this type of condition.

The National Fibromyalgia Association website (America) and the UK one lists support groups in each area that can help you make these initial connections. The organization can also provide a list of “fibro friendly” doctors in your area. There are also lots of groups online you could join and ask someone near you who they would recommend. If you get a name of a Rheumatologist before you see your GP then you can request the one you want.

Keep a diary to take to the appointment with your GP of all your symptoms and when they come and what helps and what does not help it. The more you have written down the easier it is for the GP to understand. Finding the right specialist to look after you can dramatically impact on your pain and symptoms.

When I was living back in the Midlands it was a Rheumatologist who diagnosed me properly after a spinal consultant had asked me to write a diary of my pain and he was sure that it wasn’t all spine related but also Fibromyalgia. I was then referred to a pain specialist. He was my first port of call whenever I needed him. If I had a flare up he would always fit me in. He kept me relatively pain free with the right medication and different types of steroid injections and he also had me referred to a Professor of Medicine who looked after what medication I took. This made a big difference to my life and I felt in control of my pain.

Since moving down south I had to start again and my pain consultant in the Midlands wrote a letter to my new GP in the south so that I could be referred straight away to a Pain Clinic down here. The pain clinic here was totally different to the one in the Midlands and they first wanted me to go off all my medication as they were convinced a lot of my problems were side effects from them. They then sent me for a bone scan and blood tests as they felt I might be low in Vitamin D which would not help the situation.

I must admit I was a bit unsure about coming off all my medication but I decided it would probably do me good to have a change and slowly came off my opioids but just cut down on the rest of my medication. I felt so different after coming off the opioids that I made a conscious decision I would try to live without them.

Then Covid-19 hit so I had no further dealings with the pain clinic but did get a scan and they found I had osteopenia and I was low in Vitamin D so I was put on some medication to sort this out. However, the spinal and fibromyalgia pain was starting to get worse and worse so I ended up seeing a consultant through my insurance company who sent me for an MRI where they found that I also had arthritis in both my sacroiliac joints. He then referred me for a steroid injection for it. The difference was amazing and I was told I could have them every four months. I was absolutely delighted.

Four months down the line and I was ready for a top up but my insurance company decided they would not cover me for the injections any more as they were classed as a treatment for a chronic condition which my arthritis would be. So, it was back to square one again in the hope that I could get the pain team to maybe refer me to someone for the injections.

However, because of Covid-19 everything stopped in the pain clinics so now the waiting list is endless and I just have a telephone appointment for the middle of May. I knew I would not be able to manage until then unless I started taking the opioids again which I really didn’t want to do so I decided I would pay for the injections myself so I could get back in control of my pain again.

It is so essential that you get the right team set up to look after you when you are in chronic pain in order to be able to enjoy life the best you can. Just little delays and slip ups like my recent ones can set you back months. Pacing and planning have been my mantra for a long time now so that I can enjoy special times with my family without being in too much pain, but without help with injections and drugs I know I would be a terrible mess.

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