Undiagnosed and rare conditions
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Feeling unwell again.... And more recently I feel like with certain movements my bones

tracky1tracky1 Member Posts: 8 Listener
hi just needing somewhere to talk some things through.

Im been feeling rather unwell once more it’s odd how I get like this, it comes in these weird flares.
ive got one symptom or other every day and then have periods where they progress for a few weeks or days even and I feel worse. They lessen up and I have a few days weeks off lesser symptoms. Then I go through weird symptoms where I have to head to my bed because I feel unwell like I’m getting flu/virus but it doesn’t become full blown anything. It makes me feel quite unwell with slight temperature, aching legs, sore throat and feeling off being unwell with a virus.
This is the part of my illness I don’t understand.... to be honest I don’t understand any of it really lol 
I went to the doctor the other day as normal every 4 weeks as I’m signed off work at moment but that s another story, I’ve been suffering dull pain in my sternum I get this from time to time it’s inflamation and wanted it recorded on my notes she didn’t seem worried and stated once I have suffered the first bought of this inflamation it does come back... anyway I also mentioned I was worried about my neck being the reason for some of my ongoing dizziness symtoms., concerned That my MRI wouldn’t have picked up on my neck.  I suffer dull ache in the back of my head that I thought was tension and coincides with my head wooziness symtoms etc That can heighten with certain movement etc, she referred me to physio and gave me excercisea till then. I wish she had referred me for another mri but she said there would be no reason for that that the mri showed just below where I pointed to where I get the dull ache that it would mean the vertebrae’s out of line and that’s not the case so... I done one day off excercises and It set my motion sickness and wooziness back off again? Does any one know if this is normal, will it get worse before it gets better, I’m not even sure what I’m dealing with in my neck, it pops and clunks a lot too and my jaw partially dislocates evey time I yawn etc, vary annoying but at least it’s mobile.

back to my other flu like symptom this came on the day the same day as the motion sickness etc after I completed my neck excercises. but by nighttime I had taken to bed I don’t know if it’s related or a coincidence, I’ve been kept very busy this week with a sick bug that went right through our house and the husband and my two children came down with it I had. Lesser strain at the tail end I’m wondering if it’s some kind of weird malaise after the adrenaline peak. It’s not the first time I have felt like I’m coming down with something and have been taken to my bed with this strange illness of mine.

i know I suffer chronic fatigue and have done for years but wondering if I’m looking at ME rather? Would ME do this or fibromyalgia saying that I don’t have the wide spread pain wich is associated with this. I do suffer pain but it comes and goes depending on my injuries ie pulled muscles, back spasms, tendinitis, hand aches etc. 

The other symptom thats worrying me that me that no one seems bothered about is my legs and arm fatigue, I can’t walk up a flight of stairs without my legs getting sore, lactic acid pain and my arms do the same when there doing any repetitive movement.  My other symtoms I have discussed in length on another thread... I’m just baffled.

what am I dealing with? do I have some strange balance /vestibular thing leading from my neck that’s been unresolved for 2 years? but what of my other symptoms can they be related? 

Another strange thing that’s happening too, is with certain movement I feel like my bones slip, my hands can feel like the bones on top of my hand sprain? As do the bones on top of my foot, often I feel my knee pops slightly if I turn badly and I feel that in my hip too, I’ve felt it in my rib before too where it feels like somethings caught inside for a second.   It’s odd I don’t dislocate and never have done. 

Maybe this things making me turn  in to a hypacondriact wouldn’t surprise me. 

Sorry for for the long winded post, don’t seem to do anything simple lol
anyway it’s a new day and I feel a bit better this morning so I’ll move on and enjoy my day... Ive got family Sunday dinner at my mums today, another thing to be thankful for... no mess or dishes lol xx


  • CockneyRebelCockneyRebel Member Posts: 5,258 Disability Gamechanger
    Hi tracky and welcome

    We cannot give medical advice on the forum although other members may be able to associate with some or all of your symptoms

    Have you tried keeping a diary and giving it to your GP ?
    It is difficult to explain such complicated symptoms in a short visit even if you can remember all of them

    Be all you can be, make  every day count. Namaste
  • tracky1tracky1 Member Posts: 8 Listener
    Thanks CR, I’ve started writing things down on my daily Calandar for just that reason. 

    Sorry i I just realised reading back that I had asked specific health questions of you I am aware that you cannot give me any medical advice.

    thanks for the reply 

  • CockneyRebelCockneyRebel Member Posts: 5,258 Disability Gamechanger
    No problem, I am sure just writing has help you clarify some things and other members may be able to add some of their experiance

    Be all you can be, make  every day count. Namaste
  • AbilityInActionAbilityInAction Member Posts: 20 Connected
    Have you seen a rheumatologist? I have ehlers-danlos syndrome type 3 (hypermobile). It is underdiagnosed but typical symptoms include joints that sublux/dislocate (I mentioned it because you were saying about bone movement). Also, it makes me feel run down, gives me fatigue, causing aches and pains including headaches. Not an exact test but if you bruise easily, certainly worth raising the question. Google the beighton scale, you can see if you match any of the hypermobile symptoms. 
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @tracky1, thanks for sharing this with us. As CR says, we cannot give medical advice on the forum as we're not professionals, but I have M.E myself and many of your symptoms do sound like they match the criteria.

    Have you arranged to see your GP? It can be really helpful to keep an 'activity diary' to take with you, and make a list of all your symptoms. M.E Association also have some more detailed information on the diagnostic process which you may like to read. Best of luck and do keep us updated!
  • tracky1tracky1 Member Posts: 8 Listener
    Hi whisperer  I've been wondering about eds myself I score 6 on the Beighton chart not including my ankles/ feet that are also hyper extensive. I have overcrowding and a high palate, severe gum disease and  Suffer jaw issues. Have alot of small stretch marks and my section scar healed odd the first time and had to be fixed. Oh and i appear to habe difficulty with local aesthetic ( this symptom is no fun
  • tracky1tracky1 Member Posts: 8 Listener
    Sorry whisperer there was more to my reply that doesn’t seem to have posted well at least not that I can see so apologise if this is repeated. The up shot being I’m stuck as where I live things don’t seem to be recognised. No one mentions CFS let alone ME  never mind something as complex as eds and the rheumatologist I saw mentioned the hypermobility but seemed unconcerned. So I don’t think any one will listen. I’m being referred to a physio I’m hoping they’ll at least look at hypermobility  syndrome... it’s a start. 
    Eds isn’t genetic in our family, I don’t dislocate that  I’m aware off and don’t have some of the other major symtoms although I wouldn’t know if I have a problem with my heart etc. Although I might seem to fit the criteria with one major and the rest minor at a push. Chronic muscle/ joint pain I have although it’s not severe or constant. It’s more tendon pain and back spasms some knee pain, pulled muscles etc, that I suffer from. Can I ask if you wouldn’t mind sharing what your symptoms are. I suspect I would be mild if I suffer from the condition at all. 

  • tracky1tracky1 Member Posts: 8 Listener
    Sorry that reply was meant for ability in action my iPad seems to be jumping things up. Sorry again for calling you whisperer lol 
  • AbilityInActionAbilityInAction Member Posts: 20 Connected

    EDS isn't in my family either - but mine appears to result from a mutation.
    Everyone's experience with EDS is different, so whilst I am happy to share my experiences - it is probably better that I don't as it may concern you for no reason whatsoever. Where do you live? there are 3 specialist hospitals in the UK - so, you will need to be referral to one or other in order to be diagnosed.

  • tracky1tracky1 Member Posts: 8 Listener
    I understand no problem that probably makes sense.  I live in Scotland so I am not sure how far away anything is. Im assuming i can’t self refer? I can’t see a referel being given anywhere else at moment because nobody is willing to look further than where they already have all my tests coming back negative  I do understand this as at present I’m just a bunch off seemingly unrelated symtoms which vary from mild to moderate depending but collectively I feel point to something underlying somewhere other than viral which iswhere their lying their opinions on at moment. I’m going to continue recording my symptoms meanwhile and see where it leads me and await my physio and continue to pace myself. Im having a better week this week, the sun always helps right.
    thanks for the feedback much appreciated in this rather confusing time.
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