rach73

Hi, Thank you for posting this! I was going to start a post on this today. Not your quote from the Mayo site - which was good, I have awful burning pain in my left leg and both feet. The pain was so bad last night I couldn't have my duvet cover touch my left leg at all. Its still burning now but not as bad. I've had this burning for a few years always my left leg I usually only get it at night, rarely during the day. This is the worst episode I have had. So thank you for posting this. Rach x

Naomi, Its never until someone says something that you realise all the little accommodations you make unconsciously! When I worked we would have meetings twice a day where we would be stood for anything from 15-20 mins. I could never understand why these meetings made me feel ill. I would have to jig about and move my legs or try and find somewhere to perch or sit down! I also had problems where my spine would just lock when standing still and this would cause me intense pain.So moving also stopped my spine getting sore. I love these forums as there is just so much information out there, its when you have the OMG feeling when you read a post and you realise you aren't alone! Rach

Hiya, Yes I have this problem. A neurologist has noted I have weak neck muscles - this was when I was being tested for myasthenia gravis. It causes me a lot of pain because my shoulders hunch up trying to support my head. I have just bought myself a neck brace from Amazon. My last GP wouldn't authorise one as I had no diagnosis (still don't) and felt it may do more harm than good.Which I appreciate but has he ever tried to live with a neck that cannot bear the weight of the head sat on top of it? The problem is when I wear the neck brace my shoulders and back go into spasm - the pain in my neck and the headache it causes clears up. I think this is due to my back being so used to being hunched up. So I wear it for thirty minutes and then take it off for an hour. Its a balancing act. I believe its due to EDS - waiting to see a geneticist. Rach

Thank you for posting. My grandmother worked in a large hospital in the UK - not in a medical capacity. She said it was well known amongst staff that Dr's bury their mistakes! It is a great article and I think many of the Dr's My family and I have seen over the years could do with reading it. Rach

Hi, I suffer with partial obstructions and can feel pretty rotten with it. I like you hate hospitals and do everything I can to avoid going in there. But I think you know yourself that it is time to go in. The CT contrast dye also works as a laxative (the one you have to drink and tastes foul) - I have first hand experience. Sometimes a good thorough purge of the system is all that is needed for a partial obstruction to clear itself. Ideally clearing the obstruction now is better than major surgery later. I have had the major surgery for an obstruction and bowel adhesions, it was a 2 week stay and 8 weeks recovery. Not pleasant and very painful. I would do anything to avoid that again. I don't know about you but I hardly ever run a fever, by normal body temp runs between 35.7 -36.5 at its very highest. At 37.7 I can hallucinate due to the fever. So it maybe you are running a fever but not like the medics are used to because our bodies don't follow the rule books sorry I mean text books LOL! I know you don't want to hear it but I do think a hospital visit is in order. Hugs Rach

Thanks Lina

Hi Sandy, Thanks for your reply. I have noticed I have had a continual headache since starting florinef. Happens about an hour after I take it. However I am also having a lot of neck pain due to having a weak neck (possible / more than likely EDS) so I am in a quandary is it the neck? Or is it the florinef? At present its not enough for me to stop. But I don't want to have a headache for the rest of my life. I have scored a normal blood pressure today 123/70!( normal before was 90/60 and lower) Highest its been in a year - down side is I still feel lousy. I rang my GP today to let him know I was on florinef as I knew he wouldn't have received any info from the hospital yet and he advised me that cerazette my contraceptive pill would make the florinef effect stronger - he checked in his pharmacy handbook. I have to say I am pretty impressed with my new GP! He also told me it wasn't a miracle cure and not to think it would get rid of the POTS. He said at the moment any improvement is great, but POTS is life long. I thought that was honest of him. Obviously there are some people for who it goes into remission but there are others that aren't. I liked the fact he knows you don't just pop a pill and it goes away. He has quite a few EDS and Pots patients and I think they have taught him a lot. Thanks Rach

Great article thanks for posting it. Rach

Hi, Thank you all for taking the time to reply. I have noticed that I am not as dehydrated on Florinef already. I drink a lot anyway, but my hands and fingers would be wrinkled (like I had soaked them in water) if I consumed less than 4 litres of fluid a day. This seems to have stopped and I have normal fingers again. I have noticed that my eyes are really puffy in the mornings so I look like a frog LOL! Small price to pay if its keeping the fluid in. I have also noticed that the strong heart beat feelings I get have also subsided, could be coincidence could be the florinef I will wait and see how I get on as its early days. I am still in a bit of a rough patch so its difficult to gauge. I had real problems sleeping on prednisolone but I seem to be OK on florinef so thats good. I wasn't looking forward to pacing around at 4am having not slept. I do have trouble with the salt loading as I can't abide salt. So I have been adding small amounts to orange squash and ensuring that I cook with salt. Luckily hubs blood pressure is also on the low side of normal - when he had his car crash they took his BP in the ambulance and it was 113/70! Pulse of 99 though - hardly surprising. They assumed his BP would be high due to the stressful nature of the incident. So maybe the extra salt will do us both some good! Thanks again Rach

Hi Cath, Thanks for that. I panicked at the hospital when it had refridgerate immediately on it, we had a 30 minute drive home. Then I remembered our new car has a cool box (the size of a can of drink!) in the front so I used that for the first time! LOL Thanks very much Rach

Hi, Just thought I would add to the suggestions. For a sore throat I have found the best thing for me is a teaspoon of honey, a couple of teaspoons of Pure lemon juice and some hot water mixed all together. The honey I find leaves a lovely soothing coating on your throat. This was recommended to me by my cousin who has cystic fibrosis - so lots of coughing, chest infections and sore throats. She has problems with antibiotics as she is immune to most of them now. The good thing about this is you can have as much as you want! For the sinuses - I wont lie this hurts like ****- but the sweet relief! Pure Lemon juice warmed on a teaspoon and sniffed up your nose. My god it makes your eyes water but it clears the pain ridiculously quickly. I have used this for about 20 years and it never fails. I actually found this in a herbal medicine book, I used to get chronic sinus infections for years and then suddenly they went - I have no idea why. The lemon juice snorting was the only thing that provided me with relief. I vomit copiously when I have sinusitis, so I like to get rid of the pressure as quickly as possible. Lemon juice is a natural anti septic. Another herbal thing to try for your sore throat is sage tea - doesn't taste too good, but I am told by friends this works. You need dried sage, add a couple of teaspoons of dried sage to hot water allow to steep for ten minutes then gargle each mouthful before you swallow. Obviously I forgot to add you can strain the "tea" before gargling and swallowing! LOL My mum and sister inhale steam with Olbas oil in it. It doesn't do anything for me. My mum also puts a hot water bottle on her face and gets relief that way. I tend to only do that when the pain has gone into my front teeth. I hope these suggestions help - if not at least made you laugh thinking of me snorting lemon juice! LOL Rach I forgot to add my mum, sis and I all swear by massaging the sinus area as well to help get rid of the awful pressure headache. Failing that we all rely upon a really hot curry to get the juices flowing.

Hi leize and Hilbiligrl, My heart goes out to both of you. It must be so hard emotionally and physically to be so ill and have no support from your husbands. Husbands who are not only unsupportive but mentally cruel to you as well. Hilbiligrl, I can't believe his family verbally abuse you as well. It sounds like he comes from a long line of bullies. I'm so sorry that you both aren't in a position where you can pack up and get away. I wish there was something I could do to help both of you. Are there any organizations in the states that would help either of you? In the UK we have womens refuge - where you can stay with your children until you can get a place to live. Sending you both lots of love Rach

Hi Cath, Thanks for your reply. I understand completely what you mean about the effort of holding your head up. I am really suffering with that at the moment. I am prepared for a little weight gain as I will be retaining fluid. I just dont want to make the silly mistake I made before. Thanks Rach

Hi, Sorry I need to pick your brains! I have just started florinef 100 micro grammes daily, I have been told to increase to 200 micro grammes in 14 days if there is no improvement. I was just wondering if you guys have any hints or tips with florinef. At the moment I can honestly say after 4 days its doing nothing - but I have been particularly potsy for several days before starting the florinef. All of a sudden before starting the meds I was finding any standing was causing me to get disorientated and dizzy. Even putting socks and slippers on was difficult. For the last 4 days I have pretty much been bed bound - I had a hospital appointment and for 4 hours I had to sit upright in my wheel chair something I just can't do - so this is complicating things. What I am most terrified off is weight gain, for some reason when I am on steroids I become an eating machine. The last time I was on steroids I gained 56lbs in just a few months.To me its like a switch went on and I couldn't turn it off. It was my own fault as I just couldn't stop stuffing my face. The florinef is making me hungry I am trying to ignore it drinking loads and not eating any more than normal - so far thats working. The hunger isn't so bad that it stops me sleeping which is what happened on prednisolone I had to eat every two hours it was awful. Plus I got a bit manic on pred as well very mood swingy - so I am desperate not to repeat the awful time I had in 2008. I have a slight headache but no increase in Blood pressure its still staying at around 90/60. I was completely out of it at my appointment - all I remembered was that the tablets have to go in the fridge. So any advice, hints or tips would be appreciated. Thanks Rach

Thats great news lieze, remember its a marathon not a sprint so slow and steady wins the race! Well done I am so proud of you xxx

Hi Dani Yes a high ANA blood test can mean you have an autoimmune disease like rheumatoid arthritis, graves disease, lupus etc. I wouldn't expect you to have a clear diagnosis until you have had the rheumy consultation. Just try to stay calm and remember you can't change anything by worrying! I have to remind myself of that constantly as I am the worlds worst worrier! Good luck Rach

Hi Blair Grubb in his book The fainting Phenonmenon states that 60-80% of people with POTS have a joint hypermobility / EDS. Book can be purchased on Amazon for around £16-£20 sterling. I would have liked to have been more accurate but my copy is currently with my sisters GP 56 miles away. Good news is that my sister is being referred to my consultant here for a TTT. Otherwise I would have copied the complete quote. Rach

Hi Reen Thank you so much for posting this. Its very kind of you and thank you for sharing that I am not alone with this. As I say I am very lucky I am at stage one with this disease. I will have to try and find out what the uk equivalent is of this ointment. I had no idea that people with EDS seem to get it as well. I will post on the EDS forum I am on and see if anyone there has it, maybe they will know what the UK name of the ointment is. I managed to keep yesterdays antibiotic down but haven't taken todays as I woke up feeling sick. I am waiting for my domperidone to take effect before I chance it. Thanks again Rach

Thanks Issie, I hope you manage to get some sleep xxx

Thanks Issie. I know that you are 100% right on the diet front. At the moment I am not willing to make the radical changes needed. Mentally I am just not in the right place to stick to it. I live for cheese, a hazlnut yogurt a day and at least two slices of bread! I am vegetarian so cutting out those foods makes life a little bit harder. I will do it just when I am ready to make that commitment. It will probably happen slowly over time, that I will reduce my consumption of these. I know that you are completely right. I must be annoying the heck out of you! Rach

Hi Issie, I hadn't heard of it either until my GP told me that was what it was. I then spent a couple of hours on the Internet having a look at what everyone had to say about it. The autoimmune connection made me laugh as I have been told and then untold I have myasthenia gravis since 2007 - an autoimmune disease! When I was on high dose steroids I was actually a lot better than I am now. According to two neurologists I do not have MG - they can only explain my ptosis and double vision as conversion disorder or somatization.So now I stay away from neurologists and don't have a lot of faith or respect for them. I take mestinon to resolve the ptosis and it works - only works in MG ptosis and no other disease. But hey I am the patient what would I know? I believe I have ocular MG - so it only affects my eyes. I think my muscle weakness and fatigue are caused by the POTS. I probably also have EDS - super flexible very transparent skin, stretch marks when a skinny kid on the back of my calves due to growth spurts. At the moment the diagnosis of HS is less than 24 hours old for me so I am just trying to get my head around it and see if I can keep this antibiotic down - me and antibiotics don't get on. As I will need them for around 6 months to try and get into remission - which has happened spontaneously for me before- its important I can literally stomach them! Thank you so much for taking the time to look up. Due to the nature of the illness and the level of embarrassment I feel I didn't want to go into detail. Rach

Hi Thank you everyone for your replies. I've had 3 nights of good sleep, the first time in ages. I am actually feeling a lot calmer and actually discussing things with you made me then discuss it with my family who were great. I know the anxiety probably hasn't gone and will come back but I feel better able to handle it. Ive been quite poorly the last few days so I have had to rest as much as possible, basically sitting up even on a recliner or standing was making me feel ill and lightheaded. So I have had to lie down. I have also just been diagnosed with the skin condition hidradenitis Suppurativa after being fobbed off for years. I moved Dr's surgeries and was diagnosed in 8 days. Its a horrible painful condition but I am lucky for ten years its never moved past stage one. Just makes me wonder if I am some sort of collector of rare syndromes and diseases? LOL Thanks again Rach

very interesting thank you. It seems from the article that the US medical profession - some of them - are quite like the British medical system believing that ME / CFS is a psychogenic / psychiatric illness. I wonder if any of these Dr's have ever been called to a coroners inquests where a patient has died from this psychogenic / psychiatric illness? Rach

Hi, Thank you so much for your replies. It has been very reassuring that I am not alone feeling like this, although its a horrible symptom to have. Last night I slept properly for the first time in weeks. Although I am really tired and weak still. I am also very lightheaded today, so I have come up to lie on my bed for a bit. I expect after a few hours I will start to feel better. Just trying to get some fluids down as well. As I said the anxiety is weird, I am feeling relatively calm today even though Hubs is driving 100 miles today to go to a family lunch. If it was a true anxiety response I should be climbing the walls - I'm not. Whats wound me up is him saying he was struggling to get the car into 5th gear?????? Why should that bother me? I am laughing at myself now. Rationally its a new car - to us and 5th is different in every car, some you have to lift the gear stick up others you don't! (I'm in the UK so different set up than you guys in the USA). Issie - is the Ashwaganda a herbal type supplement I have never heard of it before? Emma - the only test I have had is the TTT, no other testing and I'm not on any treatment other than what I do for myself - try and up the salt and drink a lot of fluids. I am going to push for more testing as I think -well I know I have EDS and I probably have ocular myasthenia gravis. I will see my consultant again on the 24th March and push for more testing my belief is that without knowing whats causing it how can we ever treat it? Yogini - I am on cerazette contraceptive pill which stops my periods, however I stopped them for two months before the TTT. Back on them now but I am having a breakthrough bleed and cramps, so I guess hormones could be playing a part in this flare also. Montanakimberly - What is wellbutrin - sorry I am having to admit my ignorance here. Dixieland - worriers of the world unite LOL - its an awful personality trait to have. I think mine is connected to never wanting to get anything wrong and let people down. Its a hard thought pattern to get rid of.I did years of CBT after a breakdown and have a better handle on it now. Thats why when this feeling started I panicked. You guys are the only people I have shared this with. I haven't discussed it with my family as I don't want them ........you guessed it.....to worry LOL! Firewatcher / Songcanary - thank you for understanding and explaining what is going on in my weird body. It was very reassuring. Thank you Rach

Thank you for your replies. When I posted that this morning I was so wound up! I tried to take my mind off the way my body was feeling and did a bit of cleaning. I was so weak after doing the cleaning that I went to bed and slept for 3 hours! I woke up around 1730 GMT and have struggled to stay awake ever since. Its now 8pm and after a valiant fight I give up! I thought I would check to see if I had any replies and then go to sleep! I seem to either have insomnia or I struggle to stay awake! All your responses make a lot of sense. I feel like the accident triggered the stress response and now my body is stuck in this vicious cycle. I see my consultant on the 24th of this month so if its not any better I will bring it up then. Thank you for your replies. Rach