Please... Help is it possible i have fibromyalgia as well as hypermobility?

[Tnt88]

Suffering with mental and physical pain for years... my whole body hurts always ... I have hypermobility, ive never had this much pain from being flexible, it's getting worse over the years. Its started aroundmy late 20s and has got worse and worse spreadingover more of my body. My back knees ankles hips.. headaches.. migraines... I'm exhausted all the time but can't sleep a full night. And on the rare times i sleep a solid 8 hours im still exhausted.. I'm diagnosed bipolar and EUPD have bad anxiety I just can't cope with this much longer, I need help to know what's wrong with me... no medical professional I've seen helps, Dr's, physiotherapy, specialist physiotherapy, surgeons for ligament rupture (without a injury) ... all blame hypermobility with no answers or action plan apart from being told it will get worse and I'll be wheel chair bound in 10 years... its getting worse with no answers to why 😭

If you got this far THANKS

Anyone have any suggestions??

I've had mri's xrays and blood tests nothing 😢

[Yassytina FMA UK Volunteer]

Hello, I am very sorry too read what you are going threw, have they checked you for fibromyalgia? as well or are they putting all your symptoms down too the hybermobility? , Doctors normally refer too a rheumatologist too check for Fibro , im guessing your current doctor /surgery are not helping you very much in order for you too get some answers? Xx

[Tnt88 in reply to Yassytina]

Morning 👋I've seriously been push from pillar to post, backwards and forward, up and down and back again. 😖😡

They have ruled out alot of things with blood tests, xrays and MRI scans and I've now been referred to Rheumatology, my guess is a good 6/8 month waiting list 😔

Anyone that seen me assumes it's the hypermobility, however it's extremely rare for that to suddenly get worse with age it normally gets better..

I'm at a loss tbh

Thanks for your reply

🥰

[Yassytina FMA UK Volunteer in reply to Tnt88]

I really hope Rheumatologist has some answers ,you are right now and have been seriously threw the mill 🙁and NHS waiting lists are so long. I can feel for you and being at a loss is more than understandable xx

[Tnt88 in reply to Yassytina]

Thank you xx

[Givemestrength65]

hey! I was diagnosed, by a Rheumatologist, with joint hyper mobility many years before I was diagnosed with fibromyalgia. I suffered years of widespread joint pains and my posture and joint movements were always more extended than that of my peers… I used to be athletic and also spent my school years training vigorously and competing in gymnastic competitions…(if I knew it would cause so much pain and problems in my adult life I would never of taken up that activity)… I was in constant joint pain, slept badly, stomach problems. ( I could go on…), but I continued with strenuous physio to try and keep my joints moving (I was told that exercise was good for joint stiffness!) I was eventually diagnosed with osteoarthritis once I hit my mid forties and finally fibromyalgia 10 years later, again by a Rheumatologist (that’s when everything finally fell into place as I was struggling for years and literally driving myself to despair as I thought no one was understanding what I was going through)…so in my experience the answer to your question is Yes! Do ask for a referral to a Rheumatologist

[Tnt88 in reply to Givemestrength65]

❤️❤️ thank you for sharing.. I'm sorry you went through this but it somehow nice to know I'm not alone, I'm waiting on a rheumatologist x

[clifetta]

I was diagnosed hypermobile at the same time being diagnosed with fibromyalgia. I understand your pain, i hurt from my neck to my toes everyday. I dont sleep more than a couple of hours a night and thats in 20 minute sections so I am tired all the time too. Fibro does not show up on blood tests. Ask your gp to refer you to a rheumatologist and hopefully they will give you some answers good luck

[Tnt88 in reply to clifetta]

I'm sorry you feel this pain too... being tired all the time doesn't help.. I find the more tired I am the worse the pain and stiffness is, I am already on the waiting list for a rheumatologist, I only got referred about 6 weeks ago so will be waiting awhile yet 😔 thank you x

[Dinkie]

NHS waiting times are so long, even before covid I waited 18 months for a six week follow up appointment. It may help to phone the rheumatologist's secretary and say you are happy to accept a cancellation appointment. That's how I got my original appointment, only got 2 hrs notice but was determined to take the cancellation.

[Tnt88 in reply to Dinkie]

It's such a long wait for anything these days, I will definitely call tomorrow and say I'm willing to take cancellations .. thank you x

[klr31]

Hypermobility and Fibromylgia can go hand in hand. Have you checked your vitamin D levels?

Karen

[Tnt88 in reply to klr31]

My vitamin D level is okay at the moment, but I have previously been prescribed meds for a deficiency? X

[CM1EDSUK]

Hi - totally agree that hypermobility & fibro can be comorbid; in fact the 2 are found quite commonly together. Now I can only speak as someone who has the hypermobile type of Ehlers-Danlos Syndrome (hEDS), &, similar to yourself, well in my case at the age of 20, was told I'd be in a wheelchair by the time I was 40, but that's not happened, & I'm now considerably older.

I have to say I don't know where you've heard that with hypermobility it's 'extremely rare for that to suddenly get worse with age it normally gets better.' Unfortunately that's not the case, altho everyone is different, as with all disorders. I think it stands to reason that hypermobile joints can cause early onset of osteoarthrosis as the excessive joint movement is similar to the normal 'wear & tear' that can cause osteoarthrosis usually later in life.

As a long-retired physio, I'll add that I didn't get diagnosed with hEDS until my mid-forties after my own research into my problems. What has certainly helped, as it does with fibro, is daily gentle exercise & pacing. My problems have increased, but exercise, as well as the many things that those with fibro use such as distraction, mindfulness, etc. really can help.

Hope you get to see a rheumatologist soon; it really is a good idea, as already mentioned, to say you're willing to accept a cancelled appointment (secretaries can be your best friend!)

Kindly let us know how you get on.

[Winter_night]

Hi, I agree fully with others who have advised that hypermobility and fibromyalgia go hand in hand. I was told that in no uncertain terms by the rheumatologist who diagnosed me with hEDS. It isn’t a case of which, they tend to go together. It’s not correct for you to be told it’s unusual for hypermobility to get worse suddenly; there can be a trigger and for many, including myself, covid (delta) was the trigger. Again I heard this from the rheum who diagnosed me. It’s difficult to know which of the two (hypermobility and fibromyalgia) is worse but one thing is for certain… living with both is extremely challenging. The unfortunate reality right now is there are virtually no specialist NHS services for people with hypermobility of the less serious kind (ie not vascular EDS or other rare and complex types) and the expectation seems to be that we and our GP’s deal with it in primary care, often with the patient knowing more than the GP. Perhaps a start might be to look at the hEDS info on the EDS society website. It’s a really good resource and you can download the diagnostic checklist there to go through with your GP if you haven’t already had an EDS type diagnosis but think you meet the criteria. Sorry if I’m telling you what you already know, by the way! PS anxiety also a well established comorbidity…