a newbie

[dogtanian]

'm a new person here. i'll try to tell you a bit about my story...

i'm 30 years old, a part time mature student. i was working as well as studying but it was far too much, it left me feeling dreadful. sadly now i'm feeling dreadful even with just study. that said, i love my degree, it's in politics, philosophy, history, which is pretty hard work, but subjects i enjoy. it's 3 nights a week, which can be tiring but it's worth the effort. i have two cats, called "george" and "denzel" who are great, and at the moment i share my house with 2 boys and a girl, but that's going to change soon, thankfully!!

medically wise, i had open heart surgery as a baby but my heart's ok now. i have bipolar disorder, which was diagnosed about 6-7 years ago. i've been in hospital a few times with depressive and manic episodes. i also have suspected OCD and possible personality disorder. i also think that i might have delayed sleep phases; even as a child i was unable to sleep before about 2-3 am and now i get 8-9 hours of sleep every night, i just get them later than normal, usually about 3-4 am to about lunchtime. i've tried to change my sleep phase, but no matter what measures i take, it always reverts to those times.

i was diagnosed with FM about 2 years ago, after i had a period where i was constantly run down, sore, achey, stiff, tired, under the weather. i also had a run of infections (in one 3 month period i had tonsilitis 9 times (having never had it ever before) plus flu and bronchitis twice), although that was after the horrible feeling started.

my GP was a bit rubbish, and even though i was in there every week moaning, he didn't help. i went to the national ME centre and they suspected CFS but my GP wouldn't refer me.

i eventually managed to get a referral to a rheumatologist because i was having severe aches and pains and my neck was so seized up i couldn't move my head. this rheumatologist looked me over for about a minute and then studied my notes seemingly in some depth. he spotted that depression/bipolar disorder were on there and concluded that the reason i couldn't move my neck was that i was depressed.

needless to say this bugged me: i'd had depression (and mania) on and off since i was 11, i was 28 at the time. my depression had never manifested physically before, why would it start now? also, he seemed to be more interested in my notes than me, and i suspect depression was an easy get out clause for him. i went away still unable to move my neck and thoroughly fed up.

ultimately i was in so much pain i visited my mother's rheumatologist - my mum also had FM - to get a second opinion, partly but also because i needed help to actually feel like i could move.

she diagnosed FM and said that my hips (were were also really painful) and said they were really inflamed. i can't take anti inflammatories because they interact badly with lithium which i take for my bipolar disorder. because of this i got steroid injections in my hips for a long while (about 8 months) - i'm sure anyone who's had them will confirm that these injections are seriously painful, but they did seem to help.

she started me on physio too, which really helped my neck, back and shoulders. as time went on i also had acupuncture which was a godsend, it made me fall asleep for half a day but when i woke up i felt a lot better and my muscles felt looser and generally better.

this was about a year after i'd had a major manic episode followed by a major depressive episode and i had been in hospital for several months under section, which was really hard, quite traumatic, and incredibly stressful. the rheumatologist believes that this episode was what triggered my FM - basically mania meant having a period of constantly tensed muscles in my entire body.

i took amitryptiline for a while, but because i'm bipolar i have to be really careful because antidepressants can make me go manic. the low dose didn't really help and we couldn't risk putting me on a higher dose because the risk of mania was quite high.

i also saw a colleague of the rheumatologist who dealt with pain management. he put me on pregabalin, which was also a risk because it's an anticonvulsant and they are quite similar to mood stabilisers. sadly it really didn't work, the pain remained, and it made my moods go all over the place and i felt awful.

also, i really didn't feel as though the pain doctor took me even remotely seriously: for instance, he mentioned to me an operation i could have and i said i'd think about it. next thing i knew i was getting a bill from a private hospital for my stay for my operation. he was very condescending, i ended up writing a formal complaint.

shortly after coming off pregabalin (and i still believe it may be related) i developed hypothyroidism. the lithium that i take has a side effect of probable hypothyroidism, and it took 6 years of being on it (and, i suspect, a kick start from pregabalin) to finally pack in. so i was feeling even worse for a while, even more exhausted, achey, i couldn't concentrate, i was depressed etc.

it was a real problem for me, because it was just coming up to exam time and revision just was a non starter, it was horrible. i couldn't do the exams and as a result i'll have to resit the year anyway, that got fixed by my psychiatrist. now, mentally, i'm kind of ticking over.

but physically i'm feeling awful. because i never got an NHS diagnosis, i am unable to get NHS physio. i've been having psychotherapy which has been a) important and b) helpful, which i've also been paying for (long story). basically i can't afford both psycho and physio therapies. i can't afford to see the rheumatologist.

i'm struggling also because the only medications i've tried haven't helped and in one case made things worse. i worry because i think that all the meds will interact with my bipolar stuff and then all hell will break loose!

i genuinely think i have FM, because i have all the aches, the classic tender spots, horrendous IBS, i'm always exhausted - if i get 9 hours sleep overnight i wake up feeling like i was hit by a truck, and i will need at least one nap in the afternoon. also, i almost constantly feel as though i'm coming down with something: every evening i have a mild sore throat, swollen glands, earache, watery eyes and so on. the GP has checked my ears and throat and both were fine. i'm just sick of feeling like i'm running on half batteries all the time.

i also have a tight jaw. i mentioned this to the rheumatologist way back when but she seemed to forget about it. i mentioned it twice to my dentist who also conveniently forgot. it's been tight for about 3 years, and every so often it makes a loud crack, which hurts for a second or so but seems to relieve it. i'm constantly trying to move my jaw out of this tense position, because it's extremely uncomfortable - it seems to be linked to my back and neck tightness too.

the GP thought that my bipolar meds might be having an impact especially in the "hungover" feeling and tiredness. but i explained to him that i've been on the same meds (one permanently, one on and off) for 6 or 7 years and i've only been feeling this awful tiredness in about the last 2-3 years.

he also wants me to get my heart checked over, which i have an appointment for. he then said 'well, i suppose it could be CFS maybe" but he didn't sound convinced.

the problem i have partly is that the NHS seem incredibly suspicious of a private diagnosis. the thing is i wouldn't normally go private, but at that time i couldn't move, i was desperate, and i would've done anything. but now the GP looks at my notes and says "fibromyalgia" and turns their nose up. it's like they think i paid the rheumatologist to say that! i hate this having to mediate between doctors. i hate the fact that i had to get diagnosed privately: i didn't want to take that route but i had to, and they ignore it on the NHS. i feel like banging their heads together!

i'm sorry to moan, in my very first post as well - i always seem to end up writing essays!

[ghchealth]

Thanks for the post! It sounds as though you have been through trauma after trauma and yet still manage to persevere. Fibromyalgia is very difficult on its own merits, but I am sure that bipolar disorder adds a new dimension of difficulty to your life. Continue to seek out those things in life that you love and that fill you with satisfaction.

Regarding the fibromyalgia, it is a diagnosis that many doctors simply refuse to accept, despite evidence to the contrary. There are a number of natural products that you can also try as it sounds that you have exhausted many of the conventional therapies. NutraCool is an all-natural topical product that can be applied as needed to help relieve some of the aches and pains associated with fibro. It does not contain any steroids or OTC painkillers or any of the risks associated with them. Organic oil of oregano, diluted in NutraCool and applied topically or taken internally in a capsule, may also help to make pain levels more manageable without drugs. TOA-free Cat's Claw, such as Prima Una de Gato from Allergy Research or Samento, has also helped many due to its possible immune-modulating effects. Other products that may help include the following:
- Oxygenator - Take 20 drops in 4 ounces of purified water 3x daily. Best taken on empty stomach first thing in the morning, mid afternoon and before bed.
- Oxy-Powder - A colon cleanse can help to remove toxins from the body and may promote the absorption of other nutrients. It is often performed with a liver/gallbladder flush using Super Phos 30.
- Terminator Zapper II - Put on the bottom of the foot every other night while you sleep. This is a small unit that is generally used to help with any type parasitic infection.
-Para-Buster - Take 2 capsules 2x daily with breakfast and dinner for the first 6 weeks. After 6 weeks take 2 capsules every other night before bed for maintenance.
Eliminate - Coffee, Alcohol, white flour, white sugar, micro-waved foods.

There is some newer research that suggests that some cases of Fibromyalgia may be associated with the spirochete that causes Lyme's disease, Borellia Burgdorferi. Although there are several tests for this agent, many of them have a high incidence of false negatives. A more accurate test may be the QRiBb test from the Bowen Institute. It is interesting to note that the symptoms of Lyme's and fibro are extremely similar in many cases.


Regarding the bipolar disorder, I would suggest speaking with your physician about trying an alternate form of lithium called lithium orotate. This can often be taken in much smaller doses that the lithium carbonate form. This may help to alleviate any of the potential side effects that you are experiencing. Another natural product that may shows some very positive research in this area is Omega-3 fatty acids. Most of the research has been done using fish oil, but similar fatty acids can be found in hemp, flax, and other seed oils. The body generally needs to convert these types of omega-3s into the EPA and DHA that are found in fish and also some algae oils. If you try the fish oil, look for a source that is guaranteed to be free of mercury, PCBs,a and other contaminants. I would also suggest taking some other anti-oxidants, especially a mixed tocopherol/tocotrienol vitamin E, with the oil. Many people have found some decrease in symptoms at approximately 6-9 grams per day taken in divided doses with food. Fresh, wild salmon and other similar fish are the ideal source for these fats if you can eat them regularly.

Keep in mind that natural protocols should be given at least 3 months for evaluation because they make take longer than conventional drugs. This often has to do with the fact that they are targeted at the underlying causes rather than simply masking symptoms. I would also strongly suggest working with a naturopath or other physician that is educated in natural medicine. Chiropractic, massage therapy, and, as you know, acupuncture may also be very important components of your healing strategy. He or she can monitor your progress, tailor a program specifically to you, and perform many of the necessary tests. The suggestions that I have made are not a comprehensive protocol but do represent several of the "alternative" products that many people are using in similar situations.