My son has been in agony since Christmas for the last five months he has screamed for hours every day, he hasn't been to school since 8th January and is having to use a wheelchair.
We have had umpteen blood tests, two MRIs and seen several specialists. In the last few days fibromyalgia has been discussed as a diagnosis. Most of his symptoms seem to fit with a few anomalies. Any advice on whether this sounds like fibro would be much appreciated.
Severe back pain in thoracic spine (reduces to screaming and crying)
Severe cramping in arms and legs (reduces to screaming and crying)
Spasming in arms, legs, neck and face (can go on for prolonged periods making him sweat)
Locking jaw
Pain in ankles and wrists
General back pain
Burning in back and limbs
Sudden penile pain (enough to make him cry out)
Bed wetting and not being able to get to the toilet in time.
Any help gratefully received it is truly awful watching our baby suffer so much. My happy confident little boy is now in agony and lacking in any confidence. Just awful.
Lisa x
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Joshuasmum
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Hi and a warm welcome to our community. Here you will find information, support, friendship and some laughter too.
Certainly, the general, widespread pain and muscle spasms/cramping are common with fibromyalgia pain and it sounds like tests have all been done to rule out other possible conditions
Hopefully we will have some other members who have children with fibromyalgia, who can share their own experiences with you. Xxx
Poor little man. Have you looked into connective tissue disorders? Many of the symptoms overlap with fibro and fibro can often be misdiagnosed. I had similar symptoms to your little boy from around the same age and after seeing a geneticist I was diagnosed with ehlers ehlers danlos syndrome hyper mobility with the possibility of this diagnosis being changed to marfans syndrome ( clinical tests indicate marfans however I have never had genetic testing as at present , providing my heart symptoms don’t worsen, the treatment is the same and iv been told to always mention marfans if I need to go to hospital) It’s certainly worth doing a bit of research and seeing if your sons symptoms are similar to that of EDS or hyper mobility syndrome or any other tissue disorder as doctors don’t often bring these up they often consider the most common conditions for causing the symptoms rather than the rarer or less known ones. Good luck and I hope your little man gets some relief and answers very soon. ..... I hope this makes sense ( evening meds have been taken so it could be totally impossible to decifer lol ) if you need anything clearing up or what any more info please feel free to message me.
Morning , my heart goes out to him at such a young age, I hope that when all the tests have been done they can move forward with suitable help and pain relieve, keep us posted xx
Sorry my friend. I am now an old man in my 86th year. I was diagnosed by a number of specialists and GP as having Fibromyalgia. It is too long a story to go into a lot of detail here but I have become terribly fed up with many different practitioners and I am still searching trying to get help.
The only advice I can really offer is somehow get a referral to a helpful doctor and arrange some genetic tests. I found many years ago that I have a moderately high quantity of an Amino Acid called Homocysteine in my blood. There can be a number of reasons for this but one reason can be that you have a genetic anomaly. Mine turned out to be what is called Homozygous MTHFR c677T. This means that I have a problem in the gene that allows my body to process Folate and I finish up being low in most B vitamins but B12 is a big problem also as do other B vitamins. Folic Acid which doctors confuse with Folate is not good for me. Folic Acid is not Folate and has a different chemical formula totally and makes matters worse. If you got a result like mine you would need tp see a geneticist ass tests for B vitamins can be inaccurate. This genetic problem reduces the capacity to process Folate (B9) by up to 70% and folate in your blood mayu not be of any use as it has not be processed.
I am only a victim and do not wish to confuse the problem, but find a good doctor who will consider all options. I arranged my tests through a helpful doctor but most doctors simply ignored me or said it was nothing
I may be totally wrong in your sons case but please find out. Try Googling Homocysteine, & MTHFR gene. I will say no more but a number of people in my family have had problems even my 59 year old daughter died in front of me I believe due to this problem but in the UK you may have better luck. Don't stop looking
BILL P. Australia
Look up Elhers Danlos syndrome. I was diagnosed with fibro 18yrs ago but had severe symptoms which didn’t fit a lot of Fibro symptoms. I was finally diagnosed with hEDS! A lot of what you describe fits that more than Fibro. Hope he’s ok.
I am so sorry I cannot help you and your son in any way. Your sons symptoms sound very similar to my own. I was diagnosed with Fibromyalgia aged 40 after having an operation. I am now 58.
Recently I have been out on to a couple of new drugs which seem to be helping - although the Duloxatine (a treatment for depression that strangely works on nerve pain) has given m side effects of headaches, nausea and sweats. The second is Gabapentin. No side effects. It’s about getting the diseases right.
The symptoms of your son sound really similar and would imagine at 10 years old would be devastating. However trial and error with nerve pain drugs can help ease the symptoms. I hope that FM is not the case and that you get another diagnosis that can be treated quickly and effectively. Wishing you both well, this is a very positive and supportive group. I am sure you get good use from it.
Oh, the poor wee man, my heart goes out to him. I was diagnosed at 29 but I had trouble with severe growing pains in my knees as a child and painful thoracic back from when I was a teen. A lot of symptoms do sound like fibro. Has he had the trigger point check? Is he on any meds? I had spasms as a side effect of the combination of two meds so have changed meds, but I still get some spasms. I find that taking magnesium has helped with that. I hope you get some answers soon x
Thank you all so much for all the advice and guidance. I will definitely discuss all the syndromes and conditions you have mentioned with the Doctors.
In answer to the pain relief question Joshua is on pregabalin, valium, ibuprofen round the clock and cocodamol when it's at its worst. Hes also taking vitamin D, B12 and an iron supplement. All these medications are at adult doses so that is a worry too.
It really helps to know people understand his pain and Joshua has been touched by your sympathy and support.
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