Newbie!! Needing some advice

Totally relate to you Kate, that's been my life for the past 8 years and the doctors just give you that pity full look when you try to express your frustrations and the ability to cope, I'm luckier than you for the fact I'm 48 and my sons are grown up, so what I did was print out everything I could find about this awful disease and gave them it to read so that they now help me with things without me feeling guilty about having to delegate, I had to give up work as I became highly undependable, as you know some days are really bad. In my opinion the doctors are ignorant and uneducated on this disease that they tend to fob you off, I find having a good rant on here amongst friends helps ease that pressure, there is no cure and as far as I am aware no real medications that really work (sorry to be a killjoy). Stay in contact here because you do pick up some coping tips that really work, I hope you feel better soon x

Hi Kate - I'm a 67 year old male and have suffered with fibromyalgia since I was 37 years old. I've been to many, many doctors and even went so far as to see a world renowned specialist in Boston, Massachusetts. I've tried every pain killer, every anti depressant offered and various herbal forumulas that were nothing but gimics. 

Because Fibromyalgia is thought to be a lack of a brain chemical or a combination of brain chemicals, anti depressants are offered to heighten the serotonin level in the brain. I can't take anti depressants. There wasn't one that worked for me. The only med I take at bedtime to get a night's sleep is xanax and I take that very conservatively at 0.5 mgs nightly. 

In all my years experience with Fibromyalgia, I think you have to realize that it won't kill you. It may make you a bit crazy but it won't kill you. I think the problem most people make with Fibromyalgia, is they give up on themselves and label themselves, as terminally ill. The trick is, to try your hardest to exercise and live a normal life. Because there's so much unknown about Fibromyalgia, what may work for you and what works for me, may be light years apart. I'm only trying to share my experience and hope you might be able to extract one thing that helps you out. I know when I have a fibromyalgia flare, everything goes haywire from my ears to my toes. I even lose some hearing and suffer miserably with tinnitus, which I believe is part of fibromyalgia. 

Cognitive issues that you describe are not very uncommon and really come witht the territory, especially during a fibromyalgia flare. I know with my symptoms, I suffer more during the change of the seasons than any other time during the year. My body is very sensitive to drafts, air conditioning, driving a car with the window open and I would go so far as to say, even some foods, which I cannot identify even after all this time. 

What would I ask my doctor? I would ask my doctor if there were any pain management clinics to help you through this? You are most likely at a peak stage in your FMS and I think you will feel better as time passes. I know now, 30 years later, I continue to suffer, but not as much as I did back in 1987 when I first was diagnosed. Back then, I couldn't even move my neck to see if traffic was coming when I pulled out an intersection.

I am not sure what the new meds are offering.. Lyrica and the rest of them seem to be working for some people but I have no testimony to give you. Some people have great luck with Neurontin or Gabapentin. I cannot take either (Gab being the generic of Neuro) and I'm very medication sensitve. I usually use alleve but because fibromyalgia comes with a lot of IBS issues, alleve is never an OTC you can take regularly. The stomach just won't tolerate it. At least for me.

I am not sure if you've been to a rheumotologist or not.. Not sure if you've had a complete work up, especially a CBC but you might want to get a separate opinion on all these symptoms you're experiencing. It could be possible you're dealing with more than just fibromyalgia and early detection is key with any medical issue. I can totally understand your reluctance with anti-depressants. I don't tolerate them at all but some people have great success with that family of meds when dealing with fibromyalgia.

Sleep is so important in aiding fibromyalgia and you're not getting the proper sleep which makes coping with the issue twice as hard. Again, I urge you to get a second opinion and also check out a pain clinic or physiologist that specializes in pain management resulting from fibromyalgia. I have never felt over-thirsty from fibromyalgia, but like I said, everyone is so different. I realize I am a male and the vast majority of Fibromyalgia sufferers are female but most everything you described, minus the thirstiness, I have suffered from at one point or the other.

Please try to stay active, eat a healthy diet and don't give up.. I honestly believe a 2nd opinion is due here based on what you're saying. I believe your last doctor visit, the doctor was sensing you were not only suffering from fibromyalgia but depression, thus he wanted to treat one to assist the other. Again, there's really been very little discovery in the proper way to treat fibromyalgia.

I wish you luck and hope your symptoms get better. I have suffered with it for over half of my living life now and it's not a picnic. When it takes a hold of your body, you feel out of control and defenseless. I would be happy if my tinnitus went away. That seems to be directly related to fibromyalgia along with chronic fatgue, irritable bowel and bladder, forgetfulness or cognitive issues and a variety of other problems. Again, none life threatening.

I wish you the very best..... Please keep us posted and I honestly hope you feel better and get your life back.

Hi Kate, welcome to the forum. The level of iron in your blood should be roughly between 12 and 150.  Having too much iron in your blood could be the cause of your weakness, fatigue, and joint pain. This definitely needs further investigation so DO go back to your GP and mention your increased thirst as well, as this could be related. Have you lost weight? x

Hi Kate,

I am very lucky that I have a very understanding GP, but the horror stories you read about some of them is dreadful.

I've had Fibro for many years, but only diagnosed about 2 years ago.  I suffer with Arthritis and Spondylitis and I think my GP thought that at first, that the additional pains and symptoms were from either the Arthritis or Spondylitis and just upped the painkillers etc.  

Eventually, he said enough is enough and arranged for me to see a Rheumatologist who did loads of tests, sent me for an MRI, scans Xrays etc before confirming that it was Fibro.

Unfortunately, as others have said, there is not a lot that helps, I took Hydroxychloroquine for around 6 weeks and the side effects were horrendous and so decided to stop taking them.  Most days are bad, some days are worst than others and I have to really pace myself.  I'm 68 so do not have a family to look after which makes it easier for me to take it easy when necessary.  I also have a very understanding and supportive hubby. 

I don't know if you have already seen a Rheumatologist, but if not ask your GP to refer you asap.  Do you work full time, would it be possible to do part time maybe.  Life is hard when you are in pain, hang on in there Kate. x

Hey Kate,

Welcome to the site this also was my first stop and I must say everyone has been wonderful. So in the beginning most doctors say if you were happier and give mental health meds because it's believed the happier we are then we'll sleep and be rested but that only goes so far. Then most do not offer pain meds and many people are against that also. So the next best is something for inflammation to calm it all down. I use meloxicam 15mg and maybe a muscle relaxer relaxer. Those both can come from your gp and are non addictive. The struggle for help should never be this difficult but sadly it is stay positive

Kate...first of all. What have you tried for pain? What supplements are you on....if any? I have tried many things and some of the most important supplements have been....magnesium, b12, malic acid, l-acetyl carnitine as well as some others. D-ribose has been a life saver for fatigue as well but Dr. Teitlbaum has the best protocol for that which is 15 grams a day. Google his name and you will find him and his website and there is a ton of info there .

You need to find a food rheumotologist oraybe a wellness doctor to help you. Look into LDN for your pain as well. I'm not a doctor so I can't tell you what to use but these are some things in have used that have made a massive difference .

Hi Kate,  There is a condition called Hemachromatosis where your body holds on to iron.  It is treatable and can cause the symptoms you are describing.  It is important to rule it out because it can cause irreversable damage or even death.  You can be tested for this unlike with Fibro.  Good luck!  

Hi all

Thanks so much for taking the time to respond to me. Makes me feel very welcome. I appreciate it massively. I was given amitryptaline to take at night which made me wake up feeling worse. Tried gabapentin too which made me feel very drugged up. I have been prescribed cocodamol and fluoxetine. Neither of which help me. I eat a good diet. Have tried gluten free but made no difference either. I walk as much as I can cycle and swim. I work 9-3 monday to Friday to fit around my children. No one around me knows anything about the condition or seem to think that I should have it in the first place.

I have pernicious anemia so used to get b12 injections. The last time I had them the nose asked why I wasn't bouncing out of the surgery. I said I felt no different so she told me not to bother having them. I have never heard of half of the medications and supplementsyou have all mentioned. I went to GP a fortnight ago for to request a blood test and yet again lost my symptoms. This is when the high iron levels have come back. They have advised to repeat the teSt in 6 weeks.no advice or talk with doctor that was the receptionist. I have today registered at a new GP hoping fresh eyes may be useful. Nearest appointment is 2nd November.

I will certainly make notes up to then of what I see on here a d will look into all of your suggestions. I am aware there is no cure and it is about life management but I am struggling with simple daily things that are making daily life more difficult by the week. No medical professional I have seen or been referred to seems to be able to help.

Thanks

Kate x

Hey Kate

I'm 36 with 3 children 16,12 and 2!!! And I work full time! What you wrote sounded like me ! The pain started after I had my youngest it was hurendous burning in my legs etc I to couldn't drive manual so I've bought an automatic car ! I got put onto pregabalin about 5 months ago and it's take the everyday pain away not complaining but better than before I'm also on amatriptolin zapain and tramadol a tens machine I also go To pain management groups. Why are u not on any meds ?

Hello Kate!

So sorry to hear about all your pain, I have most of the same symptoms. My chest hurts all the time so scary. Idk... I have no answers. I just try my best to relax but it's hard. The docs think that we are all crazy that's why I question what fibromyalgia really is. Praying for you! Xxxxx