Hello to all that reads my post, it's not actually about me, it's about my sister.
She is now 53 and from the age of 15 she was diagnosed with IBS which has ruled her life, stopped her from many things incase she has a flare up!
She got married had two children and in 2002 we started a cleaning business cleaning local domestic homes.
Any new customers brought on IBS until she felt comfortable with them.
From 2002 till now she has complained of various pains throughout her body.
But I noticed around four years ago in the summer when you don't wear tights her legs were quite blue!
She has a prolapse though no operation for it, she has cysts on her kidneys though nothing done about them.
She never seems to get much luck at the doctors just palmed off.
Until just recently, the last six months she has complained of pain in her legs her hips her hands and her feet , the soles of her feet feel like they are on fire especially her left one.
Two weeks ago she sat in the bath and when she put her hands inside she said it felt like buzzing as if bees were around her hands.
Then a few days back she got in the bath and had to get out quick as it felt like electric shock had gone through her back she immediately felt very sick and was taking to A & E.
I have to say my this point a rather nice doctor has put her forward for a MRI scan on her brain, she was waiting at the time for this scan when she went to A &E.
She was sent home and told to wait for her scan.
Her doctor thinks it could be a brain tumour though highly unlikely or chronic fatigue or firbromylega not sure how let is spelt sorry.....
Or M S .......
At work she has been unsteady on her feet, she has fallen over, she been dizzy her knuckles on her handshake tripled and look very much to me like arthritis !
Now the lastest thing is her left foot, she sometimes has to drag it!
I can write forever loads of things she complains about, but she always manages to go to work and look after her grandchild on her day off.
She has now had the MRI scan and now awaiting results.
Anyone else had these symptoms she also has blood group A were she has to carry a card.
She never puts weight on has always had a problem relation with food only since being married.
she gets ulcers in her mouth regularly, itchy skin, hot water bottle on her hip at night cos she crys in her sleep as it hurts so much.
She use to say she had restless leg syndrome.
Hoping someone can help me as its my sister she sounds like a total moaner lol!
Written by
Figgy22
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Hi there Figgy lovely to hear you, I really wish I had answer but we aren't doctors hear. The symptoms certainly sound like fibro. What I would say is she sure suffers a lot without any medical support so diagnosis seems important. At least then she may be able to ease symptoms at least knowing what and how to. The diagnosis is kinda important so if you would support your sister in getting that that would be great for her. x
Sorry to hear about your sister.. a lot of her symptoms sound fibromyalgia related... I was diagnosed with Irritable bowel at 18 years, but also suffered bad aching in my legs (doctors said "growing pains"... although I wasn't growing anymore!!)
I also get aching hips, pins and needles, drop things easily, clumsy, walk into door frames, get tired very easily, and finally diagnosed at 43 with Fibromyalgia.
Does she find stressful situations make her symptoms worse?
Like you say symptoms of MS and fibromyalgia can be very similar, so it is great that the doctors are investigating this, however it would be good if she could ask her doctor to be referred to a Rheumatologist, because they are usually able to diagnose fibromyalgia using a "tender points"test
It is great that she has such a caring and supportive sister like you!
Please let us know how she gets on, and let her know that if she wants to ask questions then she is welcome to join us all here xx
Thank you for your reply, I will tell her about your message, apparently it takes 6 weeks now to get the results of a MRI scan.... So still waiting. She seems to have the same pains as yourself , she says if someone was to touch her it would hurt in some places on her body at the moment near her hip.
What painkillers do you get for this?
I take it you have this forever?
I am seeing her again on Wednesday so will show her the messages and get her to join!
I cannot believe these things take so long to diagnose but then hey...I am learning this is a difficult illness to diagnose also MS .
I also find it painful to touch, my husband can give me a playful light punch or poke on the arm and the pain is excruciating, like he has stabbed me with a knife, he doesn't understand when I scream out with pain! (He calls me a whimp!)
I also am highly sensitive to loud noise, strong smells and bright light.
You will find a full list of possible fibromyalgia symptoms on fibroaction.org
I try not to take painkillers if I can help it, the best way to manage this condition is by "pacing" myself, not overdoing things and as soon as I feel tired I take a break.
I manage to work part time, 12 hours, but only in 3 hour shifts as my job involves standing most of the time.
I do gentle exercise yoga,swimming and short walks with the dog.
I have found the booklet called the Pain Toolkit very helpful (suitable for all chronic conditions) it is available on the website paintoolkit.org.
I do believe that fibromyalgia is "forever" but after a while it is possible to accept it and learn to live with it .....the hardest part for me is learning to say NO when people expect too much from me... they can only remember all the things I used to be able to do and as it is an "invisible condition" and we don't look ill, they can't understand why I am not able to do all those things anymore.
Look forward to hearing from you and your sister again xx
If MS is suspected the Dr's will be looking for spots on the MRI.
Trouble is the symptoms of so many conditions are alike. I really hope they get to the bottom of this, but it can involved a huge amount of tests to eliminate conditions as much as diagnosing.
My wife has Primary Progressive MS, and the symptoms and the medications are pretty much akin to Fibro so it is really difficult to say? I would like to point out that there are 3 types of MS, Remitting, Secondary Progressive and Primary Progressive each one stepping up a notch in severity. So MS is like a piece of string? How long is apiece of string? The only sure way to know is by the Neurologist detecting lesions on the brain I am sorry to say.
I want to genuinely wish you all the best of luck, and I sincerely hope that you do not have anything seriously wrong show up on your MRI.
Thank you for your reply, I will forward on all the messages that I have received so far.
Sounds like fibro and MS is very similar ......we await her results I will forward on her results as soon as I know and will get my sister to join the web site as it's very informative and supportive thank you xx
I think we all have experienced those awful periods of time and angst waiting for information allowing us to plan what to do. Sometimes we are told it will take xx time for results. Sometimes its worth chasing up the medic responsible for diagnosis yourself. Its amazing how many people I speak to who have never thought to chase themselves. Your sister has already waited a long time for diagnosis, thank goodness she has you for support. Well done!
I have been suffering with fibromyalgia for over 5 years now and today I'm having an MRI on my brain and the whole of my spine.
They are making sure it's not something else as fibro does mirror other conditions. My left eye is smaller than the other eye and that is what worried the Neurologist also my standing is much worse, leaning to the left, jerks when I'm tired, and terrible headaches which can last up to 3 days. The MRI is later today and will last 70 minutes minimum.
I will let others on here of the results when I receive them. Im hoping it's not 6 weeks!
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