I’ve been having health problems this last year but cannot get a diagnosis, nerve(feet) pain and GI trouble but a mystery .All my testing is normal. I have not been riding because of feeling miserable with low or no energy but recently began to feel a little better. I’m a pleasure rider ,life long.
Last week I rode an hour the pasture .when I went to get off I thought my legs would give out and almost fell My horse is a smooth gaited TWH + well behaved so I really don’t have to use my legs very much. All that night the next few days I had Hamstring aching and moderate pain, couldn’t get up from a chair with out using my hands. Naturally I was concerned. last year I had x-rays of my back which was normal and no injuries since. Its not nerve impingement,its not my back.
Yesterday I rode again trying not to put weight in my legs and relax yet this was even worse and I’m still in trouble.
Has anyone had any similar issue’s? I can walk on the flat for 4 miles with out pain but not hills without an ache. but the riding did something to my hamstrings and I can’t figure out how sitting on my smooth boy is more difficult for my muscles than going for a long walk? Just my hamstrings.
Anyone with some ideas and yes I’m over the hill. What hill? I never saw the hill…
Can you describe what other things the doctors have tested for? You only mentioned an X-ray of your back.
Have you seen seen a chiropractor?
Have you discovered to have any food allergies that might cause the GI upset? Dairy? Gluten?
IBS?
Do you have a normal exercise routine ?
Thanks for writing, yes i’ve been tested for most everything and before this started I walked daily and gym 3X a week also have four horses to take care of . I’ve tried no gluten and everything else I can think of because the doctors are stumped. Docs have been nice not rude at all just my testing is all negative. I tried to go to Mayo but they require some basic idea before they’ll accept you, like pick a speciality. No one looks at the whole person.
Thanks for letting me whine… thinking that I can’t ride I just can’t deal with that. Its been my life, no kids…
Keep being the squeaky wheel until they find some reason for what is not working right.
That is what it takes when Drs can’t find something right off and, not being an emergency, just seem to wait to see where that goes, which at times becomes an emergency!
Have you tried on your end different saddles, a seat saver in case something is being pinched there and that could help, riding different horses?
Try all you can figure to change on your end also, see where that takes you.
Do keep going back to the Dr until they have an answer.
Never give up or take the “over the hill” for an answer.
The rest of you is also over the hill, but only your legs hurt?
Something is going on in there that they need to find and help you with.
IMO, limiting potential back pain diagnosis to just x-ray might be, well, limiting.
What type of Dr(s) has been unable to diagnose your back issues?
Maybe go to neurologist or orthopedic?
I’d be thinking additional testing might include EMG, MRI, CT??
GI issues. Talk to your Dr about going to a gastroenterologist. Talk about getting some samples for Viberzi and see if they hep.
There are Drs that look at the “whole person”… DOs (vs MDs)(IMO of course). I’ve had DOs as my PCP for 20+ years. Having said that they are not “specialists” in all parts of the body. They are generalists who do look at the whole body. Mine have always referred me to an appropriate specialist when appropriate. I’ve been fortunate to also have a GI who is DO and not MD.
All above are based on my personal anecdotal experiences of one and are my opinion only 
Sounds all too familiar. I had all those symptoms early on. Then it all got much worse and new symptoms developed. I finally got a diagnosis. It was thyroid disease caused by autoimmune problems. Treatment took away all my symptoms.
Mystery GI problems, no or low energy, legs not working, aches and pains…are symptoms of many autoimmune problems.
Echoing the possible autoimmune issues: I experience similar symptoms with my UCTD & fibromyalgia. Did your doctor do blood tests for autoimmune diseases?
Thanks again for the ides. I really wondered if anyone had had the hamstring issues . The rest is a ness and yes all that testing was negative. Hamstring pains new and started after trying to ride again. I did find a muscle disease that starts after 40 but thankfully I don’t have all the symptoms and of course no treatment.
Which autoimmune and inflammatory markers did they test? There are quite a few. Some conditions can test negative, later turning positive, and with some conditions you can have them and can be seronegative. With all of your symptoms, if the doctors ran the right tests, something really should show up as either a hint that will point you in a direction, or a definitive diagnosis.
Just because you don’t have all the symptoms doesn’t mean you don’t have a disease. You might have one, 10, none yet, or only the most rare or usual symptoms.The only way to know is to test.
I had issues in almost every muscle, especially glutes, hams, quads and shoulder. But really, I had muscle fatigue from head to toe. My autoimmune disease is thyroid. I used to have all your symptoms. Your symptoms sound like they could possibly be low thyroid autoimmune. With thyroid testing, a unknowing doctor will tell you you’re fine or normal, even though your levels indicate a problem and the cause of the symptoms. Some doctors think that as long as you fall anywhere between the lowest range number and the highest range number, you don’t have a problem. That’s not quite how it works. Three basic thyroid tests are always done together, TSH, FT3 and FT4. To test for autoimmune thyroid disease, these tests are called TG/ab and TG/ab. Are these some of the tests that your doctor ran?
The best doctors that I have had for my (complex) health issues have been DOs. Very good at looking at the body as a whole, and how systems interrelate. IME, also good at sorting out “mystery illnesses” or unusual groups of symptoms.
I agree. A DO or someone who looks at the body as a whole and all the interrelationships. The right tests will reveal something.
Like COL, I have autoiummune issues. Besides Hashimoto’s, I have complete adrenal failure. One or both of these could explain all of your symptoms. People don’t really have a great understanding of just how much the endocrine system impacts the entirety of your body (most doctors don’t, either). For example, the adrenals produce Adrenalin, Cortisol and Aldesterone. Cortisol is critical in pretty much EVERY function of your body, and Aldesterone help regulate your Potassium and Calcium levels. When this glad fails your entire body starts to shut down. You are deadly fatigued, intense muscle pain, etc. Before my diagnosis at 48 years old I could not climb the stairs without pulling myself up by the handrail. Now, with treatment, I trot up them. But I had to KICK and SCREAM for a diagnosis! My doctors just said I was getting older and out of shape, and I said HELL NO! I finally found a doctor to run the tests and got my Dx, and have another great doctor who sees the entire picture and thinks out of the box.
Additionally, autoimmune diseases rarely come in singles. So someone with Hashi’s is at risk for developing Adrenal Insufficiency or Type 1 diabetes because of the toll the failing organ takes on the others in the endocrine axis. COL gave very good advice about not settling for just the TSH results, you need a Free T3 and Free T4. For an example of how useless the TSH is, mine comes in at about 1/100th of normal. That’s because I take T3, and it’s suppressed. But many doctors would see that and think I’m incredibly hyperthyroid, when it’s obviously not the case. I would also suggest an ANA, Thyroid peroxidase antibody (TPO), and a fasting AM cortisol. If the cortisol test comes up low, PLEASE PM me so I can give you some guidance on how to get properly diagnosed.
It’s been said earlier in the thread, but it looks like you need a doctor that can take off their tunnel vision blinders and look at the ENTIRE body, not just one thing at a time.
At any rate, OP, I hope you get some answers soon and let us know how you’re doing! As you can tell by COL’s and my stories, it may take some time, but getting the right Dx can make all the difference.
So is mine. 1/100th of normal…the low number or the high number of the normal range? Mine is usually around .01-.04, when the low range is .1. Low TSH = Hyperthyroid, but that doesn’t always apply if there are others things going on, as with me. Also, the “range” for normal is pretty debatable, as anecdotal evidence shows many cases where the TSH is not an accurate indicator of thyroid function, yet medical professionals still cling to it like it’s gospel.
Mine is similar. Right on to clinging to misperceptions of low TSH. Mid to upper normal TSH, for that matter, too, often correlates with low in normal range FT3 and FT4, and being hypothyroid. Low TSH isn’t hyperthyroid if you don’t have high FT4 and FT3, or hyper symptoms. TSH should be suppressed when on thyroid medication.
Same here. Why they think this is beyond me. Hyper thyroid is not just low TSH. It’s high FT3 and FT4, and hyper symptoms. Exactly, they also tend to completely blow it when it comes to low thyroid, especially Hashimoto’s. I was presenting with textbook hypothyroid (hair falling out, weight gain, etc.), but the endo refused to treat based on my labs which were in “normal” range. The problem was that I was not converting T4 to T3, but she absolutely refused to accept this. I had to fire her and find a doctor willing to treat me with T3. Hair stopped falling out, weight returned to normal.
Then there’s someone like me, who didn’t have the textbook symptoms. Hair was healthy, no weight gain. So glad you fired that endo, hair stopped falling out and weight returned to normal! The power of getting correctly diagnosed and correctly treated is really something, isn’t it?
Don’t forget about TG/ab, too, since are two thyroid antibodies for Hashimoto’s, TPO/ab and TG/ab. Not just ANA needs to be tested, but many others, too. Absolutely, I just didn’t mention them because you had mentioned them in your previous post. Honestly, all those tests would be the way to go, but sometimes doctors can be real stinkers about ordering them, even if you have good insurance like me. I still don’t know if my original doctors who drug their feet were doing because they really felt the tests weren’t needed, or because their egos couldn’t handle a patient who seemed to know more about her own body than they did.
If doctors haven’t test these labs already on the OP, they are not trying too hard. When their ego gets in the way, just tell them you are probably wrong and they are probably right (kiss kiss), you’d really like to just make sure, no harm in testing. Heaven forbid a person ever know their own body, right?
Getting the right diagnosis and treatment was life changing for me! Sounds like you, too downen. Walkers60, hope you keep searching for a doctor who can uncover the source of your symptoms and help you to feel better soon.
Thanks again and It seems like lots of you have low thyroid. I am exhausted with trying to find whats wrong with me and yes I have been tested repeatedly for all the suggestions the only odd test was very slightly elevated AB but that just means you may get hypothyroid. Actually tried treatment but made me feel worse.
I must have some rare disorder and am considering full genome testing ,shot in the dark but its that or just give up.
I can’t let go of riding so I try but then legs quit working when I get off and its scary. I’m riding a dead broke smooth twh just around my farm, love him .I retired recently (health) and t could still ride with DH doing all the work.
Now the hamstring thigh pain , not feeling like I can walk after riding (hour) is only in last two months .
I wondered about my back but all test negative.
I’ve really had good doctors no attitudes they’d love to solve it.
Luckily the farm is set up so its simple to care for the horses ,at least I did that right, I built the place so I could easily keep it even if I lived to be 90.
Those who got the right thyroid diagnosis and treatment - was it from a specialist and how did you find them?
What is AB? An antibody? Which one because there are several. If you mean that you tested a thyroid antibody and it was high, then you have Hashimoto’s. What was the treatment you tried that made you worse? I have no idea what kind of medication anyone would prescribe based on just a high antibody test. Genetic testing will not tell you what you currently have. It just tells you what you have a predisposition to possibly having. You can also get all sorts of diseases that you do not have genes for. Hashimoto’s can be genetic but you can also get it for other reasons.
Low thyroid is very common. It is also very commonly misdiagnosed. There is confusion with doctors understanding which labs are needed and how to correctly read the results. Frequently they tell people they are fine but their results are really too low. I’d be happy to help you interpret yours if you’d like.
Honestly, if you haven’t had thorough testing yet, it’s hard to assume that you have some rare disorder. If AB is a thyroid antibody and yours if high, then you have Hashimoto’s. It is a rare condition. I think it’s something like 2% of people have it, or something like that.
Mine was from a PCP that I had at the time. I had to tell him which tests to order. He said he’d never heard of them. He was going was ordering others that were wrong and he didn’t even know what they were for. Prior to that I had seen about 8 years worth of internists, PCP’s, urgent care, GI doctors, naturopaths, neurologists, sports medicine doctors, alternative nurses, a rheumatologist, the ER.
I lucked out after I switched from the clueless PCP to my current one. I found her on my health insurance carrier’s website. She is very open minded and doesn’t mind that I am very proactive with my health and getting to the bottom of things and that following my gut instinct leads me ask for lab tests. I also see a Naturopath. I am trying to find an immunologist and rheumatologist to make sure I’ve got all my bases covered.
The first step is to educate yourself as much as possible going in. A good source of thyroid info is stopthethyroidmadness.com. They also have some resources regarding doctors. I found mine via a referral from my acupuncturist. Another way of finding a doctor who “thinks outside the box” is by checking with a compounding pharmacy and asking which doctors use them for compounded thyroid meds.
Good luck on your journey, and don’t let the doctors tell you something you know isn’t true. I’d most likely be dead if I’d stuck with my original doctors.
