Just been told I may have hypo-mobility syndrome, by GP, on top of that decided to check out some other things I am concerned about,,

Just been told I may have hypo-mobility syndrome, by GP, on top of that decided to check out some other things I am concerned about,,

Went to doctors about these little pin prick dots all scattered all over, I noticed them in November, I was so ill at the time it was the least of my worrying, thought I'd leave it see if they disappear , they didn't , GP said they were a ageing thing , couldn't et over it I'm only 44 ,, anyways whist I was there I mentioned my problem with walking, it feels to me although my hips and knees are wobberly and disconnected like I'm not walking on solid ground , after chatting and questions ! It was decided it most likely to be hypo-mobility, I came home checked it out, I all ready think I may have POTS syndrome , but not mentioned it to my GP because of fear of rejection , I found out its connected to Hypomobility which I feel that my theory of POTS wold be more creditable .

Later today,,,I also sat and did a dyslexia test because I seem to be as bad as my son he has dyslexia and has had it properly assessed , it came up the home test high, I then decided to take a autism test online ,,came up 38 which is autisim. This is all recent I never used to have dyslexia and never thought for a second about autisim. I feel really low.

I feel pretty, low , i seem to have a fear of hospital and dentist and now it's starting with GP,,, I just get concerned that all my theories are going to be rejected , i darnt even mention dylexia or autisim, they'll think , whatever next with this one.

. i don't like hospital ,,probably because I felt so let down by AnE at Scunthorpe they'd rest me like it was all in my mind.

I actually felt that I could of died in there, I was so ill, and in such a lot if pain, i could hardly breathe. i saw so much neglect and was left for hours before a doctor came to see me.

I have to go dentist next week, I have all ways had a fobia of dentist. Had a tooth pulled and was in pain for three days. . I have tori mandabulas.. It's extra bone growth in the roof of my mouth. Diagnosed last year. I hate going dentist because I'm sacred they will effect it somehow.

I'm low today and feel despondent with the NHS,, I've been treat pretty Poor.I'm saving to see a private doctor now. Don't get me totally wrong, I think GP is great for some things but rekon their hands are tied tbh. I am just starting to get despondent and feel like I daren't tackle concerns to GP anymore as I'm worried I'm not going o be taken seriously .

Im also aware of incredibly long waiting list to see specialists . Which is not helpful and not helping the way I feel right now. I have my epilepsy exam on the 12th it's taken some time coming , that scares me as I've been told they induce fits, the ones I've had left me feeling so bad .

On a good note ,

I managed to paint my kitchen wall today ,

That cheered me up for a bit. ,, sorry folks for the moan.. I just needed some online ears to keep me from feeling sorry for myself, my boyfriend doesn't give me his ears , he looks like he is not at all interested , which makes me loose faith,

I need that support , I spose it's because I'm there for everyone at home and make sure I never ignore their needs. Because I treat them as I like to be treat .

Tomorrow I will paint another wall, it makes me happy that I can do something . I'm not bk at work because I don't think I can go bk now. I have to sit loads in between stuff because my whole body just wobbles around, well it feel like it does, I'm not aware that I look like I'm wobberling . I'm trying to work my muscles to make them stronger as my GP says it helps.

Dies anyone know of any genetic factors of fibro, which race it is highest in , just out if interest , I'd like to know?

Thankyou people for listening to my pretty miserable blog, Joanne x x

17 Replies

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  • Hi Joanne

    Personally I would not take to much to heart with the internet 'Tests' as they can be a bit over the top with their results.

    My Wife and Daughter are both terrified of dentists but at last they have found one they have confidence in, they explained that they were scared and the dentist went out of her way to keep them happy and pain free. If your dentist does not do that walk out and find another one that does, they are out there.

    Perhaps I have been lucky but I have always had good GP's throughout my life and I have been along most of the South West Coast in my life so i cant complain but I do know some doctors are good with some patients and no good with others, why I have no idea. My doctor I find good but both my wife and daughter do not like him because he is abrupt, well I find that he gets to the point straight away and does not mess around with words. what is good for some is not for others that is for sure.

    I hope all goes well for you in the future with your problems they sound like a nightmare to me, but then again I am a coward.

    Take care and kindest regards

    Terry

  • I'm from scunthorpe too! X

  • Hi Honey

    Well done with the kitchen!

    Sounds like you have lots going on all at the same time. I am waiting for further hospital to have a full diagnosis if my condition is fibro and it's made more complecated as I have a known a genetic condition. I read on the sight all the time of symptoms that cross over many conditions.

    Some times we look for answers for ourselves maybe because those arround us can't see what we are going through or we feel we don't get help from doctors etc. But we always have choices even if they are not the ones we wanted to have.Remember if you feel a nuisance that thought can come from your own head-if it does forgive yourself . Don't forget there are people who understand and there always seems to be someone you can talk to here.

    You are working hard in day to day life-you painted the kitchen. looking for answers is very tiring and it might help to do some simple things that help along the way. -give yourself time off from the search sometimes-here's some \i tried:

    I eat no processed food at all-I am hypersensitive to many things.food chemicals.paint.silicon.etc.etc.etc. in everything.It makes me ill.

    Use natural sleep sprays only that have lavender in them.I get mine from a local lavender farm.

    I have trained my head to stop chattering so much when I can't find anwsers to everything/anything (Mindfulness-finding peace in a frantic world-Dr Willaims-see amazon)

    Have proper assessments for any conditions-remember whatever things turn out to be you are still you,the you you have always been.Guessing is scary and the internet gives too many links to I wonder if...

    If you are autistic remember so are many other people in vaying degrees,many without a dianosis.Maxine Ashtons books can be very helpful in practical support in relationships.

    Look after yourself and plan something each week to look forward too. Do learn new stuff and grow and carry on being you!

    Take care

    Gigi

  • Well done on the painting. I hope you remembered to pace yourself.

    I have HMS too and I was really surprised when my recently retired GP pointed out how closely HMS and FMS run together. It gives you a double whammy.

    I had a very abrupt GP at one point but he was the best one I have ever had :-)

    Hugs

    Jillyxx

  • My GP is always a bit 'short' too, and at first I loathed her, but we've become great friends now, and she is always very thorough - she just doesn't waste time.

    I agree that there's not much point trying to diagnose yourself online - there just isn't sufficient info there, and so many diseases share common symptoms that it can be very confusing and absolutely terrifying.

    Doctors do know what they're doing, and go through a structured process of elimination to make a diagnosis, so that they are very unlikely to miss anything.

    Fibro produces so many random symptoms that you could convince yourself you have almost anything - that's why it is so important to consult your GP if anything unusual appears.

    I know it's infuriating that we have to wait so long for everything in the NHS, but I have found that the treatment is usually pretty good, and is delivered to a high standard. You might not get too much sympathy, but they're so busy, and anyway that's what we're here for! :)

    Dental phobia is so common - I think it should be listed as a major anxiety disorder!

    Modern dentistry shouldn't be painful, and it's true that if you tell your dentist how frightened you are, they will do everything they can to put you at ease. It does hurt after an extraction, tho' - you need extra pain-killers!

    Torus Mandibularis is not a common condition, but it won't be affected by any dental treatment you need - it doesn't usually need treatment itself, tho' if the bony growths become large and uncomfortable they can be removed.

    Jo, when you go to see a consultant, don't be afraid to take a written list of things that bother you - it makes life easier for everyone, and remember that medical people get paid well to look after you, so never feel that you are taking up time unnecessarily!

    I hope you feel more cheery soon!

    Moffy x

  • Hi there, and well done you for managing to paint your kitchen, that is a real achievement. do pace yourself though and don't overdo it, I know from experience how one can think "well, that's good, so I'll just do a little bit more" and then a little bit more becomes too much and you end up feeling ghastly. I have this week bought a paint spray system, all the walls in my rented cottage have woodchip paper and when I last attempted to paint it was horrendous, so I'm hoping this will make the task much easier.

    I understand about the dentist phobia, I had one for years due to a drunk dentist , I didn't go for years and years. Then I moved down to Devon and had to see one because of toothache, I was shaking from head to toe, she took one look at me and said she understood how I was feeling and guess what, she has been so fabulous, I don't even give it a second thought now when I have to go for check ups or for anything at all. She totally gave me my confidence back. As others have given such good advice, I agree and say let the dentist know how scared you are and I'm sure things can change.

    Sending all positive thoughts your way :-) Foggy x

  • At least you have something positive to think about, at least you managed to paint the kitchen wall! Well done, thats more than I have been able to a mange in the past 20 years or more and I'm not much older than you.

    As much as love my GP he is the wonderful, but he like all the others I have had, never make diagnoses on anything more than the basics. All 'major' Diagnoses have to be made by consultants… well thats just my understanding and you have every right to ask to be referred by your GP. Thats what they are there for

  • Thankyou everyone for the good advise , gosh this site is Such a lovley thing to have, I actually feel saine again when I get replys . It's great to hear you all can relate. I managed to get up and paint around my windows , ver slowly and my friend is helping clean up and cook a dinner. Just having a helping hand is heAven. I will let you all know what my epilepsy exam comes out as. Just fingers crossed Dnt want to add another condition to the list . But at least I'm doing ok today , at the mo. one step at. Time . Thanks people your a tower of support to me. Had a little tear when I read the replys it's a happy one. Can't do a smily face so ,, heeeeee . That's my smily . I'm going to peel carrots now. I will put up a pic of my kitchen when I get it finished . I'm pushing myself only in respect to stop depression setting in and work my muscles ,, think its helping x x x as you all are x x x

  • Thankyou everyone for the good advise , gosh this site is Such a lovley thing to have, I actually feel saine again when I get replys . It's great to hear you all can relate. I managed to get up and paint around my windows , ver slowly and my friend is helping clean up and cook a dinner. Just having a helping hand is heAven. I will let you all know what my epilepsy exam comes out as. Just fingers crossed Dnt want to add another condition to the list . But at least I'm doing ok today , at the mo. one step at. Time . Thanks people your a tower of support to me. Had a little tear when I read the replys it's a happy one. Can't do a smily face so ,, heeeeee . That's my smily . I'm going to peel carrots now. I will put up a pic of my kitchen when I get it finished . I'm pushing myself only in respect to stop depression setting in and work my muscles ,, think its helping x x x as you all are x x x

  • Was it hyPERmobility? Hypermobility is a risk factor for developing Fibro and people with Hypermobility Syndrome seem to commonly have aspects of Dysautonomia

    This info may be of help if you haven't seen it:

    hypermobility.org/

  • Hi, thanks Lyndsey , I took a look at the link, interestingly Dysautomia seems as same as Pots, prob one of the same ,, I have all the symptoms totally for three years , in a more mild way,,,, before November when the biggi came on ,, , I looked into reactive Hypoglacemia , I treat myself for it with regards to eating. I quickly picked up . When I looked into pots ! a few weeks ago,,i found out that the treatment for pots is the same as that for reactive Hypoglacemia with regards to food. Seems I did myself a favour , if Pots is what I have . Which I feel it's a good chance . The pain in the chest was unreal I actually felt like my ribs were caving in. When I tried to move they actually cracked. It was the worst day of my life . Every time I layed back I thought I was passing out . I was scared I wouldn't wake up. That was the biggi,,,

    Oh well not going to dwell on it. I'm ok at the mo, n happy to feel on the mend in regards to that side of things. Happy in one respect, I hope it never comes back that way again. Always prepared tho,

    Gosh sometimes I dunno what to say , it's like it's been all a very bad dream.

    Thankyou for the link, I hope your well and not poorly at the moment , x x take care x x

  • I have hypermobility as well as fibro. I haven't got any tips but i can empathise with the feeling in the legs. To be honest i usually look like an oversized baby taking it's first steps when i walk (my 1 year old nephew walks better and faster than i do) thinking i should talk to the doc as it's getting increasingly worse but don't want to waste his time, or mine for that matter. Sorry you're having a hard time of it. Wish there was something i could do to help xx

  • Hi Trae, nice to hear from you. My GP told me to try work my muscles. I am trying its so difficult for me as I still feel extreme weakness everywhere and two days last week I slept for most of the day, and still went o bed at 10pm ,,so I'm trying to push myself .

    I'm sorry it's getting worse for you. How long have you had it, do you have any other overlapping conditions.

    You must go if its getting worse. Don't leave it, am a right one to say that as I'm under confident with doctors lol,,, but there may be something new to take to help. Is food a factor tho, what were eating may ave some effect. Please save me on your friends because I would Like to keep intouch . Maybe swap notes ect...

    One tip tho,, my bother,,said to cut out sugary foods, well I did that months ago. I don't know if it's helped much but anything is worth a try. I haven't had tremors since or fits. So maybe it's helped in someway.

    Take care ,,, Thankyou so much for replying to me, I do hope it eases somewhat for you ,,, xxx

  • Excersise can help though i can only manage stretches at the moment and walking leaves me so exhausted it's now in my cardio books haha. I've cut out most sugary foods but i don't find a difference. Strachy foods however can make a huge and unpleasant differance. I was diagnosed at the end of last year though they reconsider I've had HMS for most of my life without complications and that it's the fibro that's aggrivating it :/ id love to stay in touch but I'm unsure ob how to add friends xx take care jjojay xx

  • Physio can help stabilise the joints, if done appropriately. The basic idea is that you strengthen the small and big muscles around a joint so that they can hold it in place despite lax ligaments. Physio doesn't suit everyone with HMS, but I have always found it very helpful - it kept me doing yacht racing and skiing through Uni despite HMS :)

  • Wow,, that's ace,, if it helped you keep your active life. Great!

    I was offered physio after my knee gave out three years since. I didn't go because I was too scared to. I was in total agony and couldn't use crutches , so I used a weelchair, I felt with the crutches ,,,like my knee was just wobbling side to side and it was unbearable . Once I healed up which took so long I started gentle swimming back stroke seemed the easiest . And then just sat in the bubbles section , it worked a treat.

    Problem is now, I can't even stand to go in the swimming baths now, it's too cold for me. I rekon GP may send me to physio , if it continues to get worse, he did mention it .

    Wish there was a nice big warm pool , like you would have at bath temperature , that would be soooo lovley .

    x X x

  • Hi sorry You are having so many problems, I know how you feel back and forth the GP Office, they mst think I want all these ailments!! I to have Hypermobility its correct diagnosis is Elhers-Danlos-syndrome. Look it up and if ou have hypermobility you will probably find lots of other familiair ailements that run along side. My son also hasFibro (age 28yrs) and he was diagonsoed with EDS 10 years ago. It is a very rare genetic condition and causes problems with joint dislocations/sublacations, he has an dislocation on daily basis. It was only when I went in for a Epigastric Hernia that the Surgeon mention it cold be connected to EDS it lack of collegen in the body making joints unstable ect.

    Only a suggestion but I would ask to have referral to a Genetcisis as these are the only ones who can run the tests needed to cofirm diagnosis/ Crazy its genetic, I passed it on to my son which is 50/50% chance only to be diagnosed many years later. Also because its genectic if you have any children yourself they need to be checked out for it too! It can however skip generations by 10!!

    Well done on achieieving painting kitchen wall today. Best wishes hope you find the answers you are looking for. If I can help any please do not hesitate to contact me. I"ll be praying for you in meantime. God Bless Love Bettty Baby X

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