start of my journey

[Leafern]

I haven’t got a formal diagnosis and am still waiting for a referral to neurologist following MRI. MS has been ruled out but I feel like I’m going mad and no one believes me. I have altered sensation/numbness/tingling on my right side head to toe, poor bladder function, brain fog, pain in both hands and feet worse in the morning and horrendous at night or if I sit for too long. Restless legs and cramps. Also pain in my shoulder blades and lower back. Blurred:double vision. Amitryptilline made me feel like a zombie and didn’t help so stopped that and am now on NSAI and paracetamol. Tried to lose a bit of weight and be ‘healthier’ but just feel like I’m sinking deeper and deeper into a black hole. 😢

[Fadeddenimcutoff]

Sounds similar to my symptoms, im finding that many drugs just add to my problems, exercise is very hard to manage/keep up as it generates more pain. Sleep is a massive problem as getting regenerative sleep is nigh impossible. Im trying to stick to simple routines, eat less, light excersise (walking), meditating and breathing exercises. The only thing i find really helps with the symptoms is cold showering🚿.

Hope you find balance with your symptoms.

[Yassytina FMA UK Volunteer]

Hello I hope that appointment comes soon as can understand how you must be feeling, when we eventually get a diagnosis from the medical profession it actually starts too sink in with family ,friends that we are differently not making things up , shoulder blades,lower back can be my worse points of fibro pain, I get husband too rub bio freeze or something similar to ease during the day, (but always check with your pharmacist if on any meds) diffo a soak at nite in the bath, old fashioned but when I’m resting at night couple hot water bottles. It seems so unfair that ,Amy people here not only have fibro but other health conditions, keep in touch with your doc /practioner nurse if your starting too get down, we all need to share sometimes how we are feeling and don’t be afraid too ask for help, sending hugs x

[Leafern in reply to Yassytina]

I’m trying to carry on working (I’m an ex nurse but a self employed carer now) but I’m just exhausted and it is so difficult to motivate myself to get going in the mornings. I can feel my mood becoming lower every day 😢

[Patdoyle]

I waited 4 months for a neurologist appointment and then it was a telephone one. They are very busy

[Blunderwoman74]

totally get how you're feeling. Fingers crossed you get some help and results soon. It's the not knowing and being in some kind of medical mystery pergatory. Your not going crazy. I had my diagnosis 6months ago and feel I still don't understand it. Pain is the old bone song and each pain is connected to the next!

We are all here to talk and if you ever feel alone or hit a wall, there is lots of us on here. I know I don't really use this like I should but my eyes determine what I can read and correctly type. Xx

[Jaycee18]

I think a lot of us feel like we are going mad at times, how can one condition cause so many random symptoms - but you can see from this site that it does. So we believe you.

I didn’t get on with amitriptyline either, but my GP has given me sertraline instead. I think it’s a similar drug but seems to suit me better. It does help me sleep a little better which is important. The best advice I was given was to take it in the evening at least 12 hours before I wanted to feel human the next day as this type of drug does seem to make you feel groggy. If I’m ever late taking it I can feel it the next day.

Gentle exercise does help me, I try go to a couple of Pilates classes a week and always leave feeling a little better than when I started and they are also good for my mental health.

Self care is important so look after yourself and don’t push yourself too hard. If you do feel yourself getting low, please talk to your doctor x

[Lilibet26]

Hi, my symptoms are exactly the same, I’ve just learned to live with them somewhat as no pain killer is totally effective and have unpleasant side effects which we definitely don’t need! I do try other none medicinal things. I recently discovered vagal nerve stimulation and it’s had a very positive effect. I use a Sensate to deliver it (just Google it) it’s helped my sleep be better, deeper and more restorative, in turn lessening fatigue and fatigue related pain. I hope it helps

[Bostonterrierlover]

I'm so sorry you're having all these problems. One thing you could check out if you haven't already, is B12 deficiency. The Pernicious Anemia Society on Health Unlocked is a great group, and the members are very helpful.

[Leafern in reply to Bostonterrierlover]

thank you 😊 the first thing the GP did was various blood tests but I’m thinking I might ask about inflammatory markers and immunology…seems crazy to me that they say it’s a process of elimination but haven’t done all the blood tests to rule out other things 🤷🏼‍♀️

[Bostonterrierlover]

Unfortunately, sometimes the blood tests for B12 will come out in the "semi" normal range and the doctors disregard it. It may be worth a try just to go over to the PA society group and check it out. They are just such nice people similar to the ones here, who have suffered a lot themselves. Anyway, whatever you do I wish you all the best 😊 Take care!