I spoke to my doctor about getting a diagnosis 2 years ago, after numerous visits to numerous GP they've finally ruled out more or less everything else. They now tell me I'm on a year long waiting list to see a specialist. I have private healthcare but they wont cover it as it's apparently pre-existing.
I can't wait a year. I can't wait any length of time, my life is agony. I dont want to keep going, I am a shell of who I should be. To me the only outcome now is to have confirmation that I am stuck with an incurable condition for life, so I don't even want to proceed. I will trade everything I have to wake up and not hurt, to know what's going on around me. I'm piling weight on becausee I have no energy to cook so I get takeaway, I live in squalor because I have no energy to tidy and I can't even get upstairs without being hopelessly breathless. I'm 30 for gods sakes. I have no friends near by, and my family rejected me because I'm gay. I dont see how it can end well, anyone care to change my mind?
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No_Saint
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The time to diagnosis can feel never ending. In the meantime there are small things you can do. If it is fibromyalgia then rest is important and when you do have better days, doing what you can, then rest again as it isn’t the sort of condition you can just “push on through!” Be realistic at the moment in expectations of yourself.
Struggling with weight in the early stages is very familiar. Do what you can when you can is a good way to look at many areas of what you can do and that includes eating well. It isn’t going to possible all of the time, however is it worth having a few leftovers from meals in the freezer so you can just reheat them for ease when you are exhausted? Little changes, nothing major may help? If it helps to see the what is possible I put on loads of weight at the beginning however I have since lost 5 and a half stone and kept if off for 2 and a half years now, so the future is possible. I now recognise my early warning signs of a flare up (bizarrely I get achy wrists and ankles?! ) and if you can learn to listen to your body you can get better at working with it rather than against it.
There are always people around at all times of day and night to turn to. Including in this group.
Don’t underestimate key services like the Samaritans if you are at the end of your tether as even though things can look really bleak (and night times can feel very very long when your sleep pattern is up the creak!), there is always a sunrise in the morning.
We may not have everything we could wish for health wise, but finding small things to be grateful for can help.
I am sorry to hear about your family situation and hopefully in time you can reconnect with them again in time.
You say your friends aren’t near .... if lockdown has taught us anything it’s that the world is an incredibly small place with the power of FaceTime, Zoom, WhatsApp, texts and the good old phone. I hope you can reach out to a friend and they can be that ear for you.
I sense it is an ear you are wanting more so than answers right now. With chronic conditions we may never have full answers, we find ways to manage symptoms and groups like this can be great as someone has usually experienced something similar and can understand when we reach out in need.
I'm so sorry you're feeling so low, please don't give up. I've been there many times and it does get better. There are so many wonderful people on this group, we can all be an ear when u need to talk. Have to told your GP how you're feeling? Have they not offered you anything in the mean time? What about being referred to a pain clinic? Sending you lots of gentle hugs. Be kind to yourself xxx
I had a similar wait for diagnosis. And then the “specialist” did s** all, told me I had fibro and gave me the name of a website to look at.... And how much are they paid????
This is what I’d do in your position, you don’t have to agree with it.
Drs have ruled out Lupus, RA, osteo-arthritis etc .. so let’s assume you have fibro. It’s sh** but it’s not going to beat you.
I’d make a checklist of the worst symptoms and then against each one work out things that might help—- Epsom salts baths, a tens machine, gels, sprays, otc painkillers( be careful with these, don’t do what I did and damage your stomach) Talk to the GP, very business like— it’s a long wait for my consultant’s appointment, I’m in pain. It causes me to feel like this xxxxxxxx It prevents me doing xxxxxxxx. What would you prescribe to help me? Or what will you do to help me? It’s their job, it’s what they’re paid for, be polite but firm. You want action!
I found the fatigue was worse than the pain and someone on here posted a link about B1. It was the turning point for me. After 1 month of taking 2 x 100mg daily I found I had energy. I could walk without pain. I don’t know if it’ll work for you but it’s cheap so worth a try. I’ve told my GP I take it and his advice was keep taking it and he might try some himself.
You can take control of this and even if you can’t eliminate it, you can give it a good beating.
Hello there, I am glad you came on the forum we just need to talk with people that are in this very big club of a unwanted illness that have empathy and time for a chat of hopefully comforting words. I know you properly feel right now that every little task is a great weight on your shoulders but could you speak to your doctor and write down the things you are feeling right now he/she must have a duty of care to at least try some pain relief and listen closely to your words. I take duloxtene as it took away my anxiety 100percent (living with fibro/cfs) and supposed to be good for nerve pain for fibro patients. Your family are the losers , it’s up to you how you live your life , my nephew took years to tell his dad as was so worried but he went on to marry his partner and built a home together, and my sister /hubbie love him for who he is. I have always said to my grown up children never be afraid to tell me anything il love you the way you are. Yes weight gain does slow us up but have you ever looked at these companies that deliver meals that are frozen and you can take out of freezer, any short walks you have find a little greengrocers for some fresh fruit and veg, one of my tricks is having a jacket potato and some baked beans (fibre). A good reply from echoblue . Some lovely people here and a really good well run forum xx
Hi Saint, I don't want to get too wordy but these past few years functional doctors have looked at or actually done the research and connected the dots. Your brain chemicals (there are nine they test) are affected by the microbes in your gut. Neurotransmitters like Serotonin, Gaba, Dopamine affect your mood and control your weight through hormones. Functional doctors will go after the stealth infections to stop their bad influence on your neurotransmitters via the vagus nerve.
I've listened to more than a hundred doctors and very impressed with Dr. Elena Villeneuve Modern Holistic Health may be her website. The infections she points out are c. diff (clostridium), h. pylori among others. I don't know what herbs she has used to normalize her patients but herbal antibiotics like Berberine, Neem, Allicin, Schisandra, Oregano oil, Olive leaf, etc. can act on those bacteria. Many doctors recommend berberine which I have found useful. Along with a good diet...have you tried a simple stir fry with some protein?
This philosophy isn't really new. A book called The Second Brain (your gut) was probably written in the 70's but the pharmaceutical industry has been oversold with its powerful
propaganda machine.
Don't give up on yourself, there is still beauty in being alive.
Welcome to the Fibro club! None of us want to be here, yet here we are.
It took 20 years to diagnose me; thanks to the fact that nobody had really heard about it back then. 12 years on, and I am a functioning adult again. although far less able, but at least my brain's back in the groove.
Medication. the GP will put you on some kind of Antidepressant. It should help with the stress and the sleep. Once you feel you can cope, you can wean yourself off it. It might take a few months, or even a couple of years, but while we are having to wait for the Specialists to catch up after Covid 19, it is useful.
Pain killers: I used to be on CoDydramol and CoCodamol at the same time, it was so bad, but again, I weaned myself off the CoCodamol quite quickly. I was also on stuff for the IBS,. also Blood pressure meds and something else. I was also prescribed VitaminD supplements. Nowadays they don't like prescribing opioids, as you get dependent on them and then they work less and less well. Now I just take Ibuprofen and the very occasional dose of CoDydramol, when my knee injury kicks my butt.
I can sense real desperation in your post; unfortunately, it is what it is, and will take time. I suggest you look up The Spoon Theory, as it helps others to understand why you are in pain, and why you can't do the things you used to.
I won't lie, it's going to be a slog, but you can get through it and come out the other side smiling. I know it doesn't feel like it at the moment, but there is an element of Mind over Matter in play as well. Much of the pain is your brain overreacting, and you have to learn to tell your inner self that it doesn't hurt as much as it seems to, This is because your nerves are screaming at you; there is no injury causing your pain.
Gentle exercise will help with the pain and stiffness, try stretching at first, and be prepared for cramp, especially in your feet and calf muscles. Later, depending on you age and abilities tri Yoga, Tai Chi or even swimming, to help keep your fitness to a certain level. We have nearly all lost muscle tone during the lockdown, so be gentle with yourself and build up gently.
I hope some of the things I've mentioned help. It will take time, but you can achieve a better standard of life then now.
Hello and welcome. I'm sorry that you are in such pain and distress. Please don't think that you are 'stuck with an incurable condition for life' because it is not true. At worst, it will need some adjustment so that you can regain quality of life. I don't know what your doctors have already looked for and ruled out, but about 50% of fibro sufferers are believed to actually have something called Small Fibre (Poly)Neuropathy, which is likely to be autoimmune in basis (as some say fibro is, anyway). Small Fibre can affect anywhere on the body and can have multiple causes. Nerves re-grow, so if you can find your cause/s you can certainly improve and possibly heal. A common cause is B12 deficiency, which can be at cellular level, but there are many others. When you feel up to it, look for Dr Anne Louise Oaklander on YouTube - Small Fibers, Big Pain (Radcliffe) and see if it makes sense of your symptoms. There are also genetic variants (or SNPs) which are linked to fibro, one of which is COMT, which instructs an enzyme which controls breakdown of neurotransmitters (and oestrogen). In fibro this is generally working too slowly leaving you with higher than normal levels of dopamine and adrenaline/noradrenaline. This can contribute to multiple issues and has a knock on effect on the functioning of other (fairly common) genetic SNPs like MTHFR. Again there are things that can be done to help improve function. Some find (I am one of them) that an autoimmune diet is helpful so this may be worth some investigation. The idea is to remove temporarily anything which is likely to be inflammatory to you and very slowly reintroduce things again one at a time. I am sure that sounds more than you have the energy for right now, but even trying to make sure that you get some fresh vegetables, even raw (if you can tolerate them), salads and fruit will help. Just munch on carrots along with your takeaway. Try not to let your head get mired in thinking about everything at once. You will get through this, you can feel better. My first and best adjustments when I started were Vitamin D (test first - can do online quite cheaply if GP won't, but you may already have a result, if so post it and ask if you need more info.) and magnesium - harder to get a meaningful test result and most are low so fairly safe just to supplement, just start low. I use Better You sensitive oil spray or flakes (in bath or footbath) in the evening - helps me sleep, calms me, helps with muscle and joint pain and keeps me regular....what more could you ask!
I am sorry about your struggle, it’s a dreadful condition that reduces you to a shell as you mentioned. Since my diagnosis I have been left to my own devices with no medication at all. I personally not willing to swallow any pills apart from being told that medication is not suitable for me.
What I find helpful is a gentle walk or physio. My body is like a metal but I just push myself for doing things little by little and as a treat I stay in bed sometimes (May be most of the time ) to recharge my battery.
Lastly, please stay who you are...sometimes strangers are better than families and this forum can offer that to us. I really hear your plight and hope you use this place as a point of interaction with the outside world.
Just a thought but have you had your thyroid checked? Eating well can help you feel better. I know it can be hard but it can be a vicious circle. If you have your thyroid checked, also check B12, D, folate and ferritin, and get the results to check them yourself.
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