Extreme Muscle Fatigue with EDS

[KAGarcia]

Hi everyone. I’ve gotten to the point that any type of activity or walking or cooking etc produces extreme muscle fatigue and all I want to do is curl up and not move. I think the pain and fatigue is equivalent to flu body aches. Does anyone else have this and if you do- what in the world do you do to make it go away and how do you endure activities. I’m trying everything with supplements etc but I’m just upset that I can’t function like I used to. I’m starting to think it’s not due to EDS.

[Taurea]

I experience exactly the same. I think it probably is EDS/hypermobility. The only thing I'm not sure about is why. I have leg and arm weakness and I've been told it is due to deconditioning. I try to walk a lot and be active but I simply ache as if I've done a high intensity aerobics class for the first time. Even after weeks and weeks of regular walking I still ache and feel weak so I'm not seeing any improvement to muscle strength or stamina. It makes me question the deconditioning explanation but I don't doubt it is to do with hypermobility. I'm planning on joining a gym and going to really try to get fitter through swimming and maybe some Pilates because exercise (and pacing) seems to be the only real suggestion from the experts. If it doesn't work at least I know I will have tried and it won't be because I'm lazy which is what I feel they are saying to me when they use the word "deconditioned ".

[KAGarcia in reply to Taurea]

Thank you for replying. It’s just so odd. I would explain my pain to be exactly the same. There has to be something that is causing this... even if it is EDS it’s just an odd symptom to have every single time of exertion it activity. I’m trying to work my way up to walking again.

[EOLHPC]

Hello KAG. many of us have autoimmune primary comorbidities simultaneous with hEDS. eg i’m 65 and am diagnosed with both infant onset systemic lupus and the CVID type of Primary Immunodeficiency Disease. Your description seems very autoimmune to me - there are types of autoimmunity that can underly the symptoms you’re describing eg myosotis. Have you been investigated for this sort of thing? Here in the UK Rheumatology would usually look into this....eg perhaps MCTD inc a form of myositis is involved:

lupusuk.org.uk/wp-content/u...

en.m.wikipedia.org/wiki/Myo...

My life of diagnostic uncertainty has taught me we both deserve and qualify for investigations re underlying causes when symptoms are as specific & persistent & progressively severe as those you’re describing...often the health establishment expects us to have conscientiously tried all possible first line treatments & self help/lifestyle management before it’ll refer for care secondary investigations, and i sense you’ve been doing all that first line stuff for some time without significant benefits. Have you talked to your gp about this?

🍀❤️🍀❤️ Coco

[KAGarcia in reply to EOLHPC]

Yes. All autoimmune markers have come back negative except a fluctuating ANA titer and CH50 complement which is inflammation marker. So they say negative for autoimmune but check yearly.

[EOLHPC in reply to KAGarcia]

Ok, glad they are taking these manifestations seriously enough to check these levels annually.

Am sure you know diagnosing autoimmunity is not only about ticking inflammatory marker blood test boxes, eg, for what it’s worth , here’s a bit about my profile eg i meet official clinical & immunological criteria for SLE & sjogrens even though i’m sero negative because my type of Primary Immunodeficiency (the CVID called panhypogammaglobulinaemia, ie below ref range immunoglobulins G, A, M (IgG, IgA, IgM)....this means i am actually unable to make autoantibodies and antibodies to pretty much any infection at all (bacterial, viral, fungal). But i do have chronically low lymphocytes (a type of whit blood cell which tends to be low in lupus & sjogrens) and my C4 is low too - also characteristic of lupus.

[Ell17]

I agree with Barnclown. Though hEDS isn't autoimmune, it is systemic, progressively degenerative and can set us up for autoimmunity. You are born with EDS, but autoimmunity is something that is triggered. Any type of autoimmune disease is going to further aggravate hEDS and vice versa (vicious circle and all). I have several autoimmune illnesses, as well as hEDS. I'm 51, and as I get older I find hEDS to be meaner than ever:/

While it's true that many other illnesses can cause fatigue and muscle pain, hEDS alone can cause this. It doesn't need any assistance. We ARE collagen. And if it is defective and weak, the problems that are wrought can be endless. In essence, your muscles are having to work overtime at a job they were never meant to undertake alone. (Muscles are supposed to work in concert with stable, strong joints, ligaments, and cartilage.) How could the poor things not be exhausted?

Also, collagen is our body's girdle that keeps everything pulled in and up. (And we have all experienced the effects of poor quality shape wear. ) Muscles can't really do much for that. That truly is a job for healthy, strong collagen. Add in a weak pelvic floor muscle (that just can't be strengthened enough no matter how many kegels you do, because of sagging organs constantly bearing down on it) and bladder and a whole host of other issues can arise.

The muscle/joint pain and fatigue can be crippling at times. Over the years of trial and error I have found the following to at least offer a modicum of relief:

*First, do what you are able, but don't overdo. You'll regret the overdoing. And don't let others make you feel guilty about it. Stand your ground like you would for a friend/relative if they were in your situation.

*Keep electrolytes balanced (magnesium malate, potassium citrate, salt). When experiencing muscle spasms/pain take extra potassium (4700 mg potassium needed daily through diet and/or supplements.)

*Take 1000-2000 mg Vit C

*Alpha Lipoic Acid and Vit B1 (Thiamine) can help with muscle energy and also nerve pain

*Take a balanced B Complex formula (in addition to the extra B1). A methylated formula with methylcobalamin and folate (not synthetic folic acid). Methyl means it's ready for the body to use and doesn't have to be converted.

*D-Ribose (energy)

*L-Carnitine (muscle energy)

*Whole foods diet, healthy fats and good protein

*Stay hydrated. Dehydration exacerbates muscle pain/spasms.

*Get as much rest as you can. Your body struggles with issues that the average, healthy person's body (if that truly even exists anymore.... debatable for sure 🤔) doesn't have to. You can only do your best. And that has to be good enough (even if others sometimes give you a hard time over it.)

*Try to find new ways or things that you can do that don't exhaust you, but help balance the shift in what you're able to do now vs. your past capabilities. This can go a long way in smoothing ruffled feathers of those who may complain that you aren't pulling your weight....Which would be a non issue if more people would figuratively put the shoe on the other foot.

There is a steep learning curve to dealing with all of this and far too often we are on our own That's why forums like this can literally be life savers. And the folks and advice on this one are top notch, in my opinion.

Hope some of the suggestions work for you.

Very best wishes.😊

[KAGarcia in reply to Ell17]

Thank you for all the suggestions. It’s just hard to accept that I get really sick from simple things when I know I’m capable of more but my body is just angry with me. (Sigh) thanks again.

[Ell17 in reply to KAGarcia]

You're welcome. And know that your struggles are just the brass tacks of adjusting to a new normal. There will be quite a few lows. But, you'll slowly learn how to tune in to and listen to your body and things will become more manageable. I view it in the terms of "it is what it is; and, you have to figure out a way to deal with it in your own way and on your own time table."

It can be hard to reconcile the past you with the present you. The limitations are especially difficult to cope with when you're young. But, none of us are lesser people because of illness. Once we can all wrap our heads around that and still see and believe in our value....Then, we'll hopefully all be on our way to much better days ahead.😊

[B3ndy]

Unfortunately it sounds exactly like fibromyalgia. I have this as well as hypermobility. I don't really have any words of wisdom, except maybe stop trying to re condition by exercising, all that will do is make you feel worse or at least not make you feel any better. Resting and pacing is the best option I have. I know this means that your productivity in life will seriously drop to 20 - 50% of what you want it to be. BUT, in my experience, after a while, the extreme feeling of pain and exhaustion in your muscles will lessen and you can have days that will be more pleasurable, less pain. It doesn't last, but it's nice when it happens. I take Gabapentin and this does help quite a bit too. Ask your GP, and if he is one of the dinosaurs that doesn't 'believe' in fibro, change to a different doctor, or at least insist on being referred to a Rheumatologist for further investigation. Fingers crossed for you.

[Kjones14 in reply to B3ndy]

Gosh, I hope none of these non-believing doctors exist anymore. The science shows that patients suffering with a fibro flare brain's pain centres will show activation on cross sectional imaging.

[Trd29]

Hi sorry to hear your struggle and I’m no expert as I’m still learning about this too, I have EDS Hypermobile and just recently been diagnosed with fibromyalgia which pretty much confirmed my feelings as I too felt weak and really fatigued and my pain in my muscles were worse than before so to me it’s sounds like fibromyalgia which co exist with our illness .

Sending you gentle hugs

[KAGarcia in reply to Trd29]

Thank you. Baylor diagnosed with me with ME which is basically a different term for fibromyalgia but I refuse to believe that I have something that is not diagnosable. I don’t want them to label me something without trying to investigate other options. This is prior to my final diagnosis of EDS. With EDS all my MRI’s show damage to ligaments/joints in knees and hands and ankles etc. My (moving) X-rays show subluxations in hands etc. So at least I know I’m not crazy... Thank you for your reply.

[Myflexiblefriend]

I'm so sorry you are going through this. My 16 year old daughter who is diagnosed with HSD has found acupuncture helps with her pain to the point that she can do her PT without making everything worse. Initially Aqua PT was the only form of strengthening she could do because the support of the water allowed her some relief. She has progressed to land-based PT now and is much improved. She still has acupuncture every 2 weeks and things deteriorate if she misses an appointment. Things also deteriorate if some new pain comes up that keeps her from accomplishing her PT. It's an endless challenge. The combination of therapies you need may turn out to be different but I want to encourage you to keep looking until you find some help. Meanwhile you are not alone in this struggle. Very best regards.

[KAGarcia in reply to Myflexiblefriend]

Thank you - I might try water therapy. I just can’t be out in the heat so need to find an indoor pool.

[Myflexiblefriend in reply to KAGarcia]

Yes! Our local hospital has a hydro-therapy pool but the YMCA works fine for us too. The PT gave her specific excercises for the pool. I hope this helps you

[Myflexiblefriend]

PS also my daughter recently started using a cane when she needs extra support and it has been a huge help. She finds she is less exhausted at the end of the day. Her PT says that because the cane helps her keep a more normal gait it protects her joints and keeps her from expending unnecessary energy. The idea that a cane (or any mobility device) should only be used in a crisis is just not true. It's quickly become a favorite tool in our EDS toolbox.

[KAGarcia in reply to Myflexiblefriend]

Very true. PT has stated once a knee or ankle goes out then your gate is effected and hips etc. Its a vicious cycle. Prayers for your daughter. She’s so young to be dealing with this. I’ve always had issues but mine exacerbated after having my daughter. I literally have gone down hill after the birth of my daughter but different braces have helped. Due to subluxation in hands and ribs I had issues trying to put her clothes on or feeding her with a spoon. They thought I had ALS. But nope just subluxation causing inflammation and bones grinding caused all my pain and after multiple hand surgeries they finally figured it out. Smh

[Myflexiblefriend]

Thanks and yes it's a long crazy journey! We went to the recent EDS conference in Nashville and it was so uplifting to meet so many people dealing with all the various manifestations. There was a breakout session on pregnancy and childbirth but there were so many great ones we had to miss that. Lots of love and prayers to you and your little one - keep in touch 💖

[Blubabycakes]

Hi wondering what every happened about the nefl gene variation and cmt. Did they decide it was EDS . I don't know much about it. I see people with cmt using this and hyper mobility terms

[KAGarcia]

I have the NEFL genetic mutation under CMT and just being watched for symptoms and have a different doctor for EDS. I have a really good pain mgmt doctor at Baylor who sends me to the appropriate doctors for different symptoms.

[Kjones14]

Hi there, I've recently been doing some layman research into EDS, and have read a couple of things that you may want to look into. Aplologies if it's old ground, but I thought it may help. Vit B12 deficiency can go hand in hand with this extreme fatigued muscles. One patient who was discovered as deficient described how they felt transformed on finally getting B12 injections. B12 injections more difficult to access than tablets but don't be fobbed off, you have to self advocate. With rare conditions like this often the patient becomes the educator on front line GP's and sadly, as we've seen on this forum, some specialist doctors too.

Another patient's story was that a kindly doctor told her many years ago that with such flexible, mobile ligaments the best thing to do was build the muscles around them. This would provide a buffer by giving greater structural support to the dainty ligaments. She has never looked back since. Many of us are frightened of the gym, yet these gym staff love it when people actually talk to them about setting them up a programme to help them reach goals. It's what they've done all the sport's education for after all.

In the US, the EDS community affectionately call themselves zebras. Good luck and best foot forward all you lovely UK zebras. (Sia has just announced she has EDS).

[KAGarcia]

Thank you for your comment. The prior neurologist checked all my blood levels since b12 deficiency is usually their first prognosis of someone my age. I’m doing well and not deficient in any vitamins. I am now at a new center with a new neurologist that finally saw abnormalities in my nerve conduction studies. It’s been a long road and it’s taken multiple EMG/NCS and the right Neuro to finally test for other possibilities. Praying for some answers soon. We all know our bodies and I urge anyone with odd muscle fatigue to keep searching if you know something else is wrong.