27 with 7+ years of undiagnosed health conditions, now affecting my mobility!

confusednewt · September 2022

Hi.

I’m Newt. I’ve posted this within chronic pain and invisible health conditions because I think this is both with a lot of overlap and I’m looking for as much support as possible, as I currently don’t have much help in figuring out what’s wrong with me.

I’m 27 y/o based up north in The U.K.

For the past 7 years, dominating my twenties and rapidly getting worse as I near my 30’s, I’ve been riddled with chronic pain all

over my body that has gone undiagnosed or knowing what it is.

I’ve seen various GP’s throughout these 7 years, asking for help, asking for pain relief (over the counter paracetamol/ibuprofen stopped working around 15), asking for referrals to specialists and basically just trying to find someone that cares enough

to figure out what is wrong with me.

At present, symptom wise I am greatly struggling with chronic fatigue (and pain). My arthritis has flared and my wrists, knees, ankles and shoulders mainly (but all joints) constantly are week and struggling and burning and throbbing. Moving around anywhere, hurts and I’ve been using a walking stick daily for 3 weeks now. I am wobbly and weak joints when moving, so have to often wear wrist, knee and ankle supports.

I’m having daily irregular heart palpitations, worsened in heat which flares when washing and I overheat/sweat easily. I get brain fog all the time, I’m constantly fatigued.

I often feel dizzy and faint when standing for long periods, and my feet and hands get pins and needles or go numb.

I don’t ever, and cannot remember a time going back to a young child where I feel refreshed from sleep, each day I just wake up into another day of excruciating pain, with less spoons. I get PEM and doing tasks I used to do easily now wipes me

out for days/weeks/months depending on the level emotionally or physically.

I’m pretty housebound, usually room bound to bedroom or lounge because I struggle getting up the stairs in my home.

what I think it is, though of course im not 100% sure of as im not a doctor is classic M.E/CFS. I think there may also be some POTS. A friend has M.E and she thinks I have it quite severely. Another friend has hEDS and I’ve looked into it a little but can’t find out info on all the 13? Types and I can’t do the thumb stretches or a lot of the stretches and tests, because I’m the opposite I feel seized up, weighed down, like my hands and feet are constantly numb or tingling and I’m so stiff so I can’t stretch and move much.

so far GP has:

X Done full blood test

X Listened to symptoms and suggested fibro, ME/CFS but keeps just referencing to it as CFS. He isn’t 100-% it’s fibro as my joints visiblly swell and need constant support.

X Encouraged me to stay active and keep moving around?

X I have booked an adult needs assessment with my local council but 12 wait (can you be seen quicker?!)

X (01/09/22) - after telephone call today from me begging for help and support because this pain is overwhelming he said he will refer me to rheumatology, wheelchair services but said it’s years wait. I’m currently privately funding for a chair because I can’t wait that long I’m 27 and missing out on so much and recently lost my job to my health also, so am now relying on PIP enhanced daily/mobility and UC to survive.

I don’t know what to do, this is not a life and I need help and answers but don’t know who to talk to so am looking to find anyone whose experienced this and ask how they got help. I’d really appreciate if there’s any fellow northerners, with experience and recommendations as I struggle with travel far even within my city (Manchester) and have heard of right to choose etc but don’t know much about accessing.

I was told by an M.E support line gps can diagnose M.E/CFS but are often to cautious too, especially if you’re young. Are there any tips on how to encourage this diagnosis so I receive help quicker? Is there something I’m doing wrong? Should I pay privately for diagnosis? And what is adfordable and how long will it take and where is safe/trusted/ legit up north Manchester way? Can I be seen quicker by adult services for support at home/support with housing/potential home adaptations of rehousing ?

sorry for the general haphazard chaos of this post. Tried to do it between flares which wasn’t easy. Thankful for any guidance and sending solidarity to other sufferers,

I will post a more concise and accessible to read post with the majority of my symptoms below,

Thankyou

Newt

Binky1234 · September 2022

Maybe ask your GP to refer you a consultant who deals with chronic pain this way they will be able to do tests to diagnose stuff like arthritis, chronic pain syndrome/fibromyalgia, ME etc

I saw a rheumatologist whom diagnosed my fibromyalgia and arthritis after a serious of tests. Although I did have other health conditions and a few operations under my belt by then.

Good luck and I hope you get the proper care and diagnosed sooner rather than later.

Take care

confusednewt · September 2022

Symptoms (CP past 7 years but worse the past 8 months)

Frequent joint dislocations, joint pain and clicking/popping

All over chronic body pain (worst back, knees and ankles)

Brain fog

Dizziness

Pins and needles in feet

Chronic fatigue and feeling tired all the time

Difficulty walking unaided (use stick)

Trouble sleeping, getting to sleep and waking up in the night from pain

Trouble getting up in the morning, don’t feel well rested or less pain

Fast or irregular heart palpitations

Struggle getting up when seated and laid down

Swollen knees and ankles when I do walk and also in heat, both get worse when cold/rainy

Shooting burning pains up the backs of my legs when I walk

Excess sweating and trouble regulating temperature

Sensitivity to light and noise

poppy123456 · September 2022

Yes the waiting lists for help are ridiculous. I referred myself for another needs assessment a couple of months ago and was told there’s a 6 month waiting list.
I was diagnosed with fibro 10 years ago, as well as other conditions. It took me quite a few years to get that diagnosis and went through many different tests which included a lot of the tests you had.

I was diagnosed in the end by a Rheumatologist.

I’ve been to the pain clinic several times over the past 10 years. My most recent visit was before the pandemic and I waited a whole year for an appointment. When I went, I don’t even know why I bothered as it was a complete waste of my time. I won’t be going again anytime soon. My GP prescribes pain medication which I’ve taken for the past 10 years. It doesn’t take my pain away completely because nothing will do that. I just manage the best way I can.

Unfortunately we are not medical professionals so can’t give any medical advice.

For adaptions/aids around the home you will need an OT assessment from your local Authority. You can self refer for this but there is likely going to be a waiting list. You can refer here https://www.gov.uk/apply-needs-assessment-social-services
For social housing you will need to speak the OT when you have your assessment. If adaptions can be done to your current home then this will be what they will do. It won’t be easy being housed with social housing if you’re single, even with disabilities.

I don’t live in your area so can’t help with any suggestions of who to see.

In the meantime I would speak to your GP again to see if there’s any other medication they can give you other than over the counter ones. There’s no magic bullet though so please be aware of that. Good luck.

Wibbles · September 2022

I agree - I have been waiting 2 months for a CARE NEEDS assessment from my local council - the council do not even make it easy to apply for one - they hide the application process !

SueHeath · September 2022

Morning @confusednewt sorry just seen your thread, it's a very frustrating situation at the moment, with how long we are having to wait for the help with our chronic problems. The only thing i can suggest is keep going back to the doctors and trying different pain killers. Good luck

chiarieds · September 2022

Hi @confusednewt - & welcome to the community. As a long retired physiotherapist who has hEDS may I add to the useful suggestions above.

You mention joint dislocations, & these, or subluxations (partial dislocations), may indicate that hEDS could be suspected. I think it would be helpful to rule this in/out. Another way that may be helpful in finding a diagnosis may be to ask your GP to refer you to a musculoskeletal unit. Looking online, there may be one near you: https://www.manchesterlco.org/services/south-manchester-community-services/integrated-musculoskeletal-msk-pain-rheumatology-and-orthopaedic-service/ or https://www.manchesterlco.org/services/citywide-adult-community-services/musculoskeletal-msk-physiotherapy-clinics-central/

You may also find it useful to read up about Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder, & there's some good info here: https://gptoolkit.ehlers-danlos.org/ Remember that hEDS is the commonest form, with some types of EDS being very rare, so you don't need to read up about all the different types.

The more I read (medical papers), the more I find about similarities between hEDS & fibromyalgia, which may not help in gaining a diagnosis! I have many of your symptoms, but, as I also have neurological problems (Chiari 1 Malformation associated with Ehlers-Danlos Syndrome) then it's not straightforward, &, as I'm sure many of our members will attest, you can have more than one diagnosis at the same time.

I do really feel a musculoskeletal referral could be the way forward, as you could be seen by different specialists who could help maintain your mobility & refer you onwards if appropriate.

I do endorse what your GP says to remain as active as possible. I say this from going from treating patients to maintaining my own limited mobility.

Please kindly let us know how you get on.

confusednewt · September 2022

chiarieds said:

Hi @confusednewt - & welcome to the community. As a long retired physiotherapist who has hEDS may I add to the useful suggestions above.
You mention joint dislocations, & these, or subluxations (partial dislocations), may indicate that hEDS could be suspected. I think it would be helpful to rule this in/out. Another way that may be helpful in finding a diagnosis may be to ask your GP to refer you to a musculoskeletal unit. Looking online, there may be one near you: https://www.manchesterlco.org/services/south-manchester-community-services/integrated-musculoskeletal-msk-pain-rheumatology-and-orthopaedic-service/ or https://www.manchesterlco.org/services/citywide-adult-community-services/musculoskeletal-msk-physiotherapy-clinics-central/
You may also find it useful to read up about Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder, & there's some good info here: https://gptoolkit.ehlers-danlos.org/ Remember that hEDS is the commonest form, with some types of EDS being very rare, so you don't need to read up about all the different types.
The more I read (medical papers), the more I find about similarities between hEDS & fibromyalgia, which may not help in gaining a diagnosis! I have many of your symptoms, but, as I also have neurological problems (Chiari 1 Malformation associated with Ehlers-Danlos Syndrome) then it's not straightforward, &, as I'm sure many of our members will attest, you can have more than one diagnosis at the same time.
I do really feel a musculoskeletal referral could be the way forward, as you could be seen by different specialists who could help maintain your mobility & refer you onwards if appropriate.
I do endorse what your GP says to remain as active as possible. I say this from going from treating patients to maintaining my own limited mobility.
Please kindly let us know how you get on.

Thankyou so much for your message, I really appreciate this and will have a look into these resources.

I’ve been referred to rhumatology and am awaiting that, and also my councils exercise/healthy eating/wellbeing team for people with disabilities, I am just quite anxious to go because I really struggle with any form of activity and am very week, exerting myself above my base heart rate makes me feel really unwell and dizzy which can lead to PEM and another week in bed b it I’m hoping they will be understanding and not push me too far! I am so sorry you struggle with so much daily too, thinking of you

confusednewt · September 2022

SueHeath said:

Morning @confusednewt sorry just seen your thread, it's a very frustrating situation at the moment, with how long we are having to wait for the help with our chronic problems. The only thing i can suggest is keep going back to the doctors and trying different pain killers. Good luck

Thankyou, I think I’m going to try and contact my GP again as it’s so frustrating and isolating and painful

unfortunately even the strongest prescription painkillers don’t work on me, I’ve tried so many and have built up a tolerance to them, just have to lay down a lot and sleep through the worst of the pain. I will see if they can do any more referrals 🤞🏾

confusednewt · September 2022

Wibbles said:

I agree - I have been waiting 2 months for a CARE NEEDS assessment from my local council - the council do not even make it easy to apply for one - they hide the application process !

Hi Wibbles, I’m so sorry you’ve been waiting so long, it really is so unfair isn’t it for us to suffer, and so frustrating! I was told 12 weeks minimum wait for a council home needs assessment but haven’t heard anything since, but unfortunately we privately rent and I strongly doubt my landlord would agree to any infrastructure change I.e stair lift but I’m hoping they will be able to help me with grab rails/ perch stools etc to help make the house less inaccessible

SE9St8 · February 2023

confusednewt said:

Hi.
I’m Newt. I’ve posted this within chronic pain and invisible health conditions because I think this is both with a lot of overlap and I’m looking for as much support as possible, as I currently don’t have much help in figuring out what’s wrong with me.
I’m 27 y/o based up north in The U.K.
For the past 7 years, dominating my twenties and rapidly getting worse as I near my 30’s, I’ve been riddled with chronic pain all
over my body that has gone undiagnosed or knowing what it is.

I’ve seen various GP’s throughout these 7 years, asking for help, asking for pain relief (over the counter paracetamol/ibuprofen stopped working around 15), asking for referrals to specialists and basically just trying to find someone that cares enough
to figure out what is wrong with me.

At present, symptom wise I am greatly struggling with chronic fatigue (and pain). My arthritis has flared and my wrists, knees, ankles and shoulders mainly (but all joints) constantly are week and struggling and burning and throbbing. Moving around anywhere, hurts and I’ve been using a walking stick daily for 3 weeks now. I am wobbly and weak joints when moving, so have to often wear wrist, knee and ankle supports.

I’m having daily irregular heart palpitations, worsened in heat which flares when washing and I overheat/sweat easily. I get brain fog all the time, I’m constantly fatigued.

I often feel dizzy and faint when standing for long periods, and my feet and hands get pins and needles or go numb.

I don’t ever, and cannot remember a time going back to a young child where I feel refreshed from sleep, each day I just wake up into another day of excruciating pain, with less spoons. I get PEM and doing tasks I used to do easily now wipes me
out for days/weeks/months depending on the level emotionally or physically.

I’m pretty housebound, usually room bound to bedroom or lounge because I struggle getting up the stairs in my home.

what I think it is, though of course im not 100% sure of as im not a doctor is classic M.E/CFS. I think there may also be some POTS. A friend has M.E and she thinks I have it quite severely. Another friend has hEDS and I’ve looked into it a little but can’t find out info on all the 13? Types and I can’t do the thumb stretches or a lot of the stretches and tests, because I’m the opposite I feel seized up, weighed down, like my hands and feet are constantly numb or tingling and I’m so stiff so I can’t stretch and move much.

so far GP has:

X Done full blood test
X Listened to symptoms and suggested fibro, ME/CFS but keeps just referencing to it as CFS. He isn’t 100-% it’s fibro as my joints visiblly swell and need constant support.
X Encouraged me to stay active and keep moving around?
X I have booked an adult needs assessment with my local council but 12 wait (can you be seen quicker?!)
X (01/09/22) - after telephone call today from me begging for help and support because this pain is overwhelming he said he will refer me to rheumatology, wheelchair services but said it’s years wait. I’m currently privately funding for a chair because I can’t wait that long I’m 27 and missing out on so much and recently lost my job to my health also, so am now relying on PIP enhanced daily/mobility and UC to survive.

I don’t know what to do, this is not a life and I need help and answers but don’t know who to talk to so am looking to find anyone whose experienced this and ask how they got help. I’d really appreciate if there’s any fellow northerners, with experience and recommendations as I struggle with travel far even within my city (Manchester) and have heard of right to choose etc but don’t know much about accessing.

I was told by an M.E support line gps can diagnose M.E/CFS but are often to cautious too, especially if you’re young. Are there any tips on how to encourage this diagnosis so I receive help quicker? Is there something I’m doing wrong? Should I pay privately for diagnosis? And what is adfordable and how long will it take and where is safe/trusted/ legit up north Manchester way? Can I be seen quicker by adult services for support at home/support with housing/potential home adaptations of rehousing ?

sorry for the general haphazard chaos of this post. Tried to do it between flares which wasn’t easy. Thankful for any guidance and sending solidarity to other sufferers,

I will post a more concise and accessible to read post with the majority of my symptoms below,

Thankyou

Newt

Hi

This sounds like chronic fatigue syndrome to me as we have the same symptoms

Hope this helps xx

Starlingbird · February 2023

I have CFS and share the majority of your symptoms. Regarding your musculoskeletal symptoms, I'm wondering if a good physio/osteo/chiro might help to give you a thorough report? I say this because I have a very good one and he will write to my GP when necessary (so your doc can then forward you to the correct specialist) - it saves being sent from pillar to post and wasting months/years being sent to the wrong people!

27 with 7+ years of undiagnosed health conditions, now affecting my mobility!

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