It’s been a while since i last blogged, things have been so hectic with Christmas and New Year, my birthday and doing D.I.Y in the house! Obviously followed by hospital appointments and my health hasn’t been too good either. A few things has changed with my health since my last blog and today i finally had a diagnosis for one and help for the other, and waiting for a diagnosis on two other possible conditions i may have to add to the long and wonderful list!
First of all, i have been diagnosed with Fibromyalgia today. Some people don’t really understand or know what this condition is, so of course being me and doing what i love best; explaining a condition. This isn’t really for my benefit as people who are closely by my side know what it is, but it may help you if you think you have it after reading or you know someone who suffers but would like to know more. Fibromyalgia is a long term condition and is also know as Fibromyalgia Syndrome or Chronic Fatigue Syndrome (as educated by my Rhuematologist.) Sufferers like myself experience pain all over the body but there are more symptoms than just pain all over such as increased sensitivity to pain, fatigue but more so in extreme tiredness that never goes, stiff muscles, insomnia, memory and concentration issues (i like to call “brain fog”), headaches, and IBS also links with it. Obviously i have IBD (Inflammatory Bowel Disease) which is Crohn’s Disease, however before my surgery in June 2015 i had both types. There has been arguments for years with different consultants and surgeons as to whether you can have both Crohn’s Disease and Ulcerative Colitis or not, i can confirm that i did indeed have both. Many people who suffer with IBD or IBS don’t often realise that they are very different from each other and it’s important to know that. IBD is an inflammatory condition whereas IBS (Irritable Bowel Syndrome) is a SYNDROME, but did you know that you can also have both? Even after surgery it can still happen.
So looking into Fibromyalgia, i’ve found that it’s not really know as to why it can happen but it is believed that it is linked with autoimmune conditions and chronic conditions. Some triggers such as surgery or child birth can “bring it on” so to speak. It isn’t a rare condition and many people suffer and it is becoming more common, however it is very difficult to get diagnosed and many go through years for a diagnosis (i’ve waited 5 years.) Now what is hard to understand is that there isn’t a specific test for this, so that in itself makes it difficult-let alone talking to a professional about it. Treatment wise there isn’t much options in fact mainly 3; medication such as antidepressants, talking therapy and life style changes such as exercising. It is difficult when being diagnosed and you don’t know anyone else who suffers, so researching support groups online and on social media can be really beneficial. Fibromyalgia Action UK are are charity who can offer information or if you have any questions, who also have support groups too.
A few months back i was diagnosed with Hyper Mobility Syndrome, today i got some equipment and exercises to help me with day to day things and also help me gain some muscle mass back as i have lost a hell of a lot and my weight continues to drop too. Just for those appointments today i am so grateful to the lovely people who took time to sit and explain things to me and help me in every way they can! My mum also has this and my specialists explained that it is passed on through generations and that its something i was born with. Joint hyper mobility syndrome usually runs in families and can’t be prevented. The joints are loose and stretchy because of the tissues that make your joints stronger and support them are weak. The weakness is caused by collagen that strengthens the tissues are in small quantity. You’re probably wondering “what the hell is that?!” i thought the same thing and i had to ask exactly what it meant. Basically it means you are more flexible than normal people, where your joints are more flexible than other people’s such as being double jointed. The symptoms are very alike with Arthritis such as pain and stiffness in your joints and muscles, dislocating joints, bad balance and/or co-ordination, thinning skin, digestive issues such as constipation or diarrhoea. Diagnosis requires your GP or the person you see to ask you some questions and asking you to do some movements (and yes they hurt!!) Treatment is pretty hard as there isn’t much to help but things like light exercises, controlling pain with pain medication and improving your balance can help (i have started all three today.) If you suffer then my advice to you would be not to over exercise and find an even balance of rest and doing things! If you are also looking into ways for some relief, it was suggested taking warm baths and hot water bottles can help.
Lastly, i have been referred to a Vascular Eye Specialist (ophthalmologist.) Over the past few months my vision and eye pain has become much worse and the blurring is lasting for longer periods of time. In the most recent few weeks my veins have been bruising and swelling, causing me quite a lot of pain and some days my eye is so swollen and red that i simply just don’t open it. From researching, what i know about this is that it is a disruption of the functioning of the optic nerve, which joins your eye to your brain. The symptoms i get which i have also seen online is what i have already described above, followed by headaches (although mine are pretty much constant.) I also have terrible pain when i’m eating and sometimes without eating my jaw becomes incredibly sore. Treatment is usually steroid eye drops so nothing too drastic. It’s hard to tell the difference between this and migraines but the main factor of difference between the two is pretty easy to spot, and that’s eye redness. Sometimes it can cause other issues but so far i’ve been OK except from sickness.
I’m also undergoing a small procedure at some point to take biopsies to determine if my rare type of Crohn’s Disease has spread, i had an MRI scan yesterday too, to see whats happening internally. So it’s been pretty busy and will probably continue to be! I would also like to highlight that during all of these illnesses and diagnoses that my blood tests have always shown up fine, and from reading what i suffer from and the things i go through that blood tests are NOT the definite and the be all way of seeing what is really going on. If you are a health professional reading this then i would like you to understand this, infact i strongly ask that you do. If you are a family member or friend and you have a loved one suffering but yet blood tests comes back fine, it doesn’t mean that that person is OK. Mentally it is tough too so supporting your patients, friend or family member helps so much. We doubt ourselves every single day and the guilt that consumes us is soul destroying, so by understanding and believing in us makes it easier for us to cope. Thankyou.