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Having physical issues

calflye

Hi, I hope this is the right category to post in. I've been having physical issues recently and I just feel like I need to vent about it as I have no one else to talk to and I'm worried that people will just see it as laziness.

I've been experiencing a lot of fatigue/tiredness. I've had this for years, probably since 2020 (at least when I noticed it) and just put it down to multiple things such as lockdown, mental ill health at times, school, college, work (when I did work) and other things. I no longer work and haven't done for a year and I haven't been at college for a year as well and I can't blame it on anything anymore and it's only been getting worse.

I went out today with my mum for example and we got my hair cut, went to my nan's, went Sainsbury's and home. Walked for a total of an hour (bear in mind I was at the barbers for an hour, at my nan's for about 4 hours and got the bus home). There is no reason for me to feel the way I currently do.

I say fatigue but there are so many more symptoms I experience. I get really bad joint pain (mainly in my legs and hips), weakness, brain fog at times, headaches, nausea. It feels like that kind of fatigue/tiredness that comes with flu, desperate tiredness. I feel desperate to sleep and I just can't sleep and I'm really good with not being on the phone, not eating before bed.

My blood tests are all normal too, iron, folate and other vitamin/mineral tests. Thyroid tests are perfectly normal.

I'm worried there has been something more going on all this time and I don't know how to tell my GP in a way that gets them to take it seriously and not just say things that dismiss it. It could be that nothing's happening and I'm being dramatic but I at least want to feel that my doctor is taking me seriously but I've always had issues with doctors and physical conditions (unless they can see it).

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Comments

john1980

Have u had covid bad ever?

Ostia

Do you think it could be chronic fatigue syndrome?

calflye

https://forum.scope.org.uk/discussion/comment/1027428#Comment_1027428

I had COVID in 2020 but I didn't have it bad in my opinion.

https://forum.scope.org.uk/discussion/comment/1027431#Comment_1027431

That's one thing I'm worried that it could be but I wouldn't even know how to ask my doctor to test for something like that (if there are tests for it).

JennieWren

You say you have fatigue and joint pain. When you were little were you very bendy/flexible/double jointed? Do you have stretch marks, other than what would be expected? My daughter has hyper mobility spectrum disorder (among other things). Her bloods etc always came back normal but at 17/18 she got really bad. For her I think the exhaustion caused her brain fog to worsen. There’s no cure but being aware and managing it helps. GP can refer you to rheumatologist for diagnosis and physio, especially if joints pop out. Just a suggestion.

calflye

https://forum.scope.org.uk/discussion/comment/1027433#Comment_1027433

Ah I do have hypermobility, I used to be very bendy/double-jointed when I was little but it's gotten a lot better with age in terms of how bendy I am. I didn't know that could cause a lot of fatigue and brain fog.

Ostia

It is a diagnosis arrived at by eliminating everything else. You can mention it to the doctor and they may run tests to check for other things causing your symptoms to eliminate them. Hopefully you will find it is something minor or perhaps a stress related condition...

All the best.

JennieWren

Hyper mobility spectrum disorder can cause loads of symptoms. I’m trying to get my daughter genetically tested for ehlers Danlos as I have scoliosis and had chronic fatigue since age 16, my cousin is often off work due to her joints and also diagnosed hasp, my neice also has joint issues and is now needing surgery on her shoulder where it’s dislocated so often. So definitely think there’s a link there. We had to pay privately (fortunately grandparents paid) to get her diagnosed and then an expert patient psychotherapist was recommended. An expert patient is someone with the qualifications, but also have the condition or a similar one themselves. She was brilliant at helping my daughter come to terms with it and sharing top tips. They explained that everything is a bit sluggish so has to work harder to get the same results eg breathing and digestion. So if these basic activities are making your body work twice as hard before you even get out of bed/chair no wonder you’re fatigued. All of your joints are kind of wobbly thus making your muscles work harder when you do move. Physiotherapy helps to tighten up loose joints as and when, but honestly she’s had no consistent care from nhs since the start of this journey. The biggest thing we learned was that if she ever gets pregnant NOT to have an epidural as she might not heal from it. I know she got in contact with a society who sell a reasonably priced ‘handbook’ which has been useful too, but unfortunately I can’t think of their name right now. HMSD also causes tougher skin so when having piercings and even her recent blood test it was commented on. If you do some research you might find some helpful info. I believe in USA it’s referred to as Ehlers Danlos Hypermobility, in the UK it seems specialists refer to it as HMSD but GPs still seem to call it ehlers Danlos. If I find the name of the organisation I’ll update you.

Sandy61

It could be Fibromyalgia, my Daughter has been diagnosed with this and your symptoms are very similar. Ask your GP to refer you to a Rheumatologist. I hope you can get this sorted

Jellihead

@calflye

About a month ago I had similar symptoms, exhausted, head felt it was in a vice, aches in my joints, very lethargic and generally run down. It took me almost three weeks to get the energy to walk and get my paper in the morning! I couldn't sleep either which is not like me. I was like this for about two weeks, took another week for the exhaustion to subside a bit, then another week to get some energy back. I have osteoarthritis, had a bilateral hip transplant eight years ago, so panic when I get pain in my knees, I really don't want to have a knee operation and my fingers in both hands are always painful.

After about a month I started to feel a bit better and the sun coming out, helped. Try and rest.

Kimi87

The ME Association has some information around getting diagnosed

https://meassociation.org.uk/me-cfs-symptoms-diagnosis/

They also have a helpline:

https://meassociation.org.uk/me-connect/

shirleys1961

It sounds like me in previous years. It took me 3 years to be diagnosed which I was in 2005. M.E and Fibromyalgia was my diagnosis unfortunately my specialist Professor Daymond has now retired and his patients given back to their GPs for care. I had to pay for a private initial appointment after begging GP for help. Keep pressing your GP for help with this as it takes a while for you to become accustomed to a new way of life. I wish you well for your future.

chiarieds

Hi @calflye - I think you'd be wise to go & have a chat with your GP even tho if there's anything going on it seems like an 'invisible disorder.' As others have suggested it could be one of several things, or hopefully nothing at all, but it's best to let them know about your concerns.

As far as hypermobility goes, then you can have this as it's fairly common & it might mean little, or the commonest type of Ehlers-Danlos Syndrome, which is the hypermobile type (hEDS) or Hypermobility Spectrum Disorders (HSD) 'may' be possibilities. You can find out more about these here: https://www.ehlers-danlos.org/what-is-eds/information-on-eds/hypermobile-eds-and-hypermobility-spectrum-disorders/

This is also an important read: https://gptoolkit.ehlers-danlos.org/

There isn't a specific gene(s) that is known about for hEDS yet unfortunately. Myself, children & grandchildren all have this, but we're all affected a bit differently, which can happen even with the same family.

To add to your reading list, should you wish, then there's info here about fibromyalgia, tho it's not very up to date: https://fmauk.org/what-is-fm-highlights-203