20 year old looking for answers.

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20 year old looking for answers.

Postby ChloeLRyan » Sat Aug 05, 2017 4:42 pm

Hi guys my name is Chloe and I'm 20 years old. I find myself trying to research conditions as my Drs can be pretty useless and don't really try to find out the cause of the pain and just try to mask it. It is thought I have this rare condition that only 20 people have in the world, but I've never had the test or diagnosis! (Which I am trying to get and currently waiting for referrals). I believe I either have either both illnesses or maybe just one (Fibro or Adult Onset Cerebral Folate Deficiency).

My symptoms include; Pain (nerve, muscle, dull, throbbing, shooting, sharp, aching, tightness), fatigue, morning stiffness, painful trigger points, depression, anxiety, can be sensitive to pain, bad memory, difficulty concentrating sometimes, have trouble getting my words out sometimes, chronic migraines, painful periods, problem urinating (sometimes can't start the flow, when it does start it can be slow, or sometimes I can go around 10 times a day maybe more), IBS, numbness & tingling, restless leg syndrome, being too hot or cold (mainly hot), sensitive to bright lights (can only use lamp in my house and always have to wear sunglasses or I get a migraine), muscle spasms, bloating, nausea, prolonged chewing hurts, jaw especially on one side makes a grinding noise, grinding teeth in my sleep, painful joints, feet are always cold, severe lower and higher back pain (most likely related to disc bulge (lumbar), lumbosacral segmentation disorder, L5 is fused to sacrum and slight scoliosis), reduced tolerance for excercise, feeling of swelling without any swelling especially in my knees and hands, difficulty sleeping, occasional dizziness, random chest pain, palpitations (when gone to hospital had normal ECG, blood pressure etc. Been told it must be neurological), hives upon being cold, been told my back, knees, elbows and hips are all hypermobile. I saw a rheumatologist before I suffered most of these symptoms and before I knew I was hypermobile and he told me that I don't have fibro because I couldn't bend my thumbs back but he didn't test my other joints? What do you fellow fibros think? Should I get a second opinion and do my symptoms sound unfamiliar?

Thank you so much for your time, I'm just looking to solve this and hopefully get a diagnosis and maybe get back to work! :shock:
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Re: 20 year old looking for answers.

Postby perseus » Sat Aug 05, 2017 6:31 pm

Hi Chloe

he told me that I don't have fibro because I couldn't bend my thumbs back

There's a list of typical symptoms of fibromyalgia here


hypermobility is typical with children but not with adults with Chronic fatigue syndrome.

Sixty percent of the 60 children and teens they treated for chronic fatigue syndrome also had hypermobility in at least four of their joints. Only 20 percent of the general public has a single hyperflexible joint, such as being able to bend a pinkie 90 degrees backward, touch the thumb to the forearm, or bend at the waist and rest both hands flat on the ground.

http://ukfibromyalgia.com/pages/mistake ... joints.php

I don't think it is a classic symptom of fibro though

Patients with or without fibromyalgia were also compared for the frequency of joint hypermobility. The frequency of joint hypermobility was:

8% in patients with fibromyalgia.
6% in patients without fibromyalgia.
Joint hypermobility was also recognized in 10 of the 32 patients with fibromyalgia who did not exactly meet the ACR criteria. The presence of joint hypermobility was more common in this group than in the controls.

https://www.verywell.com/joint-hypermob ... gia-188184

Yes I would get a second opinion.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia. Regards Stephen
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Re: 20 year old looking for answers.

Postby *Lisa* » Sat Aug 05, 2017 10:46 pm

I assume you have had bloods taken? checked for auto-immune diseases?...

Does sound like classic fibro & fatigue symptoms as well as problems with your discs & spine.

I also suffer hives tiggered by all sorts like pressure, changes in tempreture, stress & hormones

I also have herniated disc/bulging disc located lower back and some spinal degeneration & oesteoarthritis.

I am under a Rhuematologist specialsit for the hives as my bloods have detected a postive P-ANCA meaning hives and some symptoms could be overlapping into an auto-immune disease.

If your not happy with the consultants outcome then yes always seek a second opinion as you know your own body!

Hypermobility & fibro are a commen connected conditions
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Re: 20 year old looking for answers.

Postby GardenerJack » Fri Jul 13, 2018 10:11 am

Sounds like Fibro to me :-) You spend years getting tested and 'nothing wrong'... most down to nerve endings, so you end up ignoring it for the most part and getting used to the pain and inconveniences. The following solutions may not be right for you. Each case is slightly different...

Light sensitive eyes.... find a charity in your area (Optima in my area) who offer light filters. I have a 'light pair' @ 70% allowable light and they are good for over cast days and indoors, supermarkets, doctors surgeries etc. My darker pair are 40% light and worn outdoors. If it's very bright as it is at the moment, I also wear a broad brimmed sports hat... it takes away the glare from the sky, the top half of your vision and it means you can actually see when the sun is in your face.

Hot feet... I use an ice pack even when it's been no-where near the freezer. It can be used anytime when I'm at home, especially evenings... and at night! Rather like the opposite of a hot-water bottle. Do use a cover though, as, if you've frozen it for the night, direct contact will burn. I wrap mine in a towel and pinned in place for the night. This works really well and I've been able to sleep the last couple of nights... yay! :-) It can be used in the car (as a passenger) if you ease your shoes off and it eases things enough that my feet don't mind wearing shoes so much and 'behave' a lot more.

Find a group... facebook or such... start one if you can't find one... there are quite a few though. It's good to compare notes, to cheer each other up, share the good days or have a good moan. Just having people who are going through it too is a great help... sympathy when you need it... and a push in the right direction when you need that too.

Also, ask your doctor for a referral to a fibro clinic. This is a group, meeting weekly in my case, where for the first time maybe, that you can meet other people face to face, who have it. In my case, by the end of the seven week course we'd become friends and have our own group on face book with our first evening out meet up coming up. I have had this all my life in all probability, due to operations on my feet in childhood... have been tired and struggling to bring up two children and thinking I'm lazy as 'other people can manage it'... and I found I'd been doing things just a little bit wrong. I'd been fighting it... determined not to give ground, and getting very depressed with each new symptom turning up. I tried insisting I finish a job before 'giving in', I tried a set routine for housework... only to get depressed as I couldn't keep it up and got more and more behind. Developing Chronic Fatigue Syndrome was the result. At the clinic we were taught STOP. Instead of resting to recover, rest to get the energy to do things. We were shown lots of relaxation exercises, which, to my surprise, actually helped... though I have ones that are easier to do than others. We were shown why our 'batteries go flat', how even relaxing watching tv, knitting, reading, chatting with friends, which while they may be called relaxing, actually uses energy and aren't the right kind of relaxation for us. We were taught an awful lot more... a lot of people have dietary problems, those were explained too... it's important to understand this disease as much as we can... and have family and friends understand it for the support you need... so please do find one. There are more of us than you would think... I saw a stat the other day... there is a higher percentage of fibro sufferers than there are diabetics! It can be faught... but not necessarily in the way we think we need to.
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