Joint pain and aches

[Potts22]

Hi all,

I had a laparoscopy last year and was diagnosed with endo. I've always had terrible period pains and in last 5 years or so I've started to have really bad joint pain, mainly around my fingers, wrists, ankles and toes, but sometimes my shoulders and neck hurt too. It comes and goes, and at its worst I can't really move well. I've been going through the NHS about this for a really long time and they haven't been able to find anything wrong in terms of arthritus etc. I'm wondering now if this is linked to my endo. It's something I've raised with doctors, but they have always immediately dismissed it. Does anyone else have joint pain? Thanks so much in advance!

[BattyForBats]

Hi, over the last year I've been having pain in my ankles, if I've had my feet up for a lomh period of time and when I get out of bed in the morning they are very painful and it takes a long time to feel like I can walk comfortably.

[Avourneen]

I've never had this but I have read many times that if you have endo you are much mrr elikely to develop Rheumatoid Arthritis.

creakyjoints.org/about-arth...

If you actually been properly tested for RA then it shouldn't be that but if your doctor has just dissmissed your symptoms without checking properly you need to get checked. You could print this off and show them they probably won't know that there is a link.

Good luck

[Potts22 in reply to Avourneen]

Yes, they did test me and all my blood tests showed its not arthritis

[Morty1984]

hi! I’ve just been diagnosed with Endo and I have awful joint pain in fingers, wrists and ankles. It all started when I started with endo symptoms so I reckon it’s linked but I’ve been fighting for an Endo diagnosis for all the pelvic, back, hip and leg pain I haven’t really even started on the joint stuff. Sending my best to you. This battle is hard x

[Potts22 in reply to Morty1984]

Thanks so much - I'm going to raise with at my next gynaecologist appt

[Potts22 in reply to Morty1984]

I've also had terrible back pain since Nov and my GP and Gynaecologist both dismissed it as being linked

[rb55 in reply to Potts22]

It took some months. But it also turns out he has long covid. So a long journey to go for him. I hope you get some answers. Keep pushing. I am trying an anti inflammatory diet now for my symptoms. I am hoping it helps everything calm down

[Potts22 in reply to rb55]

Thank you. I'm going to start that diet too. All the best.

[Morty1984 in reply to Potts22]

oh my back pain is horrific and it’s 100% linked. They found Endo on the ligaments from my uterus which causes back pain. It’s so hard when you’re constantly fighting for validation. Sending my very best to you x

[rb55]

Have you been tested for vitamin deficiencies? My partner had terrible pains and issues and he was low in folic acid and vitamin b12. I hope you find some answer soon

[Potts22 in reply to rb55]

Yes I was a little low but injections of b12 haven't made a difference and its been 5 months now. Did it take a long time for your partner to feel a difference?

[gatherings]

Yes, I do get joint pain & aches as well but so hard to pinpoint exactly what -- definitely worth investigating w/ your doctor(s), as some have mentioned RA/Rheumatology work-up to rule out other causes, vitamin definiciencies etc. could be quite a few possible things causing or contributing.

I do find since Endo affects the whole body and is inflammatory that my aches and joint pains will increase when I am flaring, however, it's hard to say if there isn't another issue contributing as well (thankfully my RA work-up was negative, but I'm glad to have checked it out) -- good luck to you and I hope you find some answers and relief! x

[Potts22 in reply to gatherings]

Thanks so much for the support

[BloomingMarvellous]

Assuming that your GP has done all the checks including thyroid and sex hormones and they’ve come back “ normal”. All that aside endo tissue change has been demonstrated to alter cellular receptors for some hormones causing a level of resistance. This can cause normal hormone levels in the blood but deficiencies at intra cellular level. Deficiencies amongst plenty. ( aka Thyroid , insulin and progesterone resistance particularly) This can cause the symptoms you’re discussing. Hormones just not being in relational balance with each other can be pretty uncomfortable. ( PMS anyone ??) . Often when lesions are removed it significantly alters our welfare as those hormone benders are reduced enough to make a big change. It really is that subtle.

There are also other potential reasons or combination of any or all such as a leaky gut where the single layer of protection in the gut is breached and inappropriate material passes into your system causing overall inflammation/ weird reactivity and similar symptoms. Hence the discussions around the necessity for gut healing being a priority. Often those with endo are also genetically those with a genetic predisposition to needing increased levels of Omega 3 ( NSPR1) which is crucial to gut integrity.

Next the increasing indications that a part of the endo development picture is a mix of infections. So there is noted increase in certain bacterial infections such as fusobacterium and klebsiella just off the top of my head : the later can alter our cellular response to lactose in the gut long term and mean we can’t tolerate lactose anymore. Doing a 48hr lactose tolerance test can give a fair idea on that one ( Dr Google has the details) . Running a constant high bacterial load will make one tired and ill.

Endo it seems actually ramps up our nutritional needs for more protein , more minerals more antioxidants. It’s seen by many nutritional therapists working in the endo field as a bit of a gobbler. ( Katie Edmonds book Heal Endo is brilliant at pulling a lot of the details on this in a readable useful way ) Being mineral and other vital nutrients deficient can make you feel pretty unwell to boot. The final insult all the garbage this lovely disease produces can overwhelm our poor excretion system and the liver overworking to clear extra hormones and byproducts of inflammation. Bit like the worlds longest hangover. Many of us also don’t help by not giving our kidneys enough water to do the job of flushing out the junk either. ( remember the edict of many a medic when you get an infection to ensure you drink plenty of water as a basic 🙄).

Looking for a single reason can be like searching for a needle in a haystack but instead finding the feeders of the problem can be a long term gain. Working to put the stack in your favour with a combo of therapeutic tools. For me that was surgery, thyroid meds, antibiotics, anti inflammatory diet, pelvic core therapy, coming off lactose , potatoes and eggs , drinking water like it’s a religious practice and actually using the App Curable to help my anxiety and stresses around the pain . I know that some of this is management stuff rather than “curative” but it keeps the awful aching at bay enough to live a life.