TATT ....anyone got any idea if thes... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,436 members66,487 posts

TATT ....anyone got any idea if these symptoms are related to ME or Fibro or Chronic fatigue or does it sound familiar in any way ??

happy_jo_lucky profile image
14 Replies

i'm new and I just wondered if there was someone who can help me, I have all these symptoms that have occurred slowly over the last 4 years, if you have familiar things please tell me.....

incontinence, dilated right eye, poor short term memory, numbness in left hand and twitching nerves, muscles that are so rock hard down the left side I seem to be walking with a limp, constant tiredness and I mean if I don't fall asleep when I feel tired I start to shake like I've been awake for days, I am also really off balance and always falling sideways.....I've been to my doctors and they told me I was anxious (because i'm a single mum of 3 children ) that's the first thing they pin on me ....i'm only 30 !! I don't drink (apart from Christmas etc) I used to train in martial arts and now I cant even go for a walk to the shops coz im scared incase I need the toilet so do all my shopping online, docs tell me i'm too young for tablets for my incontinence but in the mean time these things are still happening, I still drop everything I pick up with my left hand and sometimes I will just be sitting there and ill get a rush of adrenaline and my palms go all sweaty and my heart beats so fast like catching a moth and cupping it in your hands and it flapping to get out ....and I know you guys might think I have had three children never give my body a chance to heal ( like my mother is always sayin) but this all started when my youngest was 2 years of age....I was fit and healthy but something has changed...hope this makes sense guys coz I feel like the doctors are waitin for me to go into them with Depression and then they will treat me :/

Written by
happy_jo_lucky profile image
happy_jo_lucky
To view profiles and participate in discussions please or .
Read more about...
14 Replies
TheAuthor profile image
TheAuthor

Hi happy_jo_lucky

Welcome to the forum and I sincerely hope that you find it as useful as I do? What you have described are classic Fibro symptoms. However, incontinence is not one of them to my knowledge. I can easily imagine that after having three children that your bladder is somewhat stretchered and inefficient, whether or not Fibro can have an effect on this is beyond me? If any members know otherwise, it would be good to hear from them? I do not personally believe that you are too young for medication for incontinence and there is a very good drug called 'Oxybutynin Hydrochloride' that is very effective. That may be worth discussing with your GP?

There is something else that I would question, and this is the dilatation in your right eye? As this does sound like a completely different issue, unless any other member can come along and verify that they also suffer with this?

I have pasted you a link below for the FibroAction website list of Fibro symptoms and I hope that you find this useful:

fibroaction.org/Pages/What-...

I was wondering if there was a different GP at your surgery who you could discuss your issues with? If so, it would be helpful if you could get a referral to Rheumatology and a Pain Management Clinic. I can genuinely understand if you were feeling anxious and depressed as a result of feeling the way that you do? But please remember that Fibromyalgia can cause depression and not really the other way around.

Please keep us all up to date with how you get on?

All my hopes and dreams for you

Ken x

agtf1 profile image
agtf1

Hi & welcome to the site. As Ken says, a lot of your symptoms do sound like Fibro, however I would be concerned about the eye & weakness on one side. Can you see a different GP at your surgery for a second opinion?

Have you seen an optician about your eye? They may be able to give you some advice or something to go back to GP with.

Fibro is usually triggered by something and in my case it was triggered by IVF & childbirth and it took a couple of years for me to realise that it wasn't just the normal tiredness & aches & pains of being a new mum. With me it also began gradually and got worse and symptoms very similar to your own. My GP also tried to convince me it was depression, in fact I saw 5 GPs & got advice from NHS direct before I was finally diagnosed.

Try to see a different GP and ask for a referal to a rheumatologist, who will be able to diagnose you if it is Fibro.

Sorry you are suffering and hope you can get some help and answers soon. Good luck & gentle hugs x

happy_jo_lucky profile image
happy_jo_lucky in reply to agtf1

i had an ectopic 10 years ago, which the doctors didn't believe it was they kept telling me it was a miscarriage and to go home and put my feet up for a couple of days .....in 2010 i had the neighbours from hell they used to post things through my letter box and i was frightened because they threatened to petrol bomb my house and i woke up with my left side completely numb my hand was screwed up and sort of tucked in by my shoulder, he sent me for a brain scan but it come back normal, i was also working so had to just grin and bear it even though i knew my health was going down hill....that's when it all started, i even got pulled in for a disciplinary because i was up and down to the toilet away from my desk, but at the time i wasn't under the gynaecologist so didn't have a good argument, when i think back i wonder if these are just the cards we have all been dealt

Boronia profile image
Boronia

The Drs probably are waiting for you to go in with depression and then they'll give you anti-depressants.this is what they do when they don't know what to do and don't take the time to find out. I don't think at all that you never gave your body time to heal! I think the advice above is good-you need a referral to rheumatology at least. I would also try to get bloods done for thyroid, B12, D and iron and see are any of those low. Please when you get your results get a printed copy and post the results up here-Drs love to tell you your results are "normal" but what many people with Fibro or Thyroid problems find is that they are better if results are "optimal"-we need everything possible doing well to help us to be in the best health possible.

happy_jo_lucky profile image
happy_jo_lucky in reply to Boronia

i never get copies of my bloods i didn't know i could ask for them but i will ask in future, there's been times where my platelets have been very low but he didn't tell me what they meant he just wrote me a prescription for iron tablets :/ i have been oblivious for years but i'm sick of it now, i'm very aware of the fact i am not a healthy30 year old woman

Betty67 profile image
Betty67

Do hope you get the help you need soon, perhaps you need to change your GP? Of course you are anxious but that does not mean that caused your problems. How can you be told you are too young to be treated? Cross on your behalf.

I was also told in my earlier 30s that I was not as young as I use to be and although true did not mean that I would be less fit than some 80 year old people.

You need to look after yourself so you can look after your children.

Jacqueline

Jjudith profile image
Jjudith

Yes, I had a dilated pupil in my left eye, with eye pain. I kept going to the eye hospital with it, about it but I was told that my eye was fine, it was probably always like that - I was 64 and I had looked at myself in the mirror a few times, and even had some photos of me when I was younger with my eye pupils clearly visible and equal. Eventually it was found to be due to myofascial pain syndrome (MPS), which 70% of people with fibro have. Yes, my left side is much worse than my right.

Re my eye - they eventually operated to change my lens for an artificial lens, the same as cataracts but I didn't have cataracts, and after that it was fine. I was pleased not only for a good result, but also because one doctor told me that my eye was fine and did I want her to make up a diagnosis to satisfy me????!!!!!!! So I felt vindicated when I eventually had a diagnosis.

Re my bladder - myofascial pain affects the fascia of muscles and it can affect the pelvic floor, causing incontinence and Interstitial Cystitis. That might be why you can't hold urine. Maybe the short term issue is to try to get sent to a clinic for incontinence and they can give you exercises and maybe pads for short term. Long term, I had an op for incontinence which has helped, and as my bladder was inflammed with pain and urgency I changed my diet to one that is on the Interstitial Cystitis Network - its a US site but very useful.

Re everything else - I found that a lot of my symptoms were due to sensitivities to medication, so I came off all medication, use cold packs, hot packs, massage, trigger point massage, meditation, Alexander Technique, TENS, Interstitial Cystitis diet, I do yoga and pilates to stretch my muscles to stop them going into spasm, I use mouth frames for face pain. It seems to me that maybe your main issue at the moment is MPS but it is rarely diagnosed in national health services, you need to go private for a diagnosis, such as to see Chris Jenner at the London Pain Clinic. But most single mothers can't afford it.

I do really feel for you, my major problems started after I had had a career and my children were grown up. I don't know how I would have coped with young children. But you are doing amazingly well just keeping going and not giving up. I think you are wonderful. Good luck with everything, and lots of hugs x

happy_jo_lucky profile image
happy_jo_lucky in reply to Jjudith

yes they told me that 10% of the population have a dilated pupil they told me this whilst only using routine eye equipment the minute they took a photo they found a freckle at the back of my eye, they have now decided to monitor this every year, but are still sticking to me always having a dilated eye

Jjudith profile image
Jjudith in reply to happy_jo_lucky

Most doctors think they are always right - there are exceptions, but not that many unfortunately. At least they are aware of the pupil issue and they are following things up. x

rodee profile image
rodee

ask your doctor to send you to the local M.E. clinic. They are often situated in hospitals and from my experience (Bath) their support has been amazing. Your symptoms appear to be in the same vein as M.E./fibro.

happy_jo_lucky profile image
happy_jo_lucky

Thank you for all of your kind words I appreciate everyone's replies ( didn't think I would get any)

I have been going for blood tests for the last 15 years and I always seem to have either low blood count, low iron, low vitamin B12 the docs give me ferrous sulphate then I go for more bloods, I can't absorb the iron so they give me folic acid to help but that's it, I even try eating chocolate jellies anything to give me an hours energy.....i'm under the clinic for women's health and I've just received a letter that's been sent to my doctor saying that I don't empty my bladder properly and we discussed self - catheterization :( now given the circumstances I think I am entitled to feel depressed slightly, I want to know what do doctors actually learn at medical school because they don't seem to know much about health and illness.

i got no one......me mother thinks that i'm lazy and me nan thinks no one can be more sick than her....my friends my age all have jobs and hit town nearly every weekend..... i should be doing my A levels in psychology this year but my health has to come first or on par with my kids.

Thank you again everyone

Iampain profile image
Iampain

Dear Happy Jo lucky, please don't worry about catheterisation, they have to know you can do that, before they can offer any surgery. It sounds like you may have a slightly prolapsed bladder. As for the other problems, I agree you need to be referred to a. Rheumatologist, if your doc refuses, get a new doc!

Jan

Nita7 profile image
Nita7

Dear 'happy', I am upset that doctors in the uk get away with this approach towards patients. Why do they ignore the patient's complaints! It is your body, you know how you feel. Fortunately there are forums like these that you can get input from people in similar positions. Keep yourself tough and know you are not alone. If they do not want to help you, go to another practice. Keep notes about what you said and their responses. You can always use this to strengthen you case. Do not wait to get the treatment you need! Do it for yourself, you deserve to feel better (at least)!

With kind thoughts and a special hug. x

mitziblue profile image
mitziblue

I have some of those symptoms. The rock hard muscles that won't relax, the fatigue, short term memory loss, different eye troubles, loss of strength in hands, depression, anxiousness, rapid heartbeat, plus others like something ( like a bug bitting me ) when nothing is there. I also had numbness, and a limp this was due to a ruptured disk in my back. All other problems are due to Fibromyalgia. Hope this helps you. If you have more questions for me just ask.

You may also like...

does anyone using this forum have joint pain but none of the other symptoms of fibro (ie the fatigue, muscle pain, headaches etc?)

tender, burning, tingling sensation. The palms of my hands become roaring red and the veins bulge...

Does anyone else find their fatigue is their worst symptom?

down, later afternoon, early evening, and often fall asleep again for anything from 15 minutes to 2...

can anyone tell me if chronic pain syndrome is the same as fibro please?

same as fibro as i am on lots of meds ect and have all the same symptoms as fibro thanks x

Does anyone get really bad tingling lips and legs give way at times with fibro x

lips at times and on ther occasions my legs go like jelly and give way its really bugging me

Does anyone know of any studies or research to see if there is any connection between fibro fog and any sort of permanent brain problems?

I'll tell you why I'm asking, just had row with Daughter, (yeah, another one), about how much stuff...