Could any of you tell me your story please. As I have been suffering for so long now and kinda stumbled on this. But it's just me! The heel pain, the fact that my hips aNd bones feel like they are going to come through me skin. Pain in my shoulder that wakes me.
Bonjour heidI, enfin une autre personne qui souffre des talons ! Je déteste ça, car vous marchez et payez toute la nuit pour la hanche, le talon, la cheville, la cuisse interne. Avez-vous des douleurs dans le cou où vous ne pouvez pas regarder sans tourner comme un robot ? J'ai le mien depuis plus de 6 ans maintenant.
Hiya yes and it make me dizzy. I'm going to the docs next week but I'm worried about suggesting that this is what I have. I have been in pain for yrs and am only now pricing things together.
please don't worry about suggesting 'things' you have researched to your doctor.... they are after all 'General Practioners', they are not expert on every medical subject known to man. I have been fortunate enough to have GP's that have actually said this to me, and it can help them to either diagnose or refer for indications. If you are polite and not pushy, I'm pretty sure most GP's will listen carefull to what you have to say.... at the end of the day, you are the one person who can relate your symptoms specifically to you... we are all different and conditions/diseases can present in different ways, according to the individual. I've been suffering with chronic joint/neuropathic pain for nearly ten years with spinal stenosis treatment, carpal tunnels to be done in two weeks, MRI awaiting for shocking pain down my arm and bloody 'benign' fasciculation syndrome to boot.... Don't give up! stay strong and present your symptoms as accurately as you can and hopefully you will get an answer that can help you move forward x
Je suis allé chez mes médecins pendant une éternité, j'ai eu 3 injections de cortazone, aucun résultat... Les anciens médecins ne se sont pas préoccupés, j'ai vu un jeune médecin généraliste, fraîchement sorti de l'école de médecine, bingo, une IRM dans les 3 mois, une injection chaque semaine et des antidouleurs tous les jours. J'ai mal presque en permanence. Je redoute de penser à ce que ce serait sans mes médicaments, merci à mon jeune médecin généraliste qui m'a écouté.
Have u been diagnosed with AS? I know each persons case is different, but do u have sacroilitis (SI JOINT pain)? It seems to be very common in AS. Have you had X-rays, MRI,etc? Those also help with diagnosing. My case is sacroilitis, iritis(case of re inflammation), morning stiffness for several hours and recently my hips are hurting more. Currently on VIVOMO (NSAID) and will be starting Humira in a couple weeks.
Sorry I made a typo CORRECTION: iritis (eye inflammation)
I'm so sorry to hear about all that you have been through. But I have to warn you about carpal tunnel surgery.
My sister had it 15 years ago and came out in a wheel chair because she got RSD from it and it spread to her legs too. It's called CRPS now. Pain is listed as worse than amputation.
I know most people will be fine but apparently there is a 5% chance of this they don't tell you about. The consent form mentions only chronic pain.
Talk to your doctor and ask him about the chance of RSD/CRPS occurring before your surgery.
Studies have been done that show taking large amounts of vitamin C can prevent its occurrence. You can google it.
So if you do have the surgery be sure to take vitamin C before and after. I wish you luck.
Can I just add to your post by suggesting that if our doctors don't seem to understand this disease....find a good site on the net..and print out the contents of the site and take it to the Doctors...I did this early on in my illness and my neurologist was really grateful for the information as she knew so little about AS....it might help with a diagnosis and also maybe help other patients that may present with similar symptoms....G
I did the same as you did...after the "run around" for years. I found a wonderful doctor who actually took me to the lab and then on the Xrays and an MRI..he was with me the whole time..learning and understanding more every time. He still phones me to find out how I'm going. However he has since left the area and is now committed to bigger and better things...but I count him as a friend and value that so much. I know I can email or phone him sometimes....he is so special.
I was Miss diagnosed for many years with polymyalgia and GCA. I have recently been diagnosed by an expert in AS, who tells me my head pains etc are doe to inflammation around the neck. You mention fasciculations!? I get them in the tongue keeping me awake all night. Do you also get them in the tongue?. Can't find anyone else who suffers with this, even oral medicine consultant is confused. 😏
Hi there - just messaged you with my story
Hello Heidi...I think we will echo what I have to say...we are all long suffering with this painful situation. Mine first started when I broke two vertebrae in the base of my spine...30 years ago. Instead of getting better it just got worse and over the next 25 years I couldn't walk or sit for more than a few minutes. Doctors all told me to be patient and in time it would get better. After so long I was desperate for help so I saw a specialist in Thailand who helped a little with cortico-steroid injections into my spine, groin, hips and hands. Then I went to another hospital here in Bali and found a neurologist who did an MRI and diagnosed Ankylosing Spondilitis. By this time I had very severe pain in my lower back, mid area ( thoracic ) and neck ( cervical )...down my legs and arms. I had muscular spasms also...very painful. I was given Tramadol for pain and antidepressants also Diazepam to help me sleep. It has been downhill from then with all sorts of other symptoms making my life hell at times. Tramadol does ease the pain...but it's a roller coaster..sometimes good...mostly bad. This site helps me manage my thoughts and gives me friendship and hugs from everyone here...Let us know how we can help you...Hugs...Gloria
No I haven't. I have made an app this Fri
I have been treated for yrs for neuromas in my feet. Only to be told I haven't got any more but the pain is worse and I have it in other places (which I have had for yrs but just thought I was throwing my body out walking fumny). So if I don't have any what's all the pain? And I startEd putting things together. So I don't know if this is what I have, I grabbing at straws. But the pain sites and the tummy trouble just woke something in me xx
sorry to hear about your sister, sounds dire.... too late for talking now, I'm booked in next week. I'll take my chance as I can't live with CTS anymore anyway. Thanks for the tip with the vitamin C :-)
I've had them in my tongue, but they are so random jumping from one place to the next, all day everyday...... twitch twitch, twitch twitch..... sorry to hear it keeps you awake. I'm on 3 different med's for neuropathic pains etc and the Amitriptyline helps me to sleep.
Hi Poddy, I'm also in Amitriptyline and Pregabalin. My nights of twitching seem to coincide with my reducing steroids even by 1mg, so I definitely feel it's related to inflammation. It must be really annoying to have twitching every day. I currently have twitching in my left eyelid, my GP says that's usually caused by lack of sleep. 😏. Thanks for replying 😃
Cela montre à quel point la maladie peut se manifester différemment. Personnellement, j'ai fracturé ma clavicule et l'ai séparée de mon sternum. J'ai encore eu mal pendant 25 ans. Une veine comprimée dans mon bras, des côtes fracturées, mon cage thoracique déplacée. Ils n'ont jamais fait de radiographie de mon cou. Ce qui aurait montré que j'avais fracturé toutes mes vertèbres cervicales. 25 ans plus tard, cela a commencé dans mon bas du dos, je suis allé en kinésithérapie, le thérapeute dit « marche par là », elle a dit que ce n'était pas ton bas du dos, c'est dans ton cou. Ensuite, j'ai eu une fusion vertébrale cervicale et j'allais bien pendant 4 mois, puis BAM, tout est revenu beaucoup plus grave, j'ai commencé à avoir une fatigue incroyable, toutes les articulations me faisaient mal, semble que le fait d'ignorer mon cou pendant 25 ans a déclenché la SP. La fusion vertébrale l'a mise en surmultipliée. Je n'ai qu'un peu de douleur au talon, l'enthèse (peut-être orthographié correctement) atteint mes poignets, mes chevilles et mon cou, surtout. Raideur matinale. Je ne savais pas que ma racine nerveuse c5-c6 était comprimée, maintenant elle est juste endommagée. C'est comme la grippe, tu sais quand tu as mal et que tu te sens comme si tu avais été heurté par un bus. Eh bien, les mauvaises zones l'ont pire, les points faibles, donc je me promène en ayant l'impression d'essayer d'équilibrer une boule de bowling sur un cure-dent. Ça a l'air de savoir ce que tu ressens, comme si quelqu'un avait pris un marteau sur ton bassin. Je ne peux pas vraiment sentir ma jambe droite, sauf si elle est pleine d'aiguilles et de fourmis. Mes yeux sont extrêmement sensibles à la lumière. Et non, tu n'es pas seul, certaines personnes ici, y compris moi-même, se sont senties complètement seules. Tu ne l'es pas, empathie de tous côtés, des questions, n'hésite pas à demander.
Hi all I went to see my gp and she thinks I have fybromyalgia. Can't thank you all enough for all the advice.
She is doing blood tests to rule out other things, at least she is taking notice of what I'm saying.
Thats great Heidi...my doctors all diagnosed Fibro at first...it's the obvious....but I tend to think now that it's a symptom...not the real cause....There are lots of symptoms..and they all add up to chronic pain...I do hope the tests will show what else you have...or have not....Hang in there...help is coming.