Fibromyalgia and medical procedures

[leamat]

Can I share some information I was given, I had both an endoscopy and sigmoidoscopy around 9 years ago. The Dr performing these procedures told me beforehand there are 2 groups for whom they adjust how they do these procedures.One was Fibro sufferers, I cannot remember the other ( Diabetics I think ?) She said the muscles tend to be very ridged and tear very easily in Fibro sufferers so they need more time to SLOWLY guide the scope as there is more resistance.I felt very reassured by her knowledge and had the procedure done with no problems. I have now just had a colonoscopy by another Dr who I informed that I suffer with Fibro but got no such reassurance or feedback and it was not successful in terms of extreme pain, healing, profuse bleeding etc,it was not done with the same consideration and understanding of the condition and I am suffering still 5 days later and have had to be re admitted to hospital for several days due to haemorrhaging. I often find there are huge gaps in medics understanding/education if this condition which is very worrying ! Please pass this information on to any Dr's you may encounter,it is up to them if they wish to take note but at least make them aware. I have found this with optician's also as the eyes are often affected by fibro in many ways.

I recently had an eye test at Specsavers with a young Guy who looked no more than 15yrs old but was shocked to find he had a huge understanding of the affects of this condition on the eyes and he taught me masses! It is a widely misunderstood and dismissed health condition, I always feel it's a bit like the dyslexia debate between educational professionals, those who believe it exists v those who dismiss it as an excuse to not learn... pure ignorance!!

So please spread the word.

[Janet28]

Hi leamat Welcome to our wonderful forum 😀 I'm sure you will find it invaluable chatting to others who have similar experiences and at different stages of their lives with fibromyalgia.

I'm sorry you have had all this to deal with and yes you are correct in what you say, it is a worry, especially when you have to have any operations etc.

Please do go check out the mother site fmauk.org where you will find lots of useful information and links on fibro.

It's a good idea to lock your posts to the community so they are not accessible from the internet. If you look to right of screen you will see under "Pinned Posts" a number of blue links & instructions on how to lock it.

Peace, luv n light

Jan xx

[rosewine]

Thank you for the time you have taken to write your very informative post. It all makes sense to me as the bowels are muscular. I think that is why many of us have IBS. I have just opened my post and have been sent a letter about bowel screening so you are very "on" topic.

It is really the luck of the draw who you get for these things and the knowledge they have. I have actually found younger medical staff are much more open to the concept of fibro. Like you the last time I went to the opticians I had a very young male optician who was extremely knowledgeable about fibro and the effects of it on our eyes and why it was so difficult for us to get the right prescription.x

[elizabethanera in reply to rosewine]

Hi, wot a really good post! Thank you! Awful experience for you. I have recently had a colonoscopy and endoscopy,but was so lucky to have a really kind, compassionate Dr, who was also extremely informative and patient.i even managed without sedation.it confirmed MRI scan, severe diverticulitis. Most unpleasant procedure.

Having had years of spontaneous diahorrea, and told it was anxiety/stress by indifferent GPS, it was a relief in a way. Also recently diagnosed with fibromyalgia, osteoporosis,bronchodilitis damage, burning mouth syndrome. not in my mind atall.now have to have liver /kidney tests.all overwhelming at the moment. So good to have such caring people on this site.thinking of you!

[Hidden]

I'm assuming you have been diegnosed with Fibromygia and are make this point of view which is very interesting

[leamat in reply to Hidden]

Hi Erny,

Yes I was finally diagnosed around 13years ago after the usual misdiagnosis of other conditions over 5-6years ie MS, depression,Lupus,all in my mind ! etc. The first formal diagnoses by Rheumatologist (M Irani) was osteoarthritis, I was just not convinced, the physiotherapist he had refered me to also felt it was not the correct diagnosis.

I decide to ask my GP if I could see another rheumatologist for a second opinion fully expecting her to give me a flat NO! but she was very keen, so I met with consultant R Hughes who within seconds dismissed his colleagues diagnosis sent me immediately for an xray of my spine to illustrate the fact that there was absolutely no arthritis and infact I had the spine of someone much younger, he also said I had hypermobility in my joints (hips & shoulders) and showed me a normal range of flexibility against mine (I had never heard of hyper mobility at that point) he told me his diagnosis was soft tissue pain syndrome,again I had never heard of it so went home to research on the internet but could not find anything about this mysterious condition?

I frustratedly went back to my GP and said "I do not know what soft tissue pain syndrome condition is & cannot find any information anywhere" she told me it is sometimes refered to as Fibromyalgia (again never heard of it) I went home and looked it up and there was a HUGE !! lightbulb going off moment and I oddly felt very emotional to see it just fitted all that I was suffering with and was not loopy after all. When I next saw R Hughes I asked why he called it soft tissue pain syndrome as opposed to Fibromyalgia ? he replied "because there is a stigma attached to people who are diagnosed with that" I asked in what way to which he replied "that they are not copers and I believe you are a lady that can very much cope" This worried me and I felt I wanted absolute confirmation of this diagnosis.

I eventually decided I would privately self refer to see a Rheumatologist specialising in Fibromyalgia from Guy's hospital, he came recommended by fibro support group and he confirmed the diagnosis.

I would say to anybody recently diagnosed there are worse things you can have to deal with than this, try as many different things as you can to see what works for you as it is a very individual thing in how you respond, I find hydrotherapy works the absolute best for me! and sitting still not moving is the worse thing you can do, warmth is vital don't get cold or stand/sit near air conditioning units or drafts. One of the best bits of advice was from one of the many many physio's I have met along this journey "Pace yourself"! don't go in all guns blazing, I find this difficult as I am fiercely independent and have extremely high expectation of myself and my capabilities. Most of all AVOID STRESS as much as possible(just let it go as the song says)easier said, it hugely intensifies pain & fatigue. Remembering there is always someone worse off than you is another thing that helps, when I see wheelchair bound or a blind person etc it makes me feel grateful that I can still have a great life with a few adaptions, glass half full thing

[TheAuthor]

Hi leamat

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

Thank you so much for such an interesting post my friend.

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

[Shazzzy]

Thanks for that leamat, I am going for an endoscopy and colonoscopy next month. I am now going to look up fibro and these procedures and take anything I find with me for medical staff.

[Huskywomen]

I had a sigmoidoscopy few weeks back,it was abandoned due to being very sore, I was also very sore for approx three days afterwards, the consultant did not seem to understand fibromyalgia so he was not interested , he suggested that he would send me to biofeedback nurse, I am so fed up, even when I have a bowel moment I am really sore afterwards, I have also got a redundant sigmoid I suffer from constipation , what I understand fibromyalgia can affect you whole body even the bowel and pelvic muscles.

[leamat in reply to Huskywomen]

Yes absolutely ! Huskywomen this is the case from what I have been told, Fibromyalgia can affect every muscle function in the body to a varying degree ! When you consider we are largely made up of muscles to operate nearly all of our systems it all makes sense and hence the recommendation to take magnesium supplements (most fibro suffers are deficient apparently?) to help support muscle strength. Bowel problems are a very common part of fibro and I can experience similar to what you describe so keeping on top of constipation is vital. I have found the dismissive attitudes and lack of knowledge re fibro by the majority of the medical profession very worrying and upsetting.Where possible I try to find support with alternative therapy practitioners which have a much more open minded and broader understanding of health problems but of course they can only do so much (not medical procedures).

I hope you get things sorted out and feel better soon, take care.

L

[Huskywomen]

Hi thank you for your reply, I will definitely look into getting magnesium supplements, see if that helps,all consultants are good with there special medical areas but don't think out of the box when they come across fibromyalgia symptoms and don't understand them

[Funkyfaerie]

I would be interested in what the guy had to ssy about fibromyalgia and eyes if you can remember. I have a lot of problems with my eyes. Apart from bad vision, they are dry, itch, the skin around them gets red, watery at times especially outside in the air, drives me crazy! Thanks J

[leamat in reply to Funkyfaerie]

Hi,

Yes that is one of the things he told me about, that people diagnosed with fibromyalgia tend to suffer with dry eyes and he asked if I had noticed this especially when using computer screens,reading etc (which I do mildly but it is not a particular problem to me) he said there are some eye drops that would help if I needed them. He also said that suffers can also have difficulty with night driving, peripheral vision is not so good ( I failed that part of the eye test 8 times) and sensitivity to sunlight. That is all I can remember but hope that helps.

[Bobby16]

I read that recent studies have suggested that fibromyalgia is a condition of the brain and spinal cord.

[leamat in reply to Bobby16]

Yes along the road of discovery re Fibromyalgia this is something that has popped up on my radar ! While attending a fibro support group meeting held in Long Ditton (Surrey) a few years ago, a conference that the members were thinking of going to which was led by an American medical professional researching a connection between Fibromyalgia and injury involving (I think) junction T3 or T4 of the spine, he had found a significant increase of diagnosis in people who had experienced whiplash injuries. We started discussing this and soon realised indeed the majority of us had experienced a whiplash injury most commonly car accidents which we all found extremely interesting! I have also been told that it can be a certain type if virus you may have been affected by historically that remain in the spine.

This is the thing about Fibromyalgia there are so many theories and contradiction's that you get totally confused. The cause has been explained to me over the years by many health professionals in many different way's ranging from - it being a form of Arthritis,central nervous system disorder, a form of depression, Thyroid imbalance, the body having a nervous breakdown, food intolerance, sufferers not doing enough exercise, a diagnosis made when they don't know what is wrong. I was told by an awful GP 6 months ago while attending my H/Centre with excruciating pain in my foot that it is highly unlikely that I have Fibromyalgia as it only last 2 years and is more likely to be gout, putting me on very strong painkillers that I could not tolerate with a sensitive stomach(another common symptom of Fibro I believe) I continued walking on it for a further 3 months in absolute agony until another GP had it x-rayed and found it was a broken toe. I feel some medical professionals can Pidgeon hole you as neurotic if you mention having Fibro so I try to avoid doing so now as I think it altered that first GP view of me and in turn made her dismissive of my symptoms.

[Mackembabe]

Thank you for sharing that very informative.

Love & Hugs

Xx