Would you like a little more? A little more what? Illness, treatment, insight, gratitude? I often had this feeling of being overwhelmed, because I have tried so many methods to catapult myself out of the pain spiral, or at least to help me to crawl out. I have not found the way out of the pain, but I have tried many things and gained many insights.

My fibromyalgia has been joined by other illnesses that cause pain: Idiopathic Intercranial Hypertension What is it? Lichen sclerosus What is it ? Vulvodynia, Interstitial cystitis What is it? Irritable bowel with diverticula What's that ? and many more. This is not uncommon. Almost all the people with fibromyalgia I have met also have other diseases.

Here is an incomplete collection of treatment methods I tried. I'm sure you know some. What did you try and how did it help?

The proof of the pudding is in the eating

  • Acupuncture - it took me a long time to find the right practitioner. For the overall symptoms of fibromyalgia this does not help, but for specific problem areas it does
  • Antidepressants - First of all, I usually react paradoxically, i.e. the opposite of what is desired, happens. I put on weight and have so many side effects that make my life very difficult and don't decline. Was not a solution for me
  • Craniosacral therapy - has only helped in the very short term, if at all
  • Steam bath - sauna is not possible, but I find steam bathing beneficial. I like warmth in general.
  • Continuous showers - Was part of rehab therapy. Didn't help me. Although sometimes at night I take a very long hot shower. (Not good for the skin!)
  • Relaxation techniques - autogenic training, progressive muscle relaxation, dream travel. I had a lot of trouble learning these methods, my ADD brain is a hindrance. I constantly link sounds, smells and feelings with thoughts. The tension wanders through my body and never completely lets go. A sentence from my initial autogenous training course helps me nevertheless again and again - "I am and will remain calm and relaxed".
  • Change of diet - I've tried so many forms of nutrition. I also had nutritional consultations. Currently mostly vegan, and gluten-free, lots of vegetables, it is helpful at the moment
  • Fasting - I fast 2 times a year for 4 weeks (never do it without a doctor's advice!!) It helps me with the pain of arthritis, and digestion, and I just feel better afterwards.
  • Feldenkrais - has not really helped
  • Gymnastics on apparatus - afterwards I always had a lot of pain
  • Alternative Practitioner treatment - was often too diverse and confusing.
  • Hay baths- I only did it once. Actually, I'm allergic, but I wasn't that time. It was very pleasant, but with no lasting effect.
  • Homeopathy - Have a wonderful homeopath who is also trained as a doctor. She takes her time and is very responsive to me. I know that many people think it's a load of humbug. It works for me.
  • Physiotherapy - Since I have known my physiotherapists for 16 years now, and they have known me, our communication is good and therapy is most helpful. They can and do respond to my acute needs.
  • Lymph drainage - helps. I have lymph and lipedema, but mainly it helps because of fibromyalgia. I cannot tolerate normal massage. It causes more pain.
  • Manual therapy - has helped for very specific problems - cervical spinal blockages. Doesn't help me much with fibromyalgia
  • Medication - I am highly sensitive and have not felt any pain relief from many painkillers, but many side effects.
  • Meditation - Is similar to the relaxation techniques, but I try it again and again. I like it when I can listen to a beautiful, soft voice.
  • Moorsack - This warm medical moor earth filled into a little sack. It helps with abdominal pain.
  • Moxa accupunture - Was in addition to acupuncture, was too varied. Could not determine any specific effect.
  • Nordic Walking - I need a cane to walk with anyway, two are better. It's a form of exercise that I can do best. But I do it alone at my own pace.
  • Psychotherapy - helps me a lot. I have a very good relationship of trust with the therapist.
  • Reflexology - helps when direct treatment to affected areas is not tolerated.
  • Restorative Yoga - What is it? I did it once in England. I haven't found it here yet. It did me a lot of good.
  • Ointments - hardly help at all
  • Painkillers - See medications
  • cupping massage - I have only experienced in-patient cupping massage, it has helped with back pain.
  • Self-help group - is a good thing Self-help group campfire
  • Dietary supplements - magnesium, vitamin D and vitamin B12 (vegan diet) do not harm, but my vitamin D deficiency is persistent
  • Writing a diary - I do not succeed consistently, but helps to shift focus
  • Creative writing - in the sense of blogging - we shall see. I also write poems sometimes.
  • Tens - did not help
  • Thermal bath - The warm water is pleasant. The stay in it is extremely exhausting. Promotes the urge to wee. Some jets cause pain.
  • Interpreting dreams - doesn't really help me. I can rarely remember a dream
  • Applications - have not helped
  • Warming pillow - I like it very much.
  • Water gymnastics - normal swimming pools are too cold. Thermal bath see above. But I do try it out sometimes.
  • Yoga... not possible (except for restorative). I can't get down and I can't get up and I can't hold almost any position.

Nothing catapulted me out of pain.

The person I used to be has died

My most important realisation in the last 16 years since my diagnosis has been that I have to let go of the idea that I can completely eliminate my symptoms with any kind of treatment and become completely healthy. By that I mean that I will become like I was before. That person from "before" died and had to be mourned. Therefore, I do not do any treatments that hardly affect my symptoms or even make them worse. This includes pain medication. No miracle is going to happen. I try to manage my life so that I can control my symptoms to some extent. Therapists help me with that. As trite as it sounds, I try to make the best of my current life with illness. Sometimes the best is quite modest.

"Illness and death are not signs of failure; what is a failure is not living. Our goal is learning to live - joyously and lovingly."

Dr. Bernie Siegel

"I need you to change your face!"

My stepmother, Tina, who sadly passed away 2 years ago, often said to me when we were out and about: "I need you to change your face!" Which means, "Your facial expression doesn't show what I want to see." We might have been shopping and she wanted to buy something. I must have looked quite disapproving at times.

Also in dealing with the disease I should sometimes change my facial expression, or rather how I think. What do I mean by that?

When I think, "Oh man, today is such a shit day, everything hurts, I can't do anything, I'm so exhausted, I don't like this life". Then the day is basically already over. But if I think: "Today the pain is bad, but it will decrease again a little, I will feel better than now." Then I don't feel quite so bad, and I can try to make the day as bearable as possible. Yes, it's difficult, I know, because the director doesn't always stick to my "script", but at least I help to shape it.

Why should I be grateful?

Being grateful is also a topic. Yes ok, I didn't choose the disease, it wasn´t an option I wanted to take. However, what definitely ist my choice is how I deal with it. If I find a diet that does me good; move around so that it works; divide my day into small manageable blocks with rest periods; see the little things again: flowering plants, birds that come into the garden, then I am making an effort to take care of myself. If I open my eyes to the little things, the day can get better. I am not completely at the mercy of illness, I can do something. I cannot heal myself, but I can behave in such a way that some things become more bearable and I can also feel joy. I am always up for a bit of joy! That is a reason to be grateful, despite everything.

Of course, I do not always manage to do this all the time. (ask my husband!)

Photo by freestocks on Unsplash

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