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Hi everyone, today I went for a 8 km walk and I must say that it was not easy. This hot weather always makes me feel awful, my muscles feels as if they weight tonnes and my tendons always aches like hell as if they are constantly inflamed so all this together doesn’t help at all. On winter I feel much better but I have different pains. Since I can’t do Qi Gong with a full belly I’m making time till I feel emptier in order to start my exercises.


 

killing-loneliness

For what I have been reading in the past years about Fibromyalgia (FM) studies and treatments I must say that Portugal is not that advanced concerning how to treat FM sufferers. However, there’s a point in common in every article and study on FM and that is that the prescribed medicines are not at all effective in most cases, actually the side effects of some of the most used ones are terrible, still there are doctors who insist to force their patients to take them. 

In my case, unfortunately, it took several years to find a doctor who at last could make a diagnose. Officially, I’ve been suffering from depression since the age of 17, I also used to complaint about insomnia and migraines, pains in my body and back, fatigue and memory problems. As you know at this age we need our brain to work properly if we want to continue our studies, as it was my case. Frequently I went to see my GP asking for something to help me with my studies because I was having problems concentrating and memorising things. Not to talk about my constant tiredness! I used to fall asleep in classes at University which it was not seen with good eyes by my teachers, but for goodness sake what could I do?!…

My GP, who by the way was and still is incompetent, used to prescribe me some multi-vitamins. She also used to tell me that I was far too young to have such pains that was all in my head. Bullshit it was!… As time went by I grew older, I become more intelligent and due to my last job I had a lot of contact with doctors and nurses as well as to information in the medical field. Almost 10 years of my life working in a laboratory of clinical exams taught me a lot and gave me the information and background that I didn’t have. So I started telling my GP which blood exams I wanted and I asked for scans to my spine, hips, thyroid.. I just have made as many exams as I could remember to help me find what was wrong with me.

At first I could only find that I had serious problems with my spine and left hip, that transformed into localized osteoporosis in my spine, unsymmetrical hips which is leading to osteoporosis also and other issues. Also had problems with thyroid in the past but nothing serious. I also made other blood exams to check for infections or inflammations in my body which was and still is positive with only one difference, every time I do those blood tests for control the values are getting worse. It was me who found out that I had my Vitamin D levels too low for several years now, my cortisol levels too high due to my stress levels. My CBC is always with the values upside down, a total mess… My point is that my doctor who used to tell me that I was far too young to have health issues was flabbergasted by the results and seeing how wrong she was all these years. 

For several years I took vitamins who were completely useless and anti depressants that didn’t do anything on me at all. Finally, the only intelligent decision my GP ever made wad to send me to hospital for medical exams and to be seen by a specialist. It wasn’t that easy at first because doctors wanted to convince me that the pains were all in my head. At this time I just lost my head and I yelled at this doctor and told him so many nasty things that he decided to send me to a colleague, a rheumatologist.  I got a diagnose at last but it was not a good one. Knowing that I had FM was the first step and said to myself that at least now I know what’s wrong with me. However, as for my physical issues I was brutally informed that my problem has no cure, that my pains will grow stronger and get worse and worse, that was no hope for my problems. Concerning fibromyalgia, I was told that I might have a normal life if I take some medicines and have shiatsu sessions along with hydrotherapy. I was told that I also might suffer from bipolar disease and that I also have obsessive compulsive behaviour. We don’t have therapist in Portugal unless you have money and can afford paying a lot for one. Shiatsu and hydrotheraphy is also very expensive and I cannot afford them.

So, my treatment was in the beginning Tramadol for pains, Flexeril as a muscle relaxant, Victan (Ethyl loflazepate) for anxiety and Xanax (alprazolam), Nimesulide & Ibuprofen. These two in last I take in different occasions and depending on the level of pain or inflammation in my spine. I also take Valerian to help me sleep at night. Nevertheless, after a long time taking all these medicines I realized that they were making me more harm than good, especially with the side effects. 

Tramadol has shown to be ineffective to release me from pains, so I don’t take it any more. Flexeril, gives me awful side effects and in the end the little positive effect it might have on me doesn’t worth it. I don’t take Xanax any longer for only one main reason: I’m taking it since I was very young ( I have always been a very stressed person). Ibuprofen and Nimesulide helps me a bit when my spine pains and hip are too acute but they don’t perform miracles so I try not to take them very often. I don’t take also any anti depressant also because I have taken them for several years now and had no positive effect in the end.

Well, after a study of my pain levels, of what may or may not increase them or make them worse, a study on food that was making me feel bad and increasing muscle pains etc, I came to the conclusion that combining a series of different things can actually improve my pains a little bit. so here’s my list:

  • exercise ( walking, Tai-Chi/ Qi Gong, muscle strengthening, joint moves
  • meditation ( can ease my mood swings and helps me focus on positive points)
  • Vitamin D ( it helps a lot to improve mood and reduce a bit my pain levels)
  • Magnesium 
  • Vitamin B full complex
  • Valerian 500 mg 3 times/day
  • glucosamine & Omega 3
  • healthy diet ( I try to eat gluten free products, veggies and fruits, fish and white meat)
  • listening to the music can easy my anxiety and panic attacks
  • do what I like to keep my mind off pain such as : photography, writing, reading, games, gardening, blogs
  • set alarm reminders to things I have to do or remember in my mobile phone 

pain

I have been in touch with so many fribromites that keep telling how much weight they have put on due to medication, how badly they feel with pains so they don’t exercise because this will cause them more pain, how much time they spend in bed because they feel tired and so on. LISTEN, I am not perfect and I am in pain 24/7, I cry in despair with my aches all over my body, I feel frustrated because I can’t remember things, sometimes I even don’t know exactly where I am or what was I doing before; when my migraine comes it stays for days, some days I can’t have a normal conversation with my husband because I don’t remember the words and I am unable to have a logical thinking; It’s very hard for me to get up in the morning and have my shower, get dressed and force myself to go out for a walk or just do some exercises. I can’t bear the pains in my spine and knees and hips, they are so acute that I can barely stand up! I am extremely sensitive to noises so I have to sleep with earplugs and sometimes wear them during the day; the light outside is too much for my eyes also; some days I want to read a book or watch a film or even play a game but I can’t because my eye’s muscles don’t stop jumping up and down literally!I have tremors, I drop and break things because I can’t hold them in my hands; I can’t sleep at night because my body aches all over, my legs ache and burn, I am always feeling electric shocks in my neck and brainPAINS and more PAINS. It’s really hard to do the housework, cooking, laundry, climb stairsIt’s bloody hard for me each day, each hour and I do cry a lot in despair because I know that there’s no cure at all and that my life is getting worse each day. I cry because I can’t afford any other resources to help me with this illness, because I can’t afford to pay to see a doctor to guise me with my treatment, I can’t afford to buy any painkiller to ease my pains and above all and not less important, I can’t afford to see a therapist to help me to overcome pain and my psychological problems. 

So, if I can do this without any medical help so can YOU who have medical support! It’s a burden, it’s extremely difficult to live with fibromyalgia but you must fight it!!

 

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