Helene Posted March 15, 2023 Report Share Posted March 15, 2023 Would like to talk with others who suffer from Non-Stop chronic pain, SFN and Dysautonomia/Pots feeling alone and difficult to carry my illness by myself. Quote Link to comment Share on other sites More sharing options...
Sea otter Posted March 15, 2023 Report Share Posted March 15, 2023 @Helene you are not alone. Lately I also have hard time coping with dysautonomia/POTS. I am just sick and tired of being sick and tired... Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 15, 2023 Report Share Posted March 15, 2023 Hi Helene and Sea Otter, You are not alone! It can be a heavy burden to carry. At times it can seem endless and the path ahead is hard to see. I’ve had a real rough time for the last 14 years. First severe Rheumatoid Arthritis then progressively debilitating symptoms, that no doctor seemed able to figure out. I lost all of my hobbies, then exercise, then disability, then loss of household function, and finally bedridden for 6 months! Ughhhh! Terribly ill the whole time and with scary cardiovascular symptoms and signs. After 4 cardiologists and untold other “ologists” I realized that the local rural docs where overmatched. Now seeing docs at Columbia in New York, about a 12 hour drive home. But it’s worth it. Finally diagnosed with POTS. Driving down next week to have battery of tests and see doc. But my life actually changed for the better several weeks ago, when I saw a Utube video about POTS and dehydration. I researched it, started drinking 7+ liters a day, and had my PCP start IV hydration. AND MIRACLE OF MIRACLES I’M NOT BEDRIDDEN ANYMORE! Now, I’m not “cured”, but I don’t feel like I’m going to die any minute and I can do light activity. What a difference, and just when everything seemed really bleak! Anyhow, hope my story gives you a boost! We’re all in this together! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 15, 2023 Report Share Posted March 15, 2023 Oh, I should add, many other comorbidities, loss of dentition, vision, hearing, and worse of all right now is left hip. RA has destroyed the joint, but first covid and now docs afraid of my complexities have delayed surgery for years. At this point I can only walk a few dozen feet with walker and major pain control! 🤪So, pain, dysfunction, loss, I’ve got your back! 😂 I tell my docs, “don’t worry until I lose my morbid sense of humor”. My Columbia Endocrinologist wrote in his note “despite his documented suffering, not unlike the biblical Job, patient remains admirably and amazingly cheerful and upbeat”! 😂 As I told the dentist removing my abscessed teeth during the peak of the pandemic, as I laughed and laughed, “the pain is inevitable, but I can choose to laugh or cry”! Quote Link to comment Share on other sites More sharing options...
Sea otter Posted March 15, 2023 Report Share Posted March 15, 2023 @MaineDoug You are definetely one of a kind. 😊 Yes, sometimes we can laugh of all this, but sometimes it is really tough. People have so many problems because of illness or have no support. I think women struggle with some things because of hormones - monthly cycle, PMS... I don't like how my illness sometimes affect my emotions. It's neverending battle, it's always something. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted March 15, 2023 Report Share Posted March 15, 2023 7 hours ago, Helene said: feeling alone and difficult to carry my illness by myself. Anything in particular going on today? It IS so hard some days..... I 've had quite a few of them lately and sometimes the most helpful thing is just having someone else KNOW that I am struggling. After all, there isn't much for anyone to do, but it is really difficult feeling as badly as we do and being all alone with it. Talk to us about what is going on for you? Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 15, 2023 Report Share Posted March 15, 2023 4 hours ago, Sea otter said: Yes, sometimes we can laugh of all this, but sometimes it is really tough. People have so many problems because of illness or have no support. I think women struggle with some things because of hormones - monthly cycle, PMS... I don't like how my illness sometimes affect my emotions. It's neverending battle, it's always something. It is sooooo hard sometimes! Every day is often a battle. Many days I have learned that I have to just rest and try to recover. Guys with POTS can probably understand the hormonal issues more than most men! I know I suffer from terrible hot flashes, stripping off clothes as my sweat glands shift into “soak” mode 😂! My wife gets a kick out of it. it certainly is a never ending battle! Whack a mole! I haven’t walked more than 20 feet with a walker or eaten solid food in four years! Oy Vey! Hang in there! Quote Link to comment Share on other sites More sharing options...
Sea otter Posted March 16, 2023 Report Share Posted March 16, 2023 @MaineDoug thanks! The thing is that lately I am discouraged with some other things related to illness. In my country we don't have specialists, only few doctors know something about it, and we are pretty much on our own as patients. We are searching alone for all information and trying to raise awareness. Unfortunately, there are no results yet. It is very discouraging to suffer from this awful condition, and on top of that carry the burden of raising awareness and educating people/medical staff in order to change something. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 16, 2023 Report Share Posted March 16, 2023 Oh my! Those are certainly some added challenges! Don’t know if it helps but many everywhere struggle with access and correct diagnosis for problems like ours! I’m driving 12 hours this Sunday, to get to Columbia Medical Center in NYC as there are no experts qualified in POTS anywhere near me. But I have learned so much on this site and other reputable sites. I’ve had to “create” my own treatment plan, then present it to my PCP with supporting studies to get the care, which has changed my life! Luckily my PCP listens! I’m very excited to see an expert, get testing and more information and a treatment plan. Keep trying! In the modern age we have to be our own best health care advocate I’m afraid. Hoping you have a good day! Quote Link to comment Share on other sites More sharing options...
Sea otter Posted March 16, 2023 Report Share Posted March 16, 2023 46 minutes ago, MaineDoug said: Oh my! Those are certainly some added challenges! Don’t know if it helps but many everywhere struggle with access and correct diagnosis for problems like ours! I’m driving 12 hours this Sunday, to get to Columbia Medical Center in NYC as there are no experts qualified in POTS anywhere near me. But I have learned so much on this site and other reputable sites. I’ve had to “create” my own treatment plan, then present it to my PCP with supporting studies to get the care, which has changed my life! Luckily my PCP listens! I’m very excited to see an expert, get testing and more information and a treatment plan. Keep trying! In the modern age we have to be our own best health care advocate I’m afraid. Hoping you have a good day! Yes, you are apsolutely right, similar problems everywhere in the world. Hopefully some things will change for better. As long as we are alive there is still hope. 😊 I am sorry that you need to drive such a long distance to Medical Center. Have a safe trip. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted March 18, 2023 Report Share Posted March 18, 2023 @Helene, I don’t have chronic pain (just sporadic), but I’ve had dysautonomia for about 20 years. It has gotten worse gradually until here I am today, unable to work, cook, socialise, or do much of anything. I sometimes wonder who I am now that I can’t do any of the things that used to make me “me”. Not being able to concentrate is one of the hardest symptoms for me. There are lots of kind and wise people here to talk to any time. Sending kind thoughts to you from Australia – I’m not very wise so I’ll leave the wise words to others 🙂 Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 18, 2023 Report Share Posted March 18, 2023 My pain is two pronged, the pain related to my POTS, and the pain from my severe Rheumatoid Arthritis. Unfortunately my liver enzymes have skyrocketed and still being evaluated so my RA meds were stopped (they’re very hard on the liver). But without the Humira my joints are exploding. So, pain yes, lots. Currently controlled with Oxycodone and Medical Cannabis. Unfortunately until my hip is replaced my pain will be unreasonable, per CAT scan my hip is a mess, spurs, chips, 1/2 cartilage defects on the weight bearing surfaces. Without heavy meds I can’t bear weight at all. With the meds and a walker I can stagger short distances, but it’s really starting to aggravate my other joints, feet, ankles, knees, hands (from walker). But ortho won’t touch me until my POTS is stable and they have guidance on doing the surgery while on Prednisone. Unfortunately I’ve been on Prednisone for 14 years and am addicted in the literal sense. I tried a wean (for the hip) last year. Ended up in the Emergency department! 🤬 I have my new Endo talking to my Ortho, and with input from my new Neuro (next Thursday, please, please, please be one of the “good ones”🙏🤞🤪😂, you know, listens, repsectful, follows objective signs and follows professional treatment guidelines), and hope for a new hip this Spring? 😳😁 Not sure if this is realistic or I’m in denial, but there is hope! My poor hip can’t take much more, expecting it to finally fail anytime soon (clunks in and out with every step), so if no THA I’ll be in a wheelchair! 🤪 Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 19, 2023 Report Share Posted March 19, 2023 @MaineDoug It will be difficult to get your POTS under control as long as you are in so much pain and unable to move. I had several surgeries while my POTS was at its worst and did have some complications from anesthesia but nothing that couldn't be handled. There are some special considerations for anesthesia for dysautonomia but considering that your quality of life is so poor I hope they will see that after the hip replacement surgery ( and careful rehabilitation afterwards ) you should have a much better outlook on getting your POTS under control. Wishing you the best of Luck with the doctors! Quote Link to comment Share on other sites More sharing options...
Looking_for_light Posted June 22, 2023 Report Share Posted June 22, 2023 So sorry to hear - we can totally empathize with you all - with the hugely detrimental pain aspect and woefully inadequate care too! We hear you. To say life is extremely challenging is a massive understatement. Sending thoughts your way. Seems that uncontrolled persistent severe pain (from other conditions) impacts the chronicity and severity of Hyperadrenergic PoTS symptoms? Anyone know some of the mechanisms of this - physical stress on the body, extra inflammation? Other factors? Anyone know if the Hypothalamic Pituatory Axis (HPA) relates to this situation? Anyone know of any studies / papers on this or very similar? Which types of pain is PoTS itself known to cause or be connected to? (thinking in some, possibly migraine attacks, musculoskeletal... perhaps depending on other conditions also present?), Hope things can improve for you all. Many thanks. Quote Link to comment Share on other sites More sharing options...
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