It is fabulous to see the sun shining and have all my windows and doors open. The aroma of freshly cut grass and blossoms wafting in with the wonderful background music of bird song serenading me. Our lawn is looking pretty as covered in buttercups and small flowers.
The sunny weather brings with it some soothing heat for my painful joints all be it from the shade of a patio umbrella. taking great care to ensure I remain hydrated and out of direct sunshine. Too much heat can trigger exacerbation of symptoms so I’m learning to recognize when to call it a day and move inside. Once a sun worshipper I am now a sun dodger and shade seeker. The coast a friend and favorite place of mine, cooling toe dipping in the sea with refreshing sea breezes. Topped of with picnics beneath the old faithful angled parasol, well used, taped up, frequently repaired yet still functioning ~ providing welcome shade. I just wish I lived on the coast, instead we visit as frequently as we can for mid week breaks and long weekends.
It would seem as the years roll on I am collecting labels of illnesses allegedly explaining my symptoms. For years I’ve had IBS, swinging from needing laxido 3 times a day to popping Imodium ~ haemmorhoids and diverticulitis resulted from this & so now have to be careful to not cause a flare of symptoms and Gaviscon tablets and buscopan have been added to the medication required. I also have chronic depression and have been on almost every kind of antidepressant, I have discovered I am scarily allergic to Prozac and that Amitriptyline is my saviour ~ not only keeping my black dog to heel but also helping calm my hyperactive bladder and settle my insomnia.
Gradually these past few years my health has declined markedly. Resulting in diagnosis of Myalgic Encephalomyelitis (ME) beginning of 2016. Then Hypermobility Ehlers-Danlos Syndrome (HEDS) early this year (both these diagnoses by ME Clinic). Then most recently Fibromyalgia (FM) and confirmation of HEDS by Rheumatologist a few months ago. Add to that grumbling kidneys and chronic pain too.
I questioned whether it is possible to have all three of the chronic conditions ME, HEDS & FM together ~ surely it must be just one of these conditions causing my symptoms and pain? To which I was told that yes, I have all 3 and that these conditions often are found to co~exist. If any of you reading this have these conditions too I would welcome your thoughts.
The long and short of it all is that I am in pain, lacking in energy, cognitively challenged and exploring ways in which I can combat these symptoms and improve them ~ again, thoughts, tips, suggestions all welcomed.
I have found wearing supports help my ankles and wrists, but worry about becoming dependent on them and so need to find safe low impact exercises to try and strengthen them without exacerbating the pain to intolerable levels. This is a photo of my ankles first thing in the morning ~ after being elevated all night ~ with my supports during the day they don’t get more swollen, without they do. However they never go down & hurt, especially the Achilles, constantly. My rheumatologist says it’s fluid over my tendons and has not seen bulging swellings like this before. As yet I still have no solution to how to reduce swelling and pain, they could be caused by my grumbling kidneys, my EDS (as over tendons) or leaky heart valve ~ still awaiting heart scan ~ so again any tips or thoughts welcomed.
Whilst looking to see if I could find any information about all three of these conditions existing together as a multiple diagnosis I came across this article, which I found interesting, “One Gene, Many Disorders: Could One Gene Help Explain ME/CFS, FM, POTS, IBS, EDS, IBS and Others” written by Cort Johnson. In it he asks ~ “ME/CFS, FM, POTS, IBS, EDS and others often exist in a kind of swarm of interconnected illnesses. All have been maligned at one time or another because of the wide range of symptoms they produce. How could a biological disease cause so many different symptoms?”
Being diagnosed with ME/CFS, FM, IBS & HEDS I carried on reading, it says “The more researchers looked, the more they seemed to uncover a large group of syndromes which tended to flock together. Anyone who has ME/CFS or FM now has to consider whether they also might have dysautonomia, IBS, POTS, MCAS and a host of other disorders (interstitial cystitis, migraine, multiple chemical sensitivities, small fiber neuropathy).” Wow, so it is possible to have all of these together! My question is what can be done as both FM and HEDS are prescribed exercise as part of the treatment, along with pain relief ~ but with ME exercise makes the illness so much worse ~ plus there is Post Exerting Malaise (PEM) to consider with ME too!
Further on in the article it says some research had found that these conditions show genetic changes in common and therefore likely to be hereditary too. the study offers hope for sufferers with further research possibly finding ways to combat the conditions. “Elevated basal serum tryptase identifies a multisystem disorder associated with increased TPSAB1…It’s rare that genetic effects are so clear. In fact, the genetic effects were so clear that the condition is now called hereditary-a tryptasemia. This disease is “exclusively caused” by increased copy numbers of the tryptase-producing sequence. Exactly how elevated tryptase levels are causing pain and autonomic nervous symptoms is not clear but may involve “protease-activated 2 receptor pathways” (if that’s any help – lol). The study highlights, though, that it’s not necessary to understand a disease to find a treatment for it. Knowing that elevated tryptase levels cause pain, connective tissue problems and orthostatic intolerance, even if we don’t know how, can allow researchers to develop anti-tryptase blockers that could conceivably stop these symptoms in their tracks”
I am cautiously optimistic about this news as so many “breakthroughs” come to nothing but hope this one continues to work on finding ways to combat these illnesses with treatments successful in allowing sufferers reclaiming their lives.
Until then, which I anticipate will be many years yet I am waiting for follow up appointments, further investigations and a meeting with my GP to discuss further pain relief options along with ways to work with my joint strength and swellings.
Today is a high pain day ~ distraction therapy helps, writing this blog, sharing with others helps. I hope if you have these conditions you don’t feel so isolated ~ I am here and open to communication, friendship and mutual support. Also open to discussion about options and treatments that work for you, how you self care and cope.
I will leave you with an image that made my poor postie jump ~ a tight shiny face mask on a face with hair scraped back under a bandana ~ poor bloke 😂.
To top off my day our little Loki has come in from the garden, plonked himself on me and promptly fallen asleep and he STINKS! I have no idea what he’s rolled in but when hubby gets back to help he will need bathing ~ as Loki despises baths making it a two man job. Taylor on the other hand has taken up position ~ far away from stinky, to guard and warn us of any rogue cats, squirrels or birds, I may need to dig out the ear defenders!
Hoping today is being kind to you and that the sunny weather isn’t too uncomfortable for you. ‘Til next time sending strength and love your way.